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Objective Signs of Intractable Pain: Constant Severe Pain Symptoms ARE Diagnosable

2011-03-20T23:00:00.000-07:00

by Heather Grace

Do you have severe, persistent pain? Have you been diagnosed with a serious pain-related illness like Reflex Sympathetic Dystrophy, Adhesive Arachnoiditis or Intractable Pain? Most pain patients find it very difficult to find, and maintain, good pain management. There are many reasons for the problems surrounding access to quality pain care (that is a whole separate article). One of the easiest issues to address comes down to the ability to tell a real pain patient from a possible fake.

It's long been believed that pain is a subjective complaint--meaning that only the patient can really tell you what is going on. Surprise! That's simply not true! Forest Tennant, MD, DrPH, an Intractable Pain specialist for over 35 years, has used what he's learned in his practice to help other physicians better understand pain. In fact, he's written over 300 articles on pain. In a ground-breaking paper, Dr. Tennant highlighted the key signs of severe pain.

Yes, you read that correctly. There are specific signs that a doctor can utilize to diagnose and treat pain sufferers--just like they use in diagnosing any other illness. Pain does indeed have objective signs!

Sadly, even the majority of doctors don't know this is possible. It's perhaps the greatest flaw in the curriculum at medical school. Pain is simply not a focus of a great deal of study. Despite the fact that pain is one of the chief complaints patients have when visiting their physician, most doctors just don't have enough training in its diagnosis and treatment. Of course, that doesn't help pain sufferers get the care they need.

So, what can we do to help doctors understand the plight of the pain patient? It's simple, really. This information must be spread, far and wide. Whether you are seeing your family doctor, an orthopedist, a pain management physician or any other medical professional, please help them further their education on pain: provide them with Dr. Tennant's ground-breaking paper! It's time that doctors realized that pain is something that can be objectively diagnosed. All you need are the right tools. Here they are! From the article:

Using Objective Signs of Severe Pain to Guide Opioid Prescribing.
Pain Treatment Topics, June 2008.
by Forest Tennant, MD, DrPH

Online at: http://pain-topics.org/pdf/Tennant-PainSigns.pdf

How do doctors ensure they are treating only true pain sufferers? Thankfully, there are many ways to tell. Uncontrolled severe pain can be identified by objective signs that help practitioners to differentiate between drug-seekers and relief-seekers. This sort of pain "produces more objective physical evidence of its presence than does the average case of diabetes or coronary artery disease."

Persistent pain that is either untreated--or even under-treated--will produce physiologic responses. These include: changes in pulse rate, blood pressure and pupil size. Other signs include: cold hands/feet, sweating, body asymmetry, sensory avoidance, muscle atrophy and seeking positional pain relief. What does that mean? Please review the charts on this page for the nitty-gritty on these signs.

The best news, of course, is that astute healthcare professionals can use these measures to objectively identify pain patients. No more guessing, no undue stressing. The pain rating scale is not the only tool in a physician's arsenal. While it is helpful to request a patient's rating of their own pain, on a scale of 0 to 10, doctors can compare this information and other complaints put forth by a patient against the objective measures. This strengthens the therapeutic relationship, while also ensuring doctors are relieving the suffering of pain patients in their care.

Blood Tests: More Objective Evidence of Pain

Hormones. Further evidence of severe, persistent pain can be found in blood tests. Doctors should look for changes in hormone levels: stress hormones, testosterone, progesterone, estrogen. Both men and women will have readings that are out of the norm. Depending on how long a person has been dealing with pain (early on vs. years into it), the adrenals, for instance will either produce very high readings or very low, respectively. Stress hormones work over-time, trying to combat what is going on in the body. Eventually, however, the body can no longer cope and stress hormones are depleted. All hormone levels go out of whack. Signs can be seen in the patient, such as changes in volume of body hair, irregular menses in women, etc. These are questions that can be asked during an exam, to help clarify possible hormone issues, prior to testing.

Drug Testing. As a pain patient, expect your doctor regularly test you, to ensure compliance. This basically means, your doctor wants to know you are taking the medication you have determined helps relieve your pain--and you are not taking anything else that you have not discussed with him. (Either prescription or illicit drugs.) This may be blood tests, however, urine testing is far more common. Perhaps this is because the results are available right there in the doctor's office, but know that this is controversial. If a urine screening comes back with unexpected results, request a blood test to verify the data.

It's a sad fact that this is necessary in pain care, but because of the DEA and State Medical Boards, doctors are using this to protect themselves. Yes, it's true--this doesn't happen in any other care of any other serious illness. It's almost not in the doctors' hands anymore--it's a necessary evil. Just know it's happening all over; you are not being singled out. This is just one more way a doctor can ensure he/she is treating on pain patients, and not people who might try to sell their medication and/or abuse other substances. A pain management physician never wants a drug addict or drug dealer to enter their office. However, they can and they do. If a simple test means I have access to pain management, which allows me to be a productive person, well, I say, why not? After all, I've got nothing to hide! Nor do any other pain patients. Now, it's just another thing on the list of 'things to do' at the doctor's office. So relax, provide your sample, and move on with your life.

A good relationship with your doctor is key. So long as you are a pain patient and are not keeping anything from your doctor, all of the information here will strengthen the therapeutic relationship. Trust is a huge part of being a pain patient. You must prove yourself, and continue to prove yourself, throughout your care. It shouldn't be the case, but sadly, in this climate of hyped up Oxycontin addiction and overdoses splashed in headlines, doctors have to be vigilant. If they weren't, they wouldn't keep their doors open very long! Be upfront and honest--always tell your doctor what you think might help, and he/she will share his ideas with you. If you aren't getting good pain care, keep looking. Good doctors are out there, even though, admittedly, they are harder to find than they should be!

Differences from One Patient to the Next

Patients may wonder whether these objective measures may be problematic for them, given the differences in measurements from one patient to the next. The answer here is simple. When you visit a new pain management physician, provide him/her as many records from prior doctors as you can. If your blood pressure tends to be very low, then perhaps what appears to be a 'normal' reading is actually very high. Conversely, if you already had high blood pressure prior to the start of your serious pain, you can provide a pain doctor with evidence of this. Most people with high blood pressure are treated for it with hypertensive drugs. If your blood pressure was high and it subsequently increased, this will be noted in your files. So will any increase in blood pressure medication, since your pain began. This will help a physician understand that the blood pressure rating may be low due to medication, not because you aren't in pain.

Additionally, these ratings will change, over time. Once a patient receives the appropriate medication, he/she will get some degree of pain relief. If you are getting medication that helps, your blood pressure/pulse and other signs will improve, because you are getting the pain under better control. It is also important to note that even if patients are not getting the pain relief they seek, either one or the other of blood pressure or pulse can be within normal range.

In my case, I felt immediately at ease with my doctor, after our first visit. I think my pulse was still very high for the first several months, but my blood pressure went down fairly quickly. I finally felt like this was my answer--this doctor could help me. The stress I felt was being combated by the mere fact that I trusted this man to help me. Less stress often means better pain control. Additionally, patients who are generally getting good relief but are having a very stressful morning, fighting traffic, etc, may have higher than normal readings, as well. It is best for doctors to always give the patient time to calm down from any such issues, before they are screened for blood pressure and pulse. This will assure readings that more accurately reflect a patient's true resting blood pressure/pulse rates.

What Does a Pain Patient Look Like?

Personally, during my first visit to an Intractable Pain specialist, I was scared. By the time I saw this doctor, I was literally at the end of my rope. If he didn't have any answers, I was determined to find my own way out of this, even if meant death. It was a very dark time for me, no question.

I had no clue about all of these objective measures for pain when I saw him, I was just sitting, trying to fill out paperwork, wondering if I would ever feel like myself again. There was no question that I was in serious pain. I had been on high doses of Vicodin for some time, but it just wasn't managing my pain anymore. There are far better medications out there that don't require patients to take in 3000 mg of acetaminophen per day, or more, as I was for several years!

At that time, many of these signs were present in me. Very high pulse (94, if I remember correctly) and blood pressure was equally high (I don't recall the exact rating, but it was in the neighborhood of 145/110). I don't recall my pupil measurement. Hands and feet were like ice nearly all of the time. I slumped to the right in my chair, guarding my left arm, which was very numb. I could no longer tolerate leaning it on the arm of any chair, no matter how padded it was. At the same time, I kept my back straight, trying to always pick a chair with a high back. If that wasn't possible (as if often the case at doctor's offices), I selected a chair that was very tightly up against a wall; that way, I could lean my head up against it. I scarcely moved my head or neck, trying to stay very rigid. My neck was a mess.

I forced myself to shower, but didn't do much other than comb my hair. No make-up. By the time I'd showered, I was already late. Everything took so long to do, it seemed! Even though it was January, I wore very flat shoes, flip flops, because most everything else was so uncomfortable, anymore. I found that my feet being covered, especially the toes, hurt. And heels, forget it! No matter how cute, 90% of my shoes just collected dust.

Clothes too! I wore loose fitting clothing, but tried to make myself as presentable as possible. I used to dress fairly professionally, as you would expect a Department Manager in Marketing/IT. That was who I was for so long--nearly a decade. But, increasingly, even in the last few years at work, I could not wear my nicer suits, or even nice flowing skirts/dresses, because none of the shoes I was able to wear looked right with them. I struggled to find semi-professional clothing and after a few years of this, I plain gave up. Soft cottons without any pilling were about all I would manage.

Several times, during my visit with the doctor, he asked me to repeat myself. Apparently, I was speaking very softly and didn't even notice it. That's common with neck injuries, he told me. I still am not exactly sure why, but the fact that my surgery was near my vocal chords does make some sense. (They had to go through the front of my neck to do the surgery safely, so I was warned I might never speak again, etc. Luckily that didn't happen, but I often have people asking me to repeat myself, especially people I don't know and am not comfortable around. Weird, but true.)

As he examined me, he noted muscle atrophy and weakness. My doctor took photos of my pain areas. Even I could see the swelling in my forehead and the crease, as I looked at the photos--it was noticeable, though I'd never thought about it before. I have chronic headaches, which are apparently visible when they're nearly round-the-clock! He also noted inflammation in my upper back. It all made sense. It was right there, for all to see, if they would only look!

I often bit my lip, thinking it was a nervous habit. Apparently, it's something people in pain do to distract their nervous system from the pain. I also became very clumsy. That's how I would describe it. Many cuts and bruises, mostly on my legs. I'm not sure if it was the numbness or my body's desire to be rid of the constant pain signal I was dealing with. I was at an 8, 9 or 10 on the pain scale, consistently, before I saw this very knowledgeable Intractable Pain specialist. Apparently, some patients, consciously or unconsciously, hurt themselves, to help their bodies redirect the pain signals.

Important Questions Regarding Intractable Pain

During that initial visit, my doctor asked me questions no one else had asked before--honestly, I was starting to get nervous...

Had I been sleeping? Hardly at all, max of four hours at a time. Even that much was rare. I was exhausted.

What about eating? Not much, but lots of sugary stuff, mostly. Really bad. He nodded.

Did I go out much? See family or friends? Not really. Not ever. I was starting to worry. What did that mean?

Then he asked about exercise. Or if I went out and did anything I enjoyed, at all. No and no.

What did I do with my time? Sit around, worry, try to sleep, watch some tv. Not much, at all.

My alarm bells were going off. It was as if he knew me better than I knew myself! At the same time, I was worried it was something really, really bad. I mean, the pain was bad--really bad. But, what was all this about? Throughout his questions, my doctor was taking notes--lots of notes. Notes make me nervous. Other doctors rarely listened so intently! I started to kind of space out--maybe I was in shock, or maybe I was too worried to think straight, anymore. We were still talking, but I was so consumed with the WHY behind it all, that I didn't hear much else, until he asked this one:

How are your teeth? Grind them? Lots of cavities? Other dental work?

That was it, I lost it, completely. How did you know? I began to sob. He left the room, grabbed a box of tissue and came back. (I suspect, this was also to give me a chance to compose myself.)

When he returned, I had to give him every bit of info, about my teeth. I often gritted my teeth in my sleep--not grinding, but jaw clenched, very tightly. In the past few months, it was as if I only left my house to go to the dentist. Crown after crown. Cavities rotting into seriously bad situations. My first ever bridge. I didn't know anyone who had one of those, except me. I was a dental nightmare!

Based on the exam, interview, photos and all the paperwork, it was pretty clear to my new doctor that I had Intractable Pain, which has some extra symptoms for doctors to look out for, in addition to the subjective pain signs above. Eventually I learned I also had Reflex Sympathetic Dystrophy.

Tough stuff, but at least now I know. And with the help of a knowledgeable doctor who cared to ask the right questions, I have some semblance of a life back. Pain management makes a big difference. Is it the same life I was living before? No. I will always have pain. That's what Intractable Pain is. But, more than that... I am still here, and I am fighting for others with pain, like me.

What Can I Do To Make My Doctor To Understand My Pain Is Real?

Please, share the signs and symptoms of pain with your doctor. Let them know you are not crazy, faking or lying. Your pain is real and they can see the symptoms... if they just know where to look. Print out the brilliant work by Dr. Tennant for your doctor(s), loved ones, fellow pain sufferers you know. Bookmark it, too. It's here: http://pain-topics.org/pdf/Tennant-PainSigns.pdf for all to see!

Change starts with you! Give copies to other people at your doctor's office. Start a movement. Push for the care you need; push for better care, for everyone. The more doctors understand a true pain patient, the more we will all get the pain care we desperately need. Many of the people I know with severe, persistent pain have gone through hell, just to get someone to listen. Isn't it time that era of pseudo-pain care came to an end? Real pain care starts today--with you!

Remember: Pain doesn’t discriminate. It affects people of all races and economic status at all stages of life—from our very young to our elders. Research has also shown that about a third of people who report pain indicate that their pain is *disabling* -- defined as both severe and having a high impact on functions of daily life. Pain is a national healthcare crisis. It is our nation’s hidden epidemic.

The Bottom Line: People in pain have a right to timely, appropriate pain care. And thanks to Dr. Tennant's work, all doctors will be better equipped to diagnose, then treat it.

An Intractable Pain Patient's Guide to Medication Safety

2010-12-30T16:00:00.000-08:00

by Heather Grace

The life of an Intractable Pain patient is incredibly challenging. Whether you have Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome, Trigeminal Neuralgia, Central Pain Syndrome, Adhesive Arachnoiditis or any similar illness, there are a lot of important issues on your plate. Policy-makers, physicians, insurers, and even the media, raise a whole host of concerns for persistent pain sufferers. It's easy to let important things like medication safety slip to the bottom of your "To Do" list. The fact is, there are many precautions you can take, in order to make yourself--and your medications--safer. We've all heard the horror stories. None of us wants to feel as though we need to be looking over our shoulder. Why not be better prepared for common situations? This article should help you do just that! Let's begin...

Strengthening Safety in the Doctor-Patient Relationship
Your physician's most important role is ensuring your have effective pain management. However, medication safety also begins at the doctor's office. My doctor asks me to sign a Prescription Agreement form each year. By doing so, he has a document that states very simply which pharmacy I go to for my medication, their address and phone number. At the bottom of this form, I am asked to agree to go to this pharmacy, and no others, for my pain medication. If for any reason my pharmacy changes, I am also asked to inform my physician.

Every pain management doctor should have such an agreement in place. If any issues arise, the office has easy access to where a patient's medications are handled. Additionally, as of 2010, physicians can also submit prescriptions to pharmacies electronically--even prescriptions for pain medications. The prescription agreement protects the physician, and may also help legitimize the patient's need for prescription pain medication. However, to protect pain sufferers, it's probably best to take this idea one step further.

For a patient's protection, an additional form should be generated--and updated--yearly, at the doctor's office. A Pain Patient Diagnosis form is vital. This should include the date, patient's name, how long they've been treated for Intractable Pain, and should also include an updated list of diagnoses. Additionally, it should contain a statement such as " I, Heather Grace, have reviewed and agree to abide by all rules set forth by my pain management physician, Dr. X. I believe my condition(s), listed above, are permanent and incurable. I wish to be treated by Dr. X, for Intractable Pain, and understand that my treatment involves the responsible use of all medication(s) prescribed to me, as part of my pain management treatment plan." The Pain Patient Diagnosis form, signed by both doctor and patient, is a huge step toward protecting both parties, legally.

For logistical reasons, it would be best to combine these two forms, into a single document, entitled something like "Pain Patient Diagnostic & Treatment Agreement 2011." Why not bring this up with your physician, if they aren't already doing something like this? Updated yearly, such a document should be kept on the patient at all times. For those with implanted medical devices, be sure this is noted on the form. The more protection you have, when dealing with the authorities or TSA agents, the better!

This sort of information is priceless, when it comes to your safety as a pain patient. As soon as you receive these sorts of documents, make copies! If at all possible, keep a copy in your wallet and purse; also keep a copy in your car. For those who do not drive, ask your caregiver or loved one to keep a copy in their car, on your behalf. Make extra copies for when you travel. Ensure you have extras stored somewhere safe, in case the originals are misplaced.

Strengthening Safety at The Pharmacy
In addition to keeping a copy of your diagnostic-treatment documents in your car, provide a copy to your pharmacy each year. This will make them feel safer, providing you with your opioid medications. Then, each month when you pick up your new supply of medication, take an additional step: save pharmacy's information sheets, on each medication. Place all of these, as well as the receipt, in your glove compartment. Include the information from your doctor regarding your diagnosis, and you're prepared for whatever comes your way! Be sure to switch out your medication information, monthly, so that the most recent prescription information is always on hand. If you are ever pulled over by the authorities, it's easy to prove the medications you have with you are indeed yours, and were legitimately prescribed, to you, as a pain patient.

As a pain patient, I believe this makes it safer to carry my medication, in whatever container I choose. Let's face it, anyone with a serious illness has several prescriptions. Carrying all of the original containers, provided by the pharmacy, can prove exceedingly difficult. When you're just going out for a couple of hours, why bring more than a day's worth of medication with you? Because the medication is clearly identified on these prescription sheets, anyone can easily identify each medication by color, the words printed on them, etc. Whether they are in a pill sorter or small pill container, there will be no doubt what medications you have with you, what they are prescribed for, and that they legally belong to you, a pain patient being treated for a legitimate illness. Of course, the laws vary from state to state, and it is always best to carry your medications in the original containers, provided by the pharmacy, whenever possible.

Coming and Going. Pharmacies are everywhere these days. Most are brightly lit and they appear to be a safe place to be. However, more and more, pharmacies are being robbed by people desperate for prescription drugs. Many are addicts; some are dealers. The street value of many medications, unfortunately, would astound most people. When you go to get your medication, just be cautious. If anything appears out of place, don't go in. Wait, and even call the authorities if you suspect a robbery in progress.

When you leave the pharmacy, be even more cautious. Be aware of your surroundings. Don't be fiddling with your purse to find your keys or reviewing the prescription info, with your head down, as you walk to your car. If you want to double-check your meds, do it in the pharmacy. It's also best to get your keys out, before you head for the car. It's these little touches can mean a big difference to your safety! Be extra careful if, when inside, either you or the pharmacist mentioned the names of the medications outloud. It's best to have a good rapport with your pharmacist, and feel comfortable telling them the things that matter most to you. Before the issue arises, instruct your pharmacist that you prefer for them to show you the names of the medications you are picking up silently--by allowing you to review the pharmacy's drug information sheets. This keeps you safer in a place that is increasingly becoming a target of would-be thieves.

Strengthening Safety at Home
We all know how vital opioid medication is to pain management in serious conditions like RSD/CRPS. We also know how dangerous pain medication can be, in the wrong hands. It's a sad state of affairs that we have to worry about our medication, in our own homes, but it's a fact of life these days.

There's a senior community not far from where I live that's had multiple break-ins. Why? Maybe it's because there's a natural assumption that older people experience more pain that the average person and thus, they're more likely to be prescribed pain medication. Vicodin, Soma, Tylenol with Codeine and the like have been stolen from the seniors' homes, with little to nothing else being disturbed. For an Intractable Pain patient, such a theft could be life-threatening. A chronic pain sufferer may take 30 or so Vicodin per month. Intractable Pain patients generally have stronger medication, often in large quantities. So, how do we keep our meds out of the wrong hands?

Know When/Who To Share Your Information With.
Though you may feel it is best to share your health information with most service people, in an effort to speed things up, be cautious. Especially when the people you are speaking with have access to your address and may even handle your keys, it may be best to be vague, if you tell them anything. For instance, whenever your car is going to be serviced, give only your car keys to the technician. This sort of thing never seemed like a real potential for problems, but on several occasions, I've told my people at my local car dealership that I wasn't able to wait for the car, because I was in so much pain. All it takes is one crafty person overhearing your conversation to act--and you could be targeted. Even when you are speaking with someone you know and trust, it's a good idea to be aware of your surroundings, and anyone who might overhear what you're saying. For instance, it might be best not to discuss the particulars of your doctor's appointment on the phone to a friend, while a locksmith is installing new locks on the front door of your home. Especially in today's world, exercising caution is a good practice.

Playing It Safe.
Many patients I know, including yours truly, have safes. The safe I purchased was inexpensive and it's large enough to hold a month's medications, plus important paperwork. Whenever possible, a wall or floor safe is a patient's best bet. Many excellent safes are available for under $350. You can get an idea of the cost of a good safe online; start by searching for "inexpensive floor safes". If you know how to install your safe, you can save on installation as well. Ask a handy friend--anyone you know with their own set of tools. These safes come with directions; anyone that's handy should be able to install one relatively easily.

For those wanting extra protection, an alarm system is an excellent idea. Some are available without a monthly monitoring plan. For instance, a web site called x10.com has a 19-piece system for under $100. No monitoring plan is necessary--the system calls you if any of the 8 door & window sensors or 2 motion detectors are activated. It sounds like an excellent plan, though I cannot vouch for it's effectiveness. Similar systems are sold at stores like Fry's Electronics, and other electronics stores. However, any of the big companies with alarm systems that you see advertising all over do not have these sort of self-monitoring systems. Most require the monitoring for $30 per month, and up. Find the alarm that works best, for your situation.

There are some pain sufferers I know who have built-in security systems, in the form of a large dog. If you have a service animal, chances are, the presence of a large dog is enough to frighten off would-be thieves. What I've always heard is, it's not about total protection--it's about making your home a less likely target. Many thieves merely want an easy place to break into. Statistics show that they commonly look for: (1) Easy access to the property combined with low visibility, (2) A Home that is/appears to be unoccupied, and (3) something worth stealing. Of course, there are a lot of ways to combat these issues. Read more about securing your home now.

Out of Sight.
Because our main concern for possible theft are our medications, at home, never leave your prescription bottles in plain view through doors or windows. The break-ins at the senior community I mentioned earlier started with a woman taking pain medication. How was she targeted? Her prescription bottles were visible from outside; they were sitting on her kitchen window sill. Locked or not, it's not safe. Her window was smashed and the bottles were taken. The thief never actually entered her home, and yet, he took her pain medication. Obviously, losing pain medication could prove very problematic, but sadly, a thief isn't the only way they can be taken.

We've already discussed the idea of a safe, and keeping meds out of the view of doors and windows. Realistically, though, where do you keep your day-to-day medication? My personal choice is to keep only a day's worth of medication on me. I have nearly all of my prescription medication in my safe. Then, I keep my non-prescription items as well as about a week's worth of pain medication, in a top-secret place somewhere in my home. Let's just say, it's not in a medicine cabinet or any other place where one might typically store medication.

Why? I am extremely cautious about my medication falling into the wrong hands. Whether it be a friend, family member, plumber, locksmith, tv repairman, whoever... no one knows where my meds are kept, nor would they ever accidentally come across them. As for my single day's supply of meds, they're always right with me. If you're planning to be away for short time, a small pill container can provide access to meds in your nearest pocket. Another convenient way to take a small amount of medication with you? Tiny re-sealable bags, called "Pill Pockets." They're for sale with various names at any drug store and all over the web. If you want/need a slightly larger bag, I have seen bags meant for jewelry at one of those discount chain stores. Additionally, you can use what is referred to as a "snack size" bag, sold in all grocery stores. Half the size of the standard "sandwich" bag, these bags will hold what most patients would need, for an entire day--or longer. Once you have your pill bag, it can be stored anywhere, pocket, wallet, purse. Wherever you choose to put them, make sure your meds are always with you, but not easily spotted.

Treat your medication as valuables. Take it from me, this is the safest way to handle your medication, even at home. I'd guess that most pain patients know the value of their medication, but it's still worth mentioning here. Wherever you think people are likely to look for your medication, don't keep it there! Thieves would obviously check the medicine cabinet as well as shelves in your closet, jewelry boxes, etc. If you can think like the bad guys, you can elude the bad guys.

You Always Hurt The One You Love...
I'll go ahead and admit something now, for the benefit of everyone else. In their youth, several of my family members abused street drugs, such as marijuana. And honestly, I have no idea what they're up to these days. I guess my point here is, nobody can know that, really, can they?

When I became a pain patient, I was far too open and honest with nearly all of my family members. Mostly because I was scared, and wanted support. So, all of them, including the sketchier ones, knew I was taking Vicodin. I was shocked when one of these people remarked what a 'fun high' he got from Vicodin. It made me sick inside, but I said nothing. Then, this same person asked if he could have one a few weeks later. I was so shocked, I didn't know what to say. I muttered something about running low and that I couldn't spare any. What do you say to a question like that? I went home and sobbed for a while, then tried to figure out what to do. I was very fragile back then, admittedly.

Then it hit me... I told the most talkative (ahem, gossipy) family member about what happened, knowing my feelings would soon be known to everyone. I stressed how much that question hurt me. Then, I made it clear that I didn't think that taking pain meds like Vicodin was in any way fun. Even more, I didn't want someone to ask me for them, like they were some kind of party favor. It totally discounted what I was going through. Even worse, it made me wonder whether he, or anyone else in my family, thought this whole pain thing I was going through was some kind of joke!

Nowadays, of course, my reaction would be drastically different. I would've probably calmly but rationally explained the plight of the pain patient, 'til he was bored to tears, and went elsewhere looking for something to get high on. I share this story for a simple reason: Friends and family may seem supportive, but the reality is, you can never 100% know anyone's penchant for drug abuse. Some may privately judge you for taking pain medications, while others secretly wish they knew where you keep your 'stash.' It's a sickening thought, and believe me, I never would've felt this way, til I was directly confronted with the issue. Call me jaded or call me enlightened; either is fine with me, so long as my medication is safe.

I believe there are two reasons I was approached directly about my meds and this person didn't just try to sneak some, on the sly: (1) He wouldn't have had access. Even at a friend's or family member's home, I always keep my meds right with me. If they happen to be in a purse, that purse never goes out of my sight, for any reason. Don't feel pressured to give up your purse, even at a fancy shin-dig. It's your safety that's important, here. (2) I have never been the type of person to judge what other people do. I've seen people smoke pot and drink to excess. I've never really cared what people around me do, so long as they are safe about it. I've driven people home a time or two, just to be sure they arrived safely. This family member obviously thought I'd be 'cool' with his request for my pain medication, merely because I'd never expressed disapproval over his past drug abuse. Realize that most people will not be this upfront about their desire to separate you from your medication. Protect those meds like the life-saving miracle that they are!

Use my experience as a warning. Now, you have time to prepare yourself for the possibility of this happening to you: (1) Think of what you would say if someone you care about approached you for a pain pill, even if they came up with an excuse, like a toothache or menstrual cramps. Know that if you share meds with them, you are risking your care and they will likely come back for more. (2) Realize it is far more likely for people to take your meds, behind your back. Take every precaution--it's better to play it safe, than have to try to explain to your doctor what happened. Or, worse yet, be pushed into a situation where you're forced to file a police report about an incident with a family member, in order to ensure your doctor will continue to trust you and prescribe your medication.

Need-To-Know Basis.
Since my eyes were opened in this most unfortunate way, I've decided that it is nobody's business what medication I take, or even that I take medication for my pain. Not only do I leave the topic of meds completely out of the conversation with just about everyone outside the pain community; certain people haven't been to my home ever since 'the incident.'

Even those who are invited to my home are not given an all-access pass. My bedroom door is generally closed and there is also a lock preventing anyone from even gaining access to the area where my safe is kept. I take this issue very seriously, because loss of medication is such a serious issue. Your doctor and your pharmacist count on you to keep your medication safe. Any careless behavior could mean you have a harder time getting pain medication in the future. Believe me, it happens; there are many sad stories out there. In fact, a recent articles that say the most common way young people get access to pain medication is through a friend or relative. It makes sense--just be careful!

Strengthening Safety at with Other Medical Professionals

other than your pain management physician

exactly

opioid pain medication."

and

Pitter-Patter of Little Feet... or Paws.
Adults, or even teens in the home, are one thing. But, what about small children or pets? Obviously, the strong opioid pain relievers which are intended for Intractable Pain sufferers can be dangerous, even to a grown man. It makes sense that they can be deadly to young children and pets. Did you know that even over-the-counter pain relievers can kill a cat or small dog? According to the American Veterinary Medical Association, the most common poison small animals are exposed to is medication. Over-the-counter medication is just as dangerous to young children. When it comes to prescription medication, especially pain meds, keeping them out of reach of children and pets is particularly important.

In 2010, pain medications were the second most common poison exposure addressed by the National Capital Poison Center. (The most common exposure was cosmetics or personal care items.) Last year, 55% of all the calls received were regarding medications. Pain medications, and prescription medications in general, are far more dangerous.

According to a 2008 study, the average age of kids ingesting meds meant for adults was 2. They were often toddlers, discovering the medication during exploration of their environment. The study brought to light many ways that children gain access to the meds, unintentionally, providing important ways to prevent infants, toddlers or pets from accidentally ingesting dangerous pain medication. It's important to:
- Understand child-resistant isn't the same as 'child-proof'--a child may still be able to open the caps.
- Realize that a high shelf or cabinet is not a deterrent to young children--they can climb up on just about anything, making locked storage vital.
- Discard unused medicine--if you don't need it, why have it around? (See more information on proper disposal.)
- Take meds with you if you're called away--never leave them within a child's reach, even for a few seconds.
- Keep purses and bags out of reach, including those belonging to other people
- Inform friends, relatives and babysitters about these dangers; it's just as important as taking precautions yourself.
All of these tactics are really about common sense, but as every pain patient knows, the occasional pill does spill. As the owner of 2 dogs, when this happens, it really scares me. I feel compelled to do what I can to pick up whatever I've dropped, as quickly as possible. However, we all know that most pills are round. They don't just drop flatly to the ground--they roll. Because of my spinal issues, there are times when I am simply unable to get down on my hands and knees to go searching under furniture for a dropped pill--which always seems to be deliberately hiding from me! So, what can be done to keep pets and young children safe from dropped pills?

First and foremost, try to pick them up yourself, as soon as possible. If you can't, then you should:
- Ask a loved one or caregiver for help, immediately, if they are available.
- Remove pets or children from the area, until someone else can retrieve the pill.
- Have someone vacuum your home and any vehicles you ride in, thoroughly, at least once per week (moving/vacuuming under all anything that pills could roll under).
Because just one dropped pill can kill a child, some Intractable Pain sufferers prefer not to have young children in their home. It's a difficult choice, but such a sacrifice does ensure children are safer. According to the study mentioned above, nearly all of the accidentally ingested medications were prescribed for an adult in the household. Furthermore, 92% of the meds were ingested by children in the home. Based on these statistics, it may be the safest choice to keep young children out of such an environment. If the child in question happens to be your own child, obviously this is not an option. Vigilence is necessary, to prevent a serious accident.

When it comes to accidental ingestion by pets, the medications that are most appealing to pets are those with a sugar-based coating (such as ibuprofen) or a gelatin capsule or 'gel-cap' (commonly used for antibiotics and non-prescription supplements). Obviously, these smell like food to an animal, and are thus the most dangerous to them. This does not mean other medication is safe, left on the floor, however. Keeping this information in mind will help pet owners keep their home safer for their animals.

Strengthening Safety in the Car

Lock It, Hide It, Keep It.
Just like safety in the home, common sense guidelines keep you and your medication safe, in the car. The Los Angeles Police Department released simple guidelines: Lock It, Hide It, Keep It! Always lock your car and ensure the windows are fully closed. Don't leave your medicine or anything of value where people can see it--this includes things you typically keep in your car, such as a GPS which you affix to the window, as well as CDs. Hide these items out of view of would-be thieves--or better yet, when possible, keep them with you. People have broken into cars just to grab a pair of sunglasses!

Your Littlest Passengers.
Whether medication is dropped in the home or in the car, it is equally dangerous to children and pets. If you ever have toddlers, dogs or cats in your car, it's important to be sure they're safe. In just seconds, your little passengers the can find whatever is on the floor of the vehicle. Ensure the car is frequently cleaned and vacuumed by someone you trust. And, of course, whenever possible, pick up dropped medication before it becomes a hazard to anyone's safety. Because of frequent temperature changes, it is not a good idea to store extra medication in your glove compartment. I find it helpful to keep a small amount of fast-acting medication in a tiny container, in my purse, as a backup. Now sold at nearly every pharmacy chain and Amazon.com, I keep a couple of pills in a tiny resealable bag. They can be extremely useful--stick a couple of extra meds in your wallet, pocket, you name it.

Know Your Rights.
Being pulled over by the authorities is a common fear among even the best drivers; for pain sufferers, this is more of a genuine concern. How do you explain the pain medication you have in your car? Several relevant issues have been addressed above, but obviously, there are greater concerns than just what container to put your medication in. There are much larger legal issues that truly would be best handled by an attorney. So, understanding that I am not an attorney and that the advice in this article is in no way a guarantee, let's address some of these issues.

According to the Flex Your Rights web site,
and the accompanying DVD 10 Rules for Dealing With Police, there's quite a lot you can do, to protect yourself:
- Rule #1: Always Be Calm & Cool - A bad attitude guarantees a bad outcome.
- Rule #2: Remain Silent - What you don't say can't hurt you.
- Rule #3: You Have the Right to Refuse Searches - Saying 'No' to searches can't be held against you.
- Rule #4: Don't Get Tricked - Remember, police are allowed to lie to you.
- Rule #5: Determine If You're Free To Go - Police need evidence to detain you.
- Rule #6: Don't Expose Yourself - Doing dumb stuff in public makes you an easy target.
- Rule #7: Don't Run - They'll catch you and make you regret it.
- Rule #8: Never Touch An Officer - Aggressive actions will only earn you a more aggressive response.
- Rule #9: Report Misconduct - Be a good witness.
- Rule #10: You Don't Have To Let Them In - Police need a warrant to enter your car or home.
All of these rules are words to live by. They were developed by a former police officer who really knows his stuff. When the authorities pull you over, get out your license, insurance and registration--be prepared to show them to the officer when asked. Put your pain medication out of sight, such as in the glove compartment or in your purse. Zip your purse closed. Even if you have a shiny cell phone sticking out, they could say it looked like a gun and thus had 'probable cause' to search. Don't give them any reason to want to see what's in there.

As the officer approaches your car, roll down your window and keep your hands on the steering wheel, where they can see them. Smile. Politely ask why you were stopped, even if you think it's obvious. Don't say anything else. If they engage you in a guessing game, by asking "Why do you think I pulled you over?" Remain calm, say you don't know. If they ask further, stand strong and nicely repeat, "I don't know."

They can be really forceful. If an officer leans into your car and asks, "You don't have any weapons in there do you? Mind if I take a look?" Questions like this are meant to throw people off-balance. You may be tempted to emphatically say, 'No! Of course I don't have any guns!' The natural inclination, then, is to prove it. Police know this; don't fall into their trap! Instead, when posed with such a question, very calmly say, "I do not consent to a search." No explanations, keep it simple. Remember they are trained to shake your confidence.

Trying once more to get under your skin, they may say things like "You know, innocent people consent to searches..." Hold your ground. Police also often ask compound questions to obfuscate meaning--one with a 'yes' and one with a 'no' answer. Don't get tricked! Just state your position calmly, and do not get entrapped. Smile and repeat yourself: "I do not consent to a search." If you give in, your rights immediately go out the window. Anything they find can, and will, be used against you.

As an Intractable Pain sufferer, who among us can spend even one night in jail, while a mess like this gets sorted out? Don't put yourself in a situation where you need to prove your innocence. Remember, if they don't step into your door, they cannot find anything. Knowing your rights can save you lots of undue stress and even pain. Think you'll forget this information, in the moment? Write these tips on an index card and put it in your glove box. Refresh yourself, if necessary. The officers always seem to take forever to approach the vehicle--it'll give you something to do.

Additionally, memorize your Miranda rights--they read them to you for a reason! "You have the right to remain silent. Anything you say can and will be used against you in a court of law. You have the right to speak to an attorney. If you cannot afford an attorney, one will be appointed for you. Do you understand these rights as they have been read to you?" Even though these are usually only read to you if you are arrested, these rights sum up all the areas of a traffic stop that are important, as discussed above. Keeping these in your car's glove box could also prove beneficial.

Other Useful Phrases: "Am I under arrest, or am I free to go?" "Am I being charged, and if so, with what?" "I retain my fourth amendment rights against unreasonable search and seizure." These can all be useful phrases, but remember, Rule #2, above all else. If you continue to talk, they will continue questioning you. Whether in your car, your home or at the police station, remain silent as much as possible. Even if you're just expressing your rights, you can unnecessarily lengthen your contact with the authorities. And, the police don't especially like having 'rights' thrown in their face. Don't rattle them all of, just to show what you know. If they continue to press you for answers, the most important phrase is: "I do not wish to be questioned without a lawyer present. I want an attorney." Remember: Say only as much as is necessary, to get the heck out of there and go home!

Be Prepared for the Worst.
Even more scary than being pulled over, how should we, as pain patients, handle the possibility of being drug tested? Whether at the scene of an accident or because an officer believes you're driving under the influence, there are many important tactics you can use to protect yourself. There's an excellent card with your rights printed on it--downloadable from the American Civil Liberties Union. It's a very detailed paper with small print, covering every possible scenario. Read it thoroughly, and better yet, keep a copy in your car. (An easier to read copy is available at the ACLU web site.)

A lot of what is on the ACLU card is similar to the 10 rules listed above--just in greater detail. Some additional things to keep in mind:
- If you're pulled over, you can refuse to consent to a search. However, if police believe your car contains evidence of a crime, it can be searched without your consent.
- Both drivers and passengers have the right to remain silent. Many times, pain patients are passengers. If you are a passenger, you can ask if you are free to leave. If the officer says yes, sit silently or calmly leave. Even if the officer says no, you always have the right to remain silent.
- If you are arrested, do not resist, even if you believe the arrest is unfair.
- Say you wish to remain silent and ask for a lawyer immediately. If you can’t pay for a lawyer, you have the right to a free one. Don’t say anything, sign anything or make any decisions without a lawyer's advice.
- You have the right to make a local phone call. The police cannot listen if you call a lawyer.
- Prepare yourself and your family in case you are ever arrested. Memorize the phone numbers of your family and your lawyer (Or keep a list with your license.) Make emergency plans regarding your medication; discuss this with a lawyer to determine the best way to ensure your life-sustaining treatment. Also discuss the fact that you are disabled with an attorney and find out the best way to proceed.
- If you feel your rights have been violated, know that police misconduct cannot be challenged on the street. Don’t resist officers or threaten to file a complaint.
- Write down everything you remember, including officers’ badge number and patrol car numbers, and any other details. Get contact information for witnesses. If you are injured, take photographs of your injuries, after seeking medical attention.
- File a written complaint with the agency’s internal affairs division or civilian complaint board. In most cases, you can file a complaint anonymously if you wish.
  Call your local ACLU. And, of course, any questions you have should be addressed with a lawyer that is well-versed with the laws in your state. Arm yourself with quality information, so you can be as safe as possible, behind the wheel.

Strengthening Safety When You Travel
Pain sufferers realize that travel is difficult on the body, but it doesn't have to be as stressful. When it comes to travel, ensure you have everything you need. Make sure the person you are traveling with understands your limitations, and be sure to speak up, if you need to change plans for any reason. Being open and honest will go a long way towards making your trip more enjoyable.

Planning Ahead.
When it comes to packing, every pain sufferer has concerns. How exactly do you ensure safe travel--for you and your pain medication--with the ever-changing restrictions? Your first stop should be the Transportation Security Administration (TSA) web site. Be sure to check the current rules for disabled travelers. Also, visit check the TSA home page for any possible changes to these policies; up-to-the-minute changes can be found there. Ensure you are packed and ready to leave with plenty of time to spare. At least four hours before your scheduled departure, check the TSA site. Nobody wants to leave home without knowing there are unanticipated delays at their departure terminal! This web site can provide a whole lot of peace of mind.

Beyond the TSA, there are many technological advances that make travel easier. If your departure gate has changed or the departure is delayed for any reason, most companies now have automated phone systems to provide this information. You can simply call the number listed on your ticket. When making your reservations, online or by phone, check to see if you can receive automatic updates. If you provide a mobile telephone number, you can receive text messages or even phone calls with information regarding your departure. Then, as your departure nears, you will get the information you need.

Luggage and Packing.
As a pain patient, you may feel as though it is easier to put your medications into your checked luggage. Though this seem easier, it opens you up to serious risks, to both your health and the safety of your pain medication.

Difficult or not, carry all of your medications with you, at all times. I find it easiest to keep my medications, as well as my money and identification, in a purse. (Guys, a small zippered bag works just as well.) When I travel, especially if it's for a week or more, I take my original pharmacy vials with me. I also have a weekly pill sorter, to divide my meds into, for easy access. So long as I've got the pharmacy paperwork with me, there can be no doubt that it's mine.

Paperwork.
If you hadn't already guessed, I also bring copies of my documentation from the doctor's office, whenever I travel. You should too! If your doctor doesn't have an annual document with proof of your diagnosis and need for pain medication, have him write a letter, similar to the agreement discussed above. Keep a copy of your diagnostic/prescription paperwork right next to your medication--it helps you answer any questions later on, if need be. Additionally, make an extra copy of this paperwork, and place it in your checked bag, in case you misplace the copies in your carry-on.

Because I'm cautious by nature, I also make a copy of my license and/or passport, and place them with the medical papers, in my checked bag. You can never be too careful! Proof of who you are is important, no matter where you go. Plus, it provides people with your name and address, just in case your bag is lost!

Another tip: Because I find it easier, I usually place any non-essentials, including comfort items, snacks or time-passing favorites in a separate bag--usually in a wheeled, airline approved carry-on bag. Whenever possible, I try to stow my 'essentials' purse inside the larger 'non-essentials' bag, when it is not needed (such as on my way to the airport). However, for the duration of the flight, I keep that purse with me, and stow the carry-on at my feet, or above me. I never have my medication, money or identification out of my sight!

A final note on departure times: Leave earlier than normal for your destination. I generally give myself approximately two hours for a U.S. destination, to ensure I won't miss my flight or cruise. Why? You want to ensure you have additional time for check-in at the airport, cruise ship, etc. Wherever you are going, assume the check-in process will be a bit longer than normal, because you will be up-front about your disability, your medication and your need for any special assistance/processes at check-in. My policy has always been: Assume the worst, hope for the best.

Checking In. Whether for a flight or a cruise, it's important to let people know, as soon as possible, upon check-in, that you are disabled. Even if you do not believe you need any special assistance, letting people know you are disabled at the outset will prevent any issues during the screening process. How do you do this? Smile, ask how their day is going. Then, calmly and politely explain you are disabled and what extra precautions need to be taken, if any. Want to feel more official, as you discuss the situation with TSA? Why not invest in an inexpensive medical alert bracelet or necklace, to wear when traveling?

For patients with a medication pump/stimulator or any other fragile medical equipment, it is always best to tell them, at the outset, where this device is located. Taking the guesswork out of an already tense situation makes things easier for you, and the screener. This is also the time to explain that you require a special manual 'pat down' screening. Explain that you need a private screening; no wand, no x-ray machine. Note: A private screening is the right of every traveler, disabled or not. For this reason, be sure to tell them you require this, so that your very delicate equipment is not damaged. Most TSA workers know the drill; they deal with thousands of people every day, some of them are bound to be pain patients.

Tip: If at all possible, bring a fact sheet regarding your device with you. This helps explain what it is, what it's for, etc. If you do not still have the paperwork that came with the device, there is sure to be something similar online. The simpler the better. Many such devices have a long, multi-page manual. They also have a slick, one-page marketing sheet, describing the device in simple terms. Always go for the simple, one-page explanation.

If at any time your special request is not honored (or someone appears new or ill-informed), don't back down. You need this special request, or you wouldn't be asking for it. Smile, then confidently explain your needs and why you need them.
I have heard from several frequent travelers that TSA Agents do not always provide a private screening in a timely manner. Screeners have explained that due to workload and number of screeners available, a private screen would take so long, the person would likely miss their flight. In these cases, pain patients have consented to a pat down screening in the open. This can be quite unpleasant, it not embarrassing.

Keeping this in mind, if you truly want a private screen, plan ahead, giving TSA the extra time necessary to do so. If you travel out of a specific airport the majority of the time, why not call TSA and enquire about the time required to provide a private screening, to you, a disabled traveler? It never hurts to ask.

If your airport experience is less-than-ideal, don't be afraid to ask for a supervisor's assistance, as calmly and politely as possible. Anyone can have a bad day; we've all been there. Remember, being a TSA agent is a difficult job; they're keeping us all safe as we get where we need to go. You know the saying about the flies and the honey. Be nice and things generally go much better than if you explode. (Believe me, I know from experience--it's not pretty!)

One final note: If you ever feel you've been treated unfairly by TSA, it is your right to report the issue. Visit TSA's Traveler Redress page for more information. Additionally, all travelers should check out TSA's Civil Rights for Travelers. Travel can be a nightmare, but the better prepared you are, the easier it's bound to be! And, it'll be safer, as well.

Download a simplified guide, containing all the tips in this article now.

Written: December 30, 2010. Updated: February 10, 2011

Anti-Opioid Sentiment Harms Intractable Pain Patients

2010-11-01T04:27:00.000-07:00

by Heather Grace

Why must I find yet another anti-opioid story that serves to increase an ever-tightening grip on options for care? It's a question I seem to be faced with a lot more, lately. That doesn't change the reality of a life in pain. Intractable Pain patients are suffering needlessly, while the world keeps on doubting us all.

People who are in severe pain count on their pain medications. Prescribed meds like Oxycontin keep them alive. They truly have no other choice; take the medication or suffer a miserable existence leading to an even more excrutiating death. Nobody wants to tell that story... it's not seductive--it doesn't shock people into screaming at the television.

The only issue that's focused on? The evils of opioids. Somehow, the fact that this medication is being abused gets swept under the rug. When you want to scare someone, you tell them about all the poor, misguided teens who are falling victim prescription medication like Oxycontin.

Nevermind the fact that the medication was gotten from a drug dealer, illegally. Sensationalized stories forget to mention that many young people with addictive tendencies will do whatever drugs they can get their hands on. Oxycontin is just one of many substances that are being abused.

Still, these stories lead to a frenzy on the part of well-meaning but ill-informed citizens. They scream: Why doesn't someone DO SOMETHING to save the children? The reality is, these medications are already very tightly controlled; moreso than anyone would ever imagine.

Let's look at just one example: the Drug Enforcement Agency (DEA). The DEA tracks doctors and also has a record of each patient who is prescribed opioid pain medication. They can, and often do, go after even the best pain doctors in the country. The mere threat of the DEA, as well as medical boards throughout the U.S., have done a lot of damage. Nearly all pain management physicians today are forced to wonder if it's worth the risk to treat their very ill patients. This becomes a serious threat to patient care.

It would be great if people who trashed opioid pain medication knew the whole story, so I would like to help tell it. Yes, that's right! I am an Intractable Pain patient turned Advocate!

There has recently been a reformulation to Oxycontin. (April 2010) It is said to be less effective when drug abusers crush the pills and then inject or snort it the medication. This drug did not go through the formal FDA process in order to become approved for use. Instead, all the hyped surrounding Oxycontin helped to push it to the market.

The old version of Oxycontin is now off the market. The response has been anything but positive. People who are just trying to get high will always find a way. The saddest part? Even the FDA says that addicts can merely use larger quantities to get the job done!

The real problem is that the new formulation of Oxycontin is far less effective in treating Intractable Pain patients. The pill is clearly less effective at providing pain relief. I have seen the effects with my own eyes, in someone I love dearly. All of this was done in the name of safe medication. I can say, with confidence, that well-meaning people are using the word "safe" without realizing the ramifications to our very health and yes, our safety.

Many more patient deaths occur due to under-treated or even completely untreated pain than due to misuse/overdose. Pain causes reduced mobility and a consequent loss of strength, disturbed sleep, immune impairment and increased susceptibility to disease*. Any of these conditions can lead to more serious medical problem.

Worse yet, under-treated, severe, chronic pain leads to heart attack or stroke, a condition called Cardiac Adrenal Pain Syndrome. Then there are those who cannot get treatment and commit suicide.

I know several other pain patients who are getting some degree of relief after years being treated by bad doctors. The number of so-called "pain management physicians" who completely shun opioid medications is astounding. So many doctors are actually afraid to prescribe them. Why? The big, bad DEA lurks in the shadows.

It is astounding how long it takes to find a doctor who cares enough to treat serious pain! Patients try and fail to find help year after year. It's no wonder so many give up and end it all.

Even the ones who eventually get help admit they seriously considered suicide. When the pain gets bad and no one listens, it becomes hard not to think about it. The lucky few, like me, eventually stumble across a caring physician who is able to better manage their pain. However, it is still a life of constant pain... Pain that needs to be treated!

When you talk to most people, they readily agree that their greatest concern at the end of their life is: a peaceful death.... one without suffering. However, people with conditions like Intractable Pain, Peripheral Neuropathy, Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome (Types I and II) or Fibromyalgia live a lifetime in pain. Don't people with these conditions deserve some degree of relief? Must they suffer in silence and die a miserable death, feeling, in the end, that no one cared?

Well-meaning people may want to sanitize the world for our protection. However, there is one thing these people seem to forget. As a good friend said to me: Pain medication is for pain patients, just as insulin is for diabetics.

Yes, addicts will abuse drugs. Whatever they can get their hands on. But does that mean we should further restrict access to something that is already near impossible to get? It took me seven years to get a real pain management physician. Yes, SEVEN YEARS! That length of time in severe pain should be a crime!

Before then, I was actively trying to find a way to kill myself. It wasn't a decision I came to lightly. I had tried everything else I could think of first. Physical therapy, acupuncture, occupational therapy, over-the-counter medication, muscle relaxers, non-opioid pain relievers, stretching machines, TENS units, sound waves, spinal decompression, ultrasound... you get the picture.

After being through all of this, with no relief, I wanted to just lay down and die. I tried to think of a way to commit suicide where I could do it quickly, without in any way impacting anyone else. The biggest reason I am still here is because I couldn't find a way to end it all that was definitely going to work out this way!

A year later, I found a great doctor. I am thankful I managed to hang on by a thread, but many do not! Many commit suicide, giving up after the pain gets too great to bear. Then there are those who are crying and screaming their way through each long, difficult day. Still actively looking for their miracle. That's what this doctor was for me... a miracle. The one and only answer to the problem no one else had ever cared to solve.

Many Intractable Pain patients still do not have a physician who will treat them, where they live. Many have to drive hours or even fly out of state to get care. It is a far more serious situation than any non-pain patient could possibly contemplate!

In fact, it trumps any need for restricted access to opioid pain medication. If you build a better mouse trap, guess what? The rats get bigger, meaner and angrier. And, in the end, yes, they still find a way to get their cheese! The addicts or dealers don't go through legal channels like pain patients do, and they never will!

However, this desire to keep pain medications out of the hands of drug-seekers has gotten completely ridiculously over-wrought with problems. The DEA and state medical boards should not jeopardize those of us who have 20 or more years of unrelenting pain left to live through! Sadly, that doesn't mean anything to them. They still chase after the supposed bad guys.

Meanwhile, these saintly physicians are just trying their damnedest to help people--while not going insane from the pressure. Like it or not, any doctor who will treat "us" lives with the constant fear. They work under an undeserved cloud of suspicion and misunderstanding. It's no wonder so many are closing their doors!

A change to the formula of Oxycontin is just one case of well-meaning people making poor decisions, mostly because they don't have all the information. Yes, before I was a pain patient, my gut reaction would be very similar to most people. I would probably still be thinking it was important to keep all these seriously heavy duty drugs out of the hands of the bad guys. I had no clue what was happening to pain patients all over the country.

Now that I do, I can tell you how BAD it truly is. It's downright ugly! It is way past keeping these meds from addicts. The restrictions in place actually keep necessary medication out of the hands of the pain patients they were intended for.

Please, I urge all of the well-meaning people out there to think before they act... because all these changes are severely impacting our access to medication. Even worse, the number of doctors who will truly treat pain lessens each year! This creates a mountain of stress we each live all with, day by day, always fearing the worst! Because, the worst is already happening! Right here, right now.

If you want more information, please look at the American Pain Foundation's site or see patient stories on their special site: The 10,000 Voices Campaign. There are videos all over You Tube that are very similar, from pain patients who passionately tell their stories.

Drug abuse is a serious problem, to be sure. However, consider what untreated pain is doing to people like me, all the time. Intractable Pain ruins innocent lives day after day... people who just want treatment for their misery and suffering. This is a far more serious story; too bad no one seems to really hear it!

The reality of the situation is, only the BAD GUYS are winning this fight. Pain patients lose. Caring doctors lose. Anyone who is in pain but isn't sure what's wrong with them loses. They get misdiagnosed or just plain turned away. Their fate? To be deemed a freak, liar, miscreant, faker. Then, if they are persistent and just lucky enough, maybe one of the doctors will take a chance, and really look at what is going on.

If not, they are destined to dance on the edge between life and death, wondering whether it's time to just give up and let death win. Tell me... who among you really wants to live like that?

Not me! But guess what? I have no choice. I'm an Intractable Pain patient! I'm labeled, doubted, disbelieved, you name it. I just continue on, living as only a pain patient turned advocate does:

Trying to cope with the pain and do something productive.

Trying to convince just one more person at a time to see what's really happening to us.

Just one more today... maybe you?

How to Find a Good Pain Doctor - Tips & Secrets You May Not Know About

2010-10-10T22:59:00.000-07:00

by Heather Grace

Living each day in pain is hard enough. Being diagnosed an illness like Intractable Pain can be really scary. Obviously, you want to find a doctor quickly, and get the pain under control. That would be everyone's next logical step. However, as any persistent pain sufferer knows, it's really not that simple.

In this era of the Drug Enforcement Agency (DEA) and various state medical boards becoming watchdogs over prescription drugs, it can be hard--if not impossible--to get treatment for even those most serious diagnosis. If you've been diagnosed with any condition that causes severe, chronic pain, you've probably suffered far more than anyone should, in the system, just trying to get adequate pain management.

Conditions such as Intractable Pain, Reflex Sympathetic Dystrophy (RSD), Complex Regional Pain Syndrome (CRPS) Types I or II, Fibromyalgia, Peripheral Neuropathy, etc., often go undiagnosed or are ignored by family practitioners, chiropractors and even those claiming to be "pain management" physicians. I'm not saying they don't care about patient suffering. Most do care. However, the ugly truth is, far too many are unable to adequately care for such people. Worst still are the doctors who are--for various reasons--unwilling to treat these illnesses.

If you're suffering, afraid and know your pain is becoming harder and harder to cope with, what is the answer? Where can you find the best pain management physician in your area? Obviously, the answer isn't simple. With perseverance, however, you can find true pain management... just like I have. I am not going to pretend my story isn't a nightmare of both medical neglect and misdiagnoses. However, there is good news! Through my more than 10 years dealing with pain, I have learned a great deal about what works, and what doesn't.

How to Find a Good Pain Doctor:

Documentation. -- If You're In Pain, Be Ready To Prove It!

Yes, it's a bit twisted. If you're dealing with serious pain, it doesn't seem fair that you should have to provide 'the facts' in order to get good treatment. You must get over this and just realize it's part of the process. Think of it from Dr. X's point-of-view. Most doctors, even the good ones who want to help you, are afraid they could be criminally prosecuted. Providing a prospective physician with documentation that backs up your pain will protect you. And, in doing so, it provides your potential new doctor with evidence necessary to feel safer taking you on, as a patient. This helps you to get the pain relief you are seeking.

What will you need? First and foremost, keep everything that helps document your condition, in black and white! If you've had chronic pain for years, somewhere along the way, you must've received sort of written proof of your suffering. Keep a file of such information handy.

Your files should include: all x-rays, MRIs, CAT scans, the accompanying reports, each physician's diagnostic information and any other hard facts about your condition. Be sure you also have a list of contact information for every physician you have ever seen, even those you only saw for tests, like an MRI. There are other hard facts you can compile, besides what you get from a doctor.

For instance, you could keep a pain journal. Document each day's pain: a list of physical of your symptoms, describing how your pain feels and how long it lasts, including a rating from 0 to 10. Another good idea? Include your blood pressure and pulse rates, along with your pain rating. People in pain naturally have elavated blood pressure and pulse rates; generally far above the norm.

Keep any other personal records you can. Take pictures of your scars, or pictures that show areas of your body that are visibly swollen/inflammed. Even if you don't think your pain areas are swollen, try taking a photo and seeing for yourself if there's any sign of swelling. My doctor took photos of my head, neck and upper back and the swelling was very apparent, even though I didn't realize it, before I saw the pictures!

HIPAA and Your Medical Records. -- Do I Need All My Records?

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) gives patients the right to access their own medical records. Post-HIPAA, most medical service providers require patient to sign a HIPAA authorization, formally requesting a copy of the medical record. Be aware that HIPAA prohibits charging the patient for the costs of locating and retrieving the medical record. While a "retrieval fee" cannot be charged, each establishment may elect to charge/not to charge patients for records, at their discretion. Laws may differ from state to state, so it's best to review your state's laws regarding fees.

Things get really complicated when you try to get older records. Federal programs, such as Medicare and Medicaid, require records be kept at least 5 years from the date of the last patient contact. HMOs or other healthcare networks may require providers to maintain records for a certain period of time.

What does all of this mean? Time is of the essence! It's important to try and retrieve your records as soon as possible, to ensure your information does not get destroyed! Review your state regulatory board’s requirements and/or your insurance provider's rules regarding record retention.

Also, when a physician or other provider closes/relocates, rules may be different. Look into any special state provisions governing handling of the medical records. In these situations, it's always best to get your records, as soon as you are aware of the change. It's your duty to be your own advocate concerning your medical records. After all, no one else needs them as much as you do! Who should you ask for your records? Everyone!

Records: Hospitals, Physicians and More. -- Get Everything, Quick!

If you've ever been in the emergency room and/or been hospitalized for any length of time due to your condition, you must follow up with these providers and get all documentation. Sadly, it may be the only way to prove you've been given morphine or similar stronger medications to treat your pain. If any of these visits included x-rays, MRIs or CAT scans, specifically ask for a copy of these films. (This may prove costly, if printed on actual film. If cost is an issue, when possible, get them on CD. This is generally cheaper and could even be free.)

Be prepared to get all your files from every doctor you have seen, throughout your pain treatment. Always ask for x-rays, MRIs and CAT scans, on disc or printed on film. Realistically, it is best to have records dating back as far as you can, regarding any surgeries, illnesses, etc. That includes traditional doctors, previous pain doctors, holistic healers, support groups, everything!

A Complete Treatment History. -- What Do I Need?

Having a complete treatment history is very helpful. You will find that pain doctors want a complete history of every remedy you have tried. This includes every medication you've taken for pain, every physical therapy modality, acupuncture, chiropractic care, etc. For example, if a prior doctor treated you with XYZ medication, then you will have proof of this.

Believe it or not, this documentation can save you a lot of hassle, when dealing with insurers. Many insurers require patients to have what is called step therapy. Believing that it saves money, certain drugs must be tried first, before you can get coverage for a specific medicine that may be more costly. Records of the medicines you've taken can prevent unnecessary squabbles, getting the insurance to cover a new medication; especially when you can prove you've already tried the others! Even more importantly, this gives a doctor a picture of the hell you've already been through.

The bottomline: If you have the documentation, then physicians will see how hard you've tried to get adequate pain relief. Even more than that, they will realize you are serious about pain management, and are not just a drug seeker, who hasn't tried any other treatments. It's an unfortunate label, but because of the fears doctors have, many wonder if the new patient they are seeing is just there for meds. Records validate your situation and help avoid misunderstanding about your motives. Tip: When trying to get a complete list of medications you've used, it may prove useful to request a report from your pharmacy regarding your past prescriptions.

How Do I Find The Best Fit For My Needs? -- The Hard Truth...

If you are a patient with severe, chronic pain, chances are, you will need some sort of pain medication, i.e. opioids, as part of your treatment. This is just a fact of life for those of us with Intractable Pain, RSD, CRPS, Fibromyalgia, etc. It's easy to feel that this makes you bad or wrong or that you are somehow not as good a person as those who "tough it out" without meds. But, if you are suffering, remember this: Pain medicine was made for pain patients!

Even though we know this, it's still NEARLY IMPOSSIBLE to find the right physician. Why? It's all about fear. Sadly, you can no longer just call up a physician's office, even those who specialize in pain, and get a straight answer regarding treatment protocol. Everyone is hyper-focused on what may happen if it's the DEA or the state medical board calling, not just Joe Pain Patient.

So, here's the MOST IMPORTANT TIP I CAN GIVE YOU in this entire article: DO NOT CALL UP ANY DOCTOR'S OFFICE AND ASK IF THEY PRESCRIBE PAIN MEDICATION.

I know that sounds completely ridiculous, but think about it... Most if not all physicians are now afraid they might lose their licenses, merely because they are prescribing pain medication to those who truly need it. If you were in that doctor's shoes, would you allow anyone in your office to admit you prescribe opioids to any random stranger, over the phone? Not likely.

Even worse, anyone who asks such a question could easily be flagged as a drug-seeker, just for asking this question. The DEA has created a very real fear among even the best physicians out there. I have seen it with my own eyes! These are not easy times for the pain patient. So what else can be done? Think logically and use your best research skills... this may be a very tough process!

Your Prospective Physician's Views on Opioid Use. -- Investigate!

Either you, or a friend who's good at using the Internet (and possibly your local university library's resources), will have to do some major research on pain management physicians in the area. This goes beyond using Google or Bing to find doctors in your area who call themselves a "pain management physician" -- that's just the first step. Once you have a list of at least a dozen doctors, go on to the real work.

(Note: For the purposes of the article, I am referring to the doctor as a male, but we all know female doctors exist and treat pain as well. I just don't want to do that he/she and him/her thing throughout the article...ok?)

You must find everything you can regarding this doctor:

1. What do other patients say about him? Look for reviews throughout the internet, at sites like Yelp.com, and any others you can find, that don't charge a fee for the information. If a lot of people say he helped them, chances are, at least some of his patients are being prescribed pain medication. Some of them may say this, though you can never be sure, anymore.

Look for hints that people are satisfied with his care and think he does a good job at providing some degree of pain relief. If a good percentage of the reviews are positive, this is a very good start! If the positive response is overwhelming, you may feel confident enough to make an appointment with this doctor. However, there are several other ways to check into the doctor more thoroughly...

2. What doctor have you heard people mention at other doctor's offices, hospitals, etc? Do people think the doctors on your list are good or bad? Can they recommend any other doctors, to add to your list?

Speak to other patients who are like you--they can provide a wealth of information about the good doctors, and the not-so-good ones! Even more than that, ask some of the nurses and front office staff what they think about the doctors that their office refers patients to, for pain treatment.

Or, ask your family doctor, when he refers you, for any information he has about the doctor he recommends. Chances are, someone will be able to provide you a good referral. If that doesn't work, there are advocacy groups out there. Look for one in your area, dedicated to pain patients. Or, visit the American Pain Foundation at www.painfoundation.org.

3. What articles/groups/links does the doctor mention, on his web site? Do these provide any information about the types of doctor he is? If he lists/links to articles about prescription drug abuse or how to detox patients, obviously, this is probably a bad sign. Chances are, he's either against opioid use, or he might even be afraid to prescribe them to his patients.

When looking for the best pain doctor, you really want one who is willing to use all the tools in his toolbox. If he's unwilling to use opioid pain medications, then his bias may get in the way of well-rounded treatment. As any patient knows, trying anything and everything, until you get the right treatment plan, is the mark of a good doctor. Good pain doctors are willing and able to prescribe whatever works.

If the doctor's web site is openly in favor of pain medication (among other treatments), that's great! He's probably a good option. However, if it appears there's any degree of anti-opioid sentiment on his web site, it's important to look into the doctor further...

4. What does his C.V. (curriculum vitae), a.k.a. his resume, say about him? More specifically, what did he focus on in his research? What papers has he written/co-written? What boards does he belong to? What groups is he a member of?

This can be much more tricky. Here's a tip... if nothing on his C.V. mentions the word "opioid" or any known medications that pain patients use (generic names such as: codeine, hydrocodone, morphine, hydromorphone, fentanyl, etc.), then he probably isn't too keen on opioid pain medication.

Sadly, many pain doctors are very procedure focused. They may try various injections in their offices, including nerve blocks, epidurals, etc. There are lots of non-opioid treatments available, and yes, these treatments have helped some, patients. However, from my experience, these treatments simply do not manage nearly enough of the people who are experiencing severe, chronic pain.

A doctor with this sort of C.V. and no further "pro" pain medication evidence might be someone you consider a "backup" doctor. In other words, someone to visit only after others have not worked out. Remember, you want a doctor who treats his patients with all available methods of pain relief. A doctor who leaves opioids out of the equation has clearly taken a stand. And, it is most likely a stand against opioid use.

Look at that C.V. in even greater detail. Does the research/writings mention use of pain medication to treat cancer pain? Or end of life care? What about post-operative pain? Sounds like a good sign, right? Maybe. But... maybe not.

The sad fact is, some doctors do prescribe opioids to patients with cancer or those who are near death. Some will even prescribe these medications to patients after major surgery. However, this does not mean they will automatically prescribe to patients with chronic, severe pain. So, just because his C.V. mentions opioids, this might not mean he will treat someone with Intractable Pain, etc. You must take another step, in this case...

Look even closer at that C.V. If the research/writings only mention chronic pain in relation to non-opioid therapy, then chances are, he's wary of utilizing opioids in patients with chronic pain. What non-opioid therapies does that include? There are many. Let's go over some of the common therapies, as well as their common side effects.

Non-Opioid Treatments for Pain & Their Risks

NSAIDs, Cox-2 Inhibitors or Acetaminophen also know as Tylenol, a.k.a Paracetamol/Propacetamol--all of these can cause severe stomach problems or bleeding. Transcutaneous electrical nerve stimulation (TENS), which many say have no side effects--in reality TENS can cause skin irritation/burns, headache or numbness and can kill anyone with a pacemaker. Nerve blocks with a "localized" anesthetic/corticosteroid, which can cause permanent muscle loss, weight gain and "moon-faced" appearance. Epidural steroid injections (spinal tap), which can puncture the spinal cord or cause nerve damage. Prialt (Ziconotide) via pump-based injection, known to cause cognitive impairment, unresponsiveness and even psychosis.

These side effects might come as quite a shock. People tend to think that anything they can get without a prescription comes with little to no risk. Many also believe that non-opioid prescription medication is somehow better for you. Aren't these kinds of treatments "safer" than opioids? Not necessarily. Obviously, you must weigh the risks and benefits of all treatments when deciding what is right for you. Even vitamins and supplements have side effects. This is why all treatments for pain, including opioid pain medication, are overseen by your physician.

So, if the doctor's research/writings include any of these treatments--but none regarding pain medication--this may mean he is against the use of opioids. It's important to weigh all the information you've uncovered, before deciding on the right choice for you.

5. If all of the research thus far has not provided enough information to make an good decision regarding a doctor's stance on pain care, you may want to get access to one (or more) of the papers/research projects, mentioned on the C.V. Any university library should have access to the databases with this detailed information. Be aware that some may charge a fee for this service.

If by this phase you haven't found any definitive answers, it might be best to go on to the next doctor on your list. Once you have selected the best doctor for your needs, you want to be prepared for interaction with the doctor. Trust is key. Thoughts of the DEA loom in most doctor's minds. So, what will help increase your chances of being treated like a true pain patient, and not a potential drug-seeker?

The Actual Office Visit: A Two-Way Interview. -- Be Prepared!

When you visit a potential new pain doctor, you want to be organized, poised and as ready to talk as you are to listen. Think of this as an interview for both of you. He must earn your trust, but you must also earn his. Here are some important ways to make things go more smoothly.

First, bring your best advocate with you, whether it is a loved one, or close friend. Be sure this person is willing to talk honestly and openly about how you have suffered--how pain has impacted you. This will help reinforce the seriousness of your situation. It demonstrates to the doctor that someone other that you, the patient, sees that you are in need of pain management. It may sound like an unnecessary inconvenience, but it truly helps the doctor feel more at ease about the reality of your condition. The more you can demonstrate your level of pain, as well as your desire to get back to a normal life, the better!

Secondly, as hard as it is, remember that this visit is not just about ensuring the doctor can care for your medical needs. It's just as important to reassure the doctor regarding your intentions. You want the physician to see the extent of your illness, but also see you as a trustworthy person who just wants his help regarding pain relief.

In addition to bringing someone with you, here are some important ways to show the doctor the urgency of your situation. Have the following documents with you:

1. A list of all medications you are taking/have most recently taken to manage your pain.

2. A list with all the prescription medications you have tried for pain relief. This should include pain medication, muscle relaxants, sleep medication, anti-inflammatories, etc.

3. A list of all pain-related treatments you have tried. What holistic therapies, acupuncture, chiropractic care, physical therapy, over-the-counter medication, etc., have you tried?

4. Complete contact information for your most recent doctor (be ready to tell him why it didn't work out, as well).

* Note that you can put all of items 1-4 on the same sheet of paper, if they will fit.

5. Recent x-ray/MRI/CAT scan films, especially from the last five years.

6. A list of questions. You can show the list to the doctor, if necessary, to create an open dialogue--and TO ensure all your questions get answered! Additionally, if you have heard of any medications or treatments that you think might be beneficial to you, bring those along as well!

7. Make copies of key documents you have, supporting your diagnosis and the reports/film that supports this diagnosis. This should be just a few pages, that you will give to your physician, to keep.

8. It's not necessary to inundate the doctor with paperwork, but also have other important information from your files (as discussed above) in hand, at the initial visit. This doesn't mean your entire medical history, but key information that supports why you came to be in his office. Example: If you started with one bad disc in your low back, and now you have five, causing pain/numbness/difficulty walking, provide proof of all this. Bring physician reports which detail your diagnoses, as well as an overview of your treatment, what was prescribed, etc.

It's not essential to bring any more than 25 pages. However, assure the doctor that you will provide copies of other pertinent data, on the next visit. It may help to ask him specifically what he would like to see, at a followup appointment.

The more prepared you are for this visit, the better! Ensure that the visit includes a discussion of what does and does not work for you, from the lists you have provided. The goal is to leave the office with an idea of what the treatment plan will be, and hopefully with an initial prescription in hand--a starting point on your road to pain management.

Keep in mind that even seeing the best pain doctor will not be a quick fix. Prepare for it to take a minimum of several months before you get the right treatment, to provide pain management and some degree of relief. This will likely include prescription medication, over-the-counter items such as amino acids, and even increased use of vitamins and minerals, including vitamin D3, calcium, magnesium, etc.

Attention Readers: What do you think of the suggestions included here? Have anything to add? Any DO or DON'T to share? Please leave your comments below. Good luck and here's to better pain management for all of us!

Make September 2010 Pain Awareness Month in YOUR State! Here's How....

2010-08-30T19:27:00.000-07:00

by Heather Grace

It has never been more important for people to work together to fight the problems surrounding pain treatment. You can make a difference... How? Encourage your State Governor's Office to proclaim September 2010 as PAIN AWARENESS MONTH, (PAM) officially.

What exactly is a Proclamation?
A proclamation is an official public announcement of a celebration. State or local governments (governors or mayors) can issue proclamations. Proclamations can use dry, official language, or straightforward, simple language. The document is signed by a public official, such as the governor.

Checklist for Submitting & Securing a Pain Awareness Month Proclamation

1. If you don’t have contact information for your Governor or are not sure of how to go about requesting a proclamation type the following phrase into a search engine (like Google) see what comes up. Phrase: “submitting a proclamation request to Governor [your Governor’s name] in [state name]”

2. Once you have the contact information for state governor’s office, initiate contact and find out:
• the protocol and timeline for requesting a proclamation
• name and contact information for the administrative assistant in charge of proclamation requests
• if any other group or organization has already submitted a request for a PAM proclamation
• if there is a signing ceremony with the governor and, if so, the date and time
• how to submit some draft language (fax, e-mail, snail mail)

3. If another group or organization has already submitted a request for a PAM proclamation, ask the Governor’s office contact if your organization’s name or the American Pain Foundation can be added to the list of supporters in the proclamation language.

4. If no other group or organization has submitted a request, you can either a) proceed with submitting your request OR b) let the Governor’s office contact know you will be submitting a request soon but first want to make some contacts with other groups whom might like to collaborate with you on the request.

5. Other collaborators to consider:
• Your state’s Power Over Pain Action Network – A leader directory can be found at:
http://www.painfoundation.org/poweroverpain/default.asp?file=map.htm
• Your State Pain Initiative – Contact list can be found at:
http://www.aspi.wisc.edu/stcont.htm
• American Cancer Society Chapter – e-mail ican@acscan.org to get contact info for your state
• State Hospice Organization – try Googling “[state name] hospice and palliative care
organization”
• Local chapter of American Society for Pain Management Nursing – Chapter list can be
found at: http://www.aspmn.org/Organization/chapter_list.htm
• State nursing organization - try Googling “[state name] nurses association”
• National Association of Social Workers state chapter – Contact list can be found at: http://www.socialworkers.org/chapters/default.asp.
• Other self-help groups, i.e. Arthritis Foundation, MS Society, Lupus, Sjogrens, etc. Chapters can be found by Googling the organization’s name.

6. Complete the proclamation template, including the sample letter and proclamation, below. Fill in the blanks with the needed information and then save as a Word file on your computer so you can print it, fax it, e-mail it or mail it, as needed. If
some of your collaborators want to co-sign the letter, add their organizational name.

7. Copy/paste the cover letter into Word. Fill in the blanks with the needed information and then save it as a Word file on your computer desktop. If some of your collaborators want to co-sign the letter, add their contact information and e-signatures.

8. Even if you submitted it on-line using a template provided to you, consider sending a hard copy draft proclamation and cover letter to Governor’s office.

9. After a week, check back with the Governor’s office contact to make sure the request was received. At that time also confirm the following:
• When the final version on the proclamation will be ready
• Date, time, and locale for signing ceremony - be sure to ask is there will be an official photographer present and, if so, how you can get order a copy of the official photo.
• If there is no signing ceremony, request that the office send the finished proclamation directly to you as soon as it is finished. Be sure your contact information is included on all correspondence. And, it can’t hurt to ask if there is any possibility the Governor will pose for a photo with you (your group) at his/her convenience.

10. Convey this information to any collaborators, and make needed travel plans (if needed).

Tips for Leveraging Your Pain Awareness Month Proclamation

1. Let the Governor’s office know how you intend to use the proclamation. For example, let them know that recognition of September as Pain Awareness Month is a way to raise awareness about the under treatment of pain and the barriers to effective pain management. Give them examples of the types of outreach you plan to do in the community to highlight the proclamation, such as media coverage of the proclamation or a community outreach event. Be sure to let the Governor’s office know of any events which occur as a result of the proclamation, this will improve your chances of getting their attention for another proclamation in following years.

2. Ask them if they will issue a press release for PAM (see example at www.conqueringpaintogether.org) to the media and also on their official website.

3. Issue your own press release mentioning proclamation and/or signing ceremony where appropriate.

4. Ask any PAM collaborators who worked with you on submitting the proclamation request to issue their own PAM release, including an acknowledgment that the Governor issued a proclamation. Forward your press release and invite them to use any of the content they find helpful. Ask them to notify you if a release goes out.

5. If you submit an op-ed piece or letter to the editor, mention that the Governor/city official declared September as Pain Awareness Month. Think about using an op-ed as a way to promote your PAM events.

6. Use the proclamation as an opportunity to reach out to your elected officials and remind them of the important role they play in helping to remove the barriers to the adequate assessment and treatment of pain.

7. Give copies of the proclamation to non-profit health organizations, support groups, etc. so, they, in turn, can promote awareness month and their services to persons in pain as well.

GOOD LUCK! Together, we can make a difference!

- - - - - -
CA Sample Letter
- - - - - -

June 1, 2010

Dear Governor,

On behalf of the American Pain Foundation, Intractable Pain Patients United, For Grace, ThePainStore.com, as well as pain patients throughout the state of California, I am writing to you today to ask for your support in declaring September 2010, once again, as Pain Awareness Month in California.

Pain is a national healthcare crisis--affecting tens of millions of Americans. It is the number one reason people seek medical care. Women and minorities suffer disproportionately. Undertreated pain has serious physiological, psychological, and social consequences. Pain weakens the immune system and slows recovery from disease or injury. Uncontrolled pain diminishes quality of life.

Pain costs our economy $100 billion in medical costs and lost workdays. Undertreated pain drives up the cost of healthcare, because it extends lengths of stay in hospitals, increases emergency room visits, and leads to unplanned clinic visits.

When pain is treated properly, many people can resume their lives. Treatments are available today to manage or greatly ease most pain, so people with pain should not suffer needlessly. People often mistakenly believe that pain is something they “just have to live with.” They are often made to feel that the pain is “just in their heads.”

Unfortunately, many barriers prevent effective pain treatment. Limited access to health care systems, prescribed pain treatments, or sites of care is seriously impeding pain sufferers’ ability to get their pain appropriately assessed and treated. Furthermore, a dearth of trained pain specialists, overly restrictive regulatory policies, and the public’s negative stereotypes about pain are standing in the way of ensuring appropriate and effective pain care for all. THIS HAS GOT TO STOP. Now is the time to ensure appropriate pain treatment for patients everywhere!

Congress declared the 10-year period that began January 1, 2001, as the Decade of Pain Control and Research. While progress has been made, much is left to do. We hope that we can count on your support to let your constituents know that having their pain taken seriously is a concern we jointly share.

We hope you will find the enclosed draft language helpful in crafting a proclamation declaring September 2010 as Pain Awareness Month in California. Thank you for your attention to this very important issue. Please don’t hesitate to contact me, should you have any questions.

Sincerely,
Heather Grace
Member, IPPU
Founder, ThePainStore.com

- - - - -
Draft - September 2010: Pain Awareness Month
- - - - -

WHEREAS, physical pain affects tens of millions of Americans and untreated or inadequately treated pain can harm quality of life by diminishing the ability to function, socialize and be productive; and

WHEREAS, despite this prevalence, access to appropriate and effective pain care remains a barrier for many Americans due to limited access to health care systems, appropriately trained pain specialists, prescribed pain treatments, or sites of care or pharmacies, as well as, negative stereotypes about pain, and

WHEREAS, pain takes an economic toll on our country, costing billions of dollars each year in medical expenses, lost wages, reduced productivity, and other costs; and

WHEREAS, improved pain management education and an effective multi-disciplinary treatment approach can help reduce suffering and remove barriers to pain-free living; and

WHEREAS, the American Pain Foundation, Intractable Pain Patients United, For Grace, ThePainStore.com, and a variety of other professional and consumer organizations exist to advocate for people experiencing pain by increasing awareness and promoting access to appropriate pain treatment for all Californians,

NOW THEREFORE, I, Arnold Schwarzenegger, GOVERNOR OF THE STATE OF California, do hereby proclaim September 2010 as:

PAIN AWARENESS MONTH

IN TESTIMONY WHEREOF, I have hereunto set my hand and caused to be affixed the Great Seal of the State of California, in the City of Sacramento, this 1st day of September, 2010.

*** Signature of the Governor and Seal HERE ****

Now Is the Time to Get Involved! September 2010 is Pain Awareness Month

2010-07-09T20:16:00.000-07:00

by Heather Grace

Are you experiencing chronic severe pain? Are you one of those suffering with an 'invisible illness' in silence? Are you a pain patient who feels alone, undertreated by doctors, ashamed to admit you have to take pain medication to survive? Pain can be an overwhelming condition--let's working together to conquer it... one patient at a time!

Now is the time -- September 2010

Outreach and advocacy activities are set to take place coast to coast. People will focus on raising awareness about the undertreatment of pain, advocating for change in governmental policies, and distributing educational resources to everyone who needs them: people with pain, their caregivers and health care practitioners.

2010 marked an enormous victory for pain management. Provisions in the National Pain Care Policy Act passed with the Health Care Reform bill after 7 years in the making! We’ve garnered awareness and momentum around pain and the challenges it creates for millions of people, but there is still so much work to do. Most pain sufferers still do not receive the level of care they both need and deserve. Join the fight and make the difference!

What will you do to make a difference in the treatment of pain this September? Last year's events were very successful. Here are some of the highlights:

Twenty-two “September is Pain Awareness Month” proclamations were declared by Governors and Mayors through the efforts of organizations working for better pain management practices.

Over 300 activities and events took place across the country with an thousands in attendance.

I am certain this year, September 2010's Pain Awareness Month will have an even greater impact. Here are some of the projects in development:

There are TWO events set up on FaceBook:

Women in Pain Awareness/Recognition - Over 100 People Attending/Maybe Attending

Women in Pain Awareness - Over 100 People Attending/Maybe Attending

Join the American Pain Foundation's Virtual March:
The VIRTUAL MARCH is an online event to unite, empower and rally! Whether you are in pain or you care about someone living in pain, help make a difference in policy and practice. Join the march! Help transform pain policy into improved pain management for all!

There are many LIVE events being set-up nationwide, including:

AZ:

Arizona Diamondbacks Helping Power of Pain Foundation Strike Out Chronic Pain - Sept 26. Fundraising Ticket/T-Shirt Sales by POP at Chase Field. The AZ Diamondbacks take on the LA Dodgers in the last home game of the season.

CA:

For Grace's 3rd Annual Women in Pain Conference: Gender Matters - Sept 17. Register now! Women in pain, their caregivers and healthcare providers will gather in Los Angeles to educate, support and empower women to take responsibility for their own health and wellness.

Intractable Pain Patients United (IPPU) Pain Art Walk - Sept 25. Los Angeles/Orange County area artists will display their art, discussing their pain conditions, creating education/awareness.

More information to come, soon! PLEASE -- send us information on your event and we will post it here! September 2010 is Pain Awareness Month -- It's OUR Month!

:) Thanks everyone!
Heather @ ThePainStore.com

Watch the Stossel Show Episode RE: Pain on Hulu -- Now!

2010-05-09T21:44:00.000-07:00

by Heather Grace

John Stossel spoke out on behalf of pain patients everywhere, appearing on the O'Reilly Factor on February 23. Soon after, he took the topic on step further, discussing it on his show on the Fox Business Channel, "Stossel."

On February 23, Bill O'Reilly spoke with John Stossel (briefly) about pain, doctors leaving the pain management field, patients not getting adequate care, etc. It was sort of a promo for the full show on the subject, Stossel Show, which aired February 25 on Fox Business. Get the scoop at: http://www.creators.com/opinion/john-stossel/whose-body-is-it-2010-02-24.html.

It was a proud day--to see a member of the popular media coming to our defense. In the beginning of the segment on pain, Stossel remarked that he realizes many people fear death... that is their greatest fear. But, for him, being in severe pain the rest of his life is his greatest fear.

As someone who has dealt with pain himself, Stossel knows all too well how serious an issue pain can be! Not only does he champion the plight of the pain patient, he recognizes the fear and trepidation created by the DEA for even the most dedicated, well-meaning GOOD pain doctor.

His show delves deep into what the FDA does to patients, preventing them from getting the most effective care. He also discusses how the DEA has not just prosecuted doctors, causing good ones to use their life-savings defending themselves... but worse, how the DEA has also gone after patients! One patient discusses how he was personally jailed, because of the quantity of prescribed medication he had, for his own use. It's outrageous--a show that ALL PAIN SUFFERERS MUST SEE!

Here's the link to Hulu... watch it now! Stossel asks: Who owns your body and why should the FDA control what you put in your body? The entire episode is great. However, if you want to just see the segment on pain, it's at 25:57. Check it out:
http://www.hulu.com/watch/135096/stossel-thu-feb-25-2010#s-p4-so-i0

But, don't just watch it! Let John Stossel know how much you appreciate what he did for all of us, as pain patients! Visit his web site: http://www.foxbusiness.com/on-air/stossel Or, email him: stossel@foxbusiness.com.

Why? He is supporting our cause! It's a REALLY big deal that he recognizes how doctors are afraid to help pain patients. John Stossel is one of the few people IN THE MEDIA WHO IS IN OUR CORNER, so show your appreciation!

Thanks all --- keep fighting the good fight and stay well!
Love, Heather :)

Opioid Pain Relievers & Overdose - The Real Danger is Undertreated Pain

2010-03-10T23:18:00.000-08:00

by Heather Grace

*** A New CALL TO ACTION - Read Chronic Noncancer Pain Management and Opioid Overdose: Time to Change Prescribing Practices & Share Your Feedback ***

Attn All Pain Sufferers/Friends/Caregivers:

******************************************************************
THIS IS A CALL TO ACTION, REQUESTING YOU:
1. Read the article: http://www.annals.org/content/152/2/123.full.
2. Share YOUR response on their site.
3. Share YOUR response with the main author, the Deputy Director of the Office of National Drug Control Policy (the #2 Drug Czar under Pres. Obama).
4. Share This With EVERYONE Who Understands Our Plight!
******************************************************************

In short, Dr. A. Thomas McLellan and his co-author, have attacked the necessity of high-dose opioids in pain treatment. Sadly, this could have a huge impact on the future of everyone's access to medication. Important medication that is life-changing/life-saving!

Here is my letter to the author. Please, take the time to share your thoughts as well!

- - - - -

Comments on Opioid Pain Relievers & Overdose Potential - The Real Danger is Untreated/Undertreated Pain

by, Heather O. Grace

I am writing in response to Dr. A. Thomas McLellan's editorial online at: www.annals.org/content/152/2/123.full.

I hate having intractable pain, degenerative disc disease and neurological conditions that can prevent me from completing the simplest tasks. However, I can say with confidence that I am in no danger of overdose!

No true pain patient is at risk of overdose when managed via regular visits to a competent doctor. Under 2% of people taking opioids ever overdose. In fact, the study Dr. McLellan references had even lower rates of overdose.

It took me over five years of severe pain to find a doctor who would do anything and everything to help me. Unfortunately, I was at the end of my rope, suicidal, by that point.

That doctor saved my life. Our system is broken--not serving severe chronic pain patients like me. If Dr. McLellan is truly concerned about pain patients dying, then I ask:

What about the deaths of patients who don't get pain relief because the DEA restrictions have created a climate of fear among doctors? If you consider the deaths due to heart attack or stroke, in addition to those via suicide, the loss of life is far greater than the loss due to overdose.

Access to medication is a constant concern (fear, really) for pain patients. Patients often have a medication that works, then it is suddenly no longer available. The DEA limits access to many opioids. Worse still, the DEA also routinely accesses confidential prescription records of individual patients--without warrants--in order to target doctors treating high-dose opioid patients.

John Stossel, the famed journalist who was also treated for a serious pain condition, spoke on The O'Reilly Factor on Feb 23, and on his own show, Stossel, on Feb 25, 2010.

He said: "The Drug Enforcement Agency's war on drug dealers has led them to watch pain-management doctors like hawks. Drugs like Vicodin and OxyContin provide wonderful pain relief. But because they are also taken by 'recreational' drug users, doctors go to jail for prescribing quantities that the DEA considers 'inappropriate.' As a result, pain specialists are scared into underprescribing painkillers. Sick people suffer horrible pain needlessly." Source: www.creators.com/opinion/john-stossel/whose-body-is-it-2010-02-24.htmlhttp://www.blogger.com/img/blank.gif

"The system is broken, and patients are suffering," said Claudia Schlosberg, from the American Society of Consultant Pharmacists. "Law enforcement concern has to be compatible with meeting patients' needs. Right now it's not." Source: www.painreliefnetwork.org/page/2/

And there are serious health implications: Dr. Forest Tennant, a founder of the American Society of Addiction Medicine has identified Cardiac Adrenal Pain Syndrome: "Severe pain is well-known to stimulate the cardiac and adrenal systems...The tachycardia and hypertension is caused by pain's over-stimulation of the nervous system. It's the root cause of cardiac and adrenal complications." Source: www.healthcentral.com/chronic-pain/c/3388/69308/information

Treating severe pain patients is not the mystery many people might think it is. Doctors can use objective scales to diagnose patients: blood pressure/pulse, visible inspection, MRIs/CAT scans and bloodwork.

If Dr. McLellan wants to truly help prevent deaths of pain patients, then there are 3 things I recommend the current administration focus its' efforts on:

1. Revise DEA mandate that creates prescription fears even for doctors who treat legitimate pain patients. Don't restrict access to any of the FDA-approved opioids.

2. Ensure pain treaters have access to appropriate documentation on HOW to objectively diagnose pain patients, such as the article written by Dr. Forest Tennant, who has treated pain patients for 25 years. Source: www.pain-topics.org/pdf/Tennant-PainSigns.pdf

3. Create a nationwide Pain Patient's Bill of Rights, similar to the one in California. Include the CA patient rights, plus the objective diagnostic criteria, as noted in #2, above.

By doing all three, a more comprehensive system of care will be in place, throughout the country. People are beginning to open their eyes to the truth about opioids. The Stossel Show is a wonderful step in the right direction. You, Dr. McLellan, as the Deputy Director of the Office of National Drug Control Policy, can be on the forefront of meaningful differences in the quality of care. Plus, with education comes less severe uncontrolled pain and, most certainly, less needless deaths.

I realize it is hard to understand our plight as someone on the outside of all this suffering. I didn't understand use of morphine or methadone until I was suffering and near my own demise. I urge you, Dr McLellan, to look at things from a fresh perspective, talking to pain patients and their doctors, to see what it is to live with pain. We take our opioids just as diabetics take insulin. There really is no difference.

Please, Dr. McLellan, as the #2 Drug Czar working under Director, R. Gil Kerlikowske, you have the power to make positive changes to the way pain patients are treated. I urge you to take a stand in the right direction--to help pain patients--we are counting on you!

A CALL TO ACTION - JOHN STOSSEL SPEAKS OUT ON BEHALF OF PAIN PATIENTS WORLDWIDE

2010-02-23T19:38:00.000-08:00

*** A CALL TO ACTION - WATCH JOHN STOSSEL FEB 23 @ 8PM & FEB 25 @ 8PM + EMAIL REQUEST ***

Attn All Pain Sufferers/Friends/Caregivers:

******************************************************************
THIS IS A CALL TO ACTION, REQUESTING YOU
1. Watch the O'Reilly Factor from Feb 23 at 8pm.
2. Watch Stossel's Show on Fox Business from Feb 25 at 8pm.
3. Email Bill O'Reilly AND John Stossel using the info below ASAP.
4. Share This Blog With EVERYONE Who Understands Our Plight!
******************************************************************

On February 23, on the O'Reilly Factor on Fox News at 8pm EST and PST, Bill O'Reilly spoke with John Stossel (briefly) about pain, doctors leaving the pain management field, patients not getting adequate care, etc. It was sort of a promo for the full show on the subject, Stossel Show, which aired February 25 on Fox Business. Get the scoop at: http://www.creators.com/opinion/john-stossel/whose-body-is-it-2010-02-24.html.

IT IS VITALLY IMPORTANT TO SUPPORT PROGRAMMING THAT BENEFITS PAIN PATIENTS EVERYWHERE! Please let BOTH O'Reilly and Stossel know that you appreciate their coverage of this IMPORTANT topic!

Get more info via The O'Reilly Factor web site at: http://www.foxnews.com/oreilly. Email him RE the Stossel episode Feb 23 on pain, SHOW YOUR SUPPORT. His email is: oreilly@foxnews.com. Also, you can call "The Radio Factor" live on the air at 1-877-9-NO-SPIN (877-966-7746) weekdays from noon to 2 p.m. ET.

See John Stossel's show web site at: http://www.foxbusiness.com/on-air/stossel-- He is supporting our cause. It's a REALLY big deal that he recognizes how doctors are afraid to help pain patients. John Stossel is one of the few people IN THE MEDIA WHO IS IN OUR CORNER, so show you're appreciation. Let's talk to him too! Email him at stossel@foxbusiness.com.

*** Below are sample emails you can use to send to both O'Reilly and Stossel. Feel free to send as is, with your name and info, or edit and send what you want to say, personally. But, the more mail they get, the better!!! ***

Thanks all --- keep fighting the good fight and stay well!
Love, Heather :)

------------ --------- ---------
LETTER SAMPLES ARE BELOW
------------ --------- ---------

Dear Mr. Bill O'Reilly,

I was pleased to see the show with John Stossel discussing pain and the problems facing not only doctors, but pain patients in our health care system. I have Intractable Pain--a severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated. It causes adverse biologic affects on the body's cardiovascular, hormone, and neurologic systems.

I would urge you, Mr. O'Reilly, as well as John Stossel, to pursue the issue of pain as a distinct, life-threatening illness. I agree with you wholeheartedly that the President's healthcare plan WILL NOT work. The plan is especially dangerous for people with severe illness, such as myself and many, many friends who suffer with nonstop (all day, every day) pain. Our voices are not heard often enough.

WE NEED YOUR HELP -- PLEASE DISCUSS ISSUES OF PAIN MANAGEMENT AND HAVE PAIN PATIENTS REPRESENTED ON YOUR SHOW. We would all be very thankful! This is a growing problem worldwide that cannot be resolved until doctors are able to treat their pain patients without fear of prescribing the necessary medication.

All of our lives are in jeopardy and we appreciate your show shining a light on the subject.

Most Sincerely,
YOUR NAME HERE
Pain Sufferer

Please visit these sites for reliable information on intractable pain:
American Pain Foundation: www.painfoundation.org
Intractable Pain Authority-Dr. Forest Tennant: www.foresttennant.com
Intractable Pain Disease Site: www.intractablepaindisease.com

- - - - - - - - - -

Dear Mr. John Stossel,

I was pleased to see you on the O'Reilly Factor discussing pain and the problems facing not only doctors, but pain patients in our health care system. I have Intractable Pain--a severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated. It causes adverse biologic affects on the body's cardiovascular, hormone, and neurologic systems.

I would urge you, Mr. Stossel, as well as Mr. O'Reilly, to pursue the issue of pain as a distinct, life-threatening illness. I agree with you wholeheartedly that the President's healthcare plan WILL NOT work. The plan is especially dangerous for people with severe illness, such as myself and many, many friends who suffer with nonstop (all day, every day) pain. Our voices are not heard often enough.

WE NEED YOUR HELP -- PLEASE DISCUSS ISSUES OF PAIN MANAGEMENT AND HAVE PAIN PATIENTS REPRESENTED ON YOUR SHOW. We would all be very thankful! This is a growing problem worldwide that cannot be resolved until doctors are able to treat their pain patients without fear of prescribing the necessary medication. All of our lives are in jeopardy and we appreciate you shining a light on the subject.

Most Sincerely,
YOUR NAME HERE
Pain Sufferer

Please visit these sites for reliable information on intractable pain:
American Pain Foundation: www.painfoundation.org
Intractable Pain Authority-Dr. Forest Tennant: www.foresttennant.com
Intractable Pain Disease Site: www.intractablepaindisease.com

Have YOUR letter to share? Include it below! Have a link to the videos? We'd love to see them too. :)

Pain Medication Accessibility for the Underinsured

2010-02-19T15:31:00.000-08:00

by Heather Grace

Many people with chronic or intractable pain have a very hard time getting the medications they need for their very survival. It's a huge issue and though the government is trying to help the uninsured/underinsured, chances are, the very ill will not be helped by such a plan.

Why? As most pain patients know, it's already happening under all current insurance plans. And, it happens frequently. Anyone who depends on large quantities of medication that are often quite costly is likely to have issues with ANY insurance plan.

Insurers will delay or worse, deny coverage altogether. Many question the need for such medications, and it becomes a huge war between the insurer and the insured, with the doctors in the middle, trying desperately to ensure their patients survive.

With all of this going on, ThePainStore.com is trying to do its part to help those in need. If you are currently having problems with your insurance company, or you don't have adequate coverage, there are several places you can look to for assistance.

Please see our web site for the full details on the many programs available: Pain Patients: Access to Prescriptions.

There are plans offered by specific pharmaceutical companies, as well as prescription assistance organizations. Additionally, there are prescription savings cards offered by many groups.

Need to see someone right away? Visit the Free/Low-Cost Health Clinic Finder.

If you are in California and have a serious illness, but cannot seem to get insurance through normal channels, there is a plan that may help. Get the details on the California Major Risk Medical Insurance Program.

Also, we welcome you to share your experiences with us! Have experience with these plans? Tell us! Got recommendations for other plans we should add here? Please post them now! Have issues with getting the medication you need? Please share them with us -- right here on our blog. Thanks everyone!

Keep Your Job or Find A New One: Surviving Pain While You Work!

2009-12-17T23:45:00.000-08:00

by Heather Grace

Being in constant, severe pain while trying to keep a brave face is hard. Sometimes, it feels like "Mission Impossible." The difficulty is multiplied exponentially when you are expected to perform as you normally do, throughout your daily routine. The big question is: When your pain is at its worst and you are forced to work your regular 40+ hour work week, how do you cope?

My Story
Coping isn't easy, and unless you have resources to look to, such as web sites or other pain patients to speak to, you just sort of muddle through, on auto-pilot, trying to survive. I should know... I suffered in silence (well, mostly in silence), working in pain from late 1999 through July, 2004 when I was unceremoniously laid off.

Despite my excruciating headaches, the pain that raged from my spine through my neck, shoulders and arms, I did my best at work, as I always did. Because I was my usual loyal self, I didn't want to let anyone down. I didn't want to disappoint anyone or appear weak. I reasoned, to myself as well as to others, that sitting home wasn't going to change my condition any... that I might as well continue to be productive.

It's very hard to tell when you slip, a little more each day. When you are trying to keep it together, even if it gets harder and the pressure gets less and less tolerable, how do you know when to say 'when?' It's just not easy to know when to say it's just gotten to be too overwhelming.

And, part of the reason I stayed was purely out of fear. I didn't know how I was going to survive without a job. But, when it became obvious I was being looked at closely by my boss and others in upper management, I panicked. It wasn't my imagination. They knew I needed surgery and they treated me very badly. It was like I was continually being tested. They increased the pressure, I was accused of things I didn't do, then didn't even get an apology when the truth came out!

They all seemed to be waiting for me to fail... and eagerly so! And I continued giving blood, sweat and tears. I'm not sure why I didn't realize that my efforts were in vain. My physician urged me to take time off. I was so caught up in what would happen if I was let go, that I sobbed, in his office, "If I do that, they will FIRE me."

And of course, it turned out that they let me go, anyway. The day I was laid off seemed like the worst day of my life. What was I going to do? In this kind of pain, how would I survive? Pay my way? Because of the pain and the uncertainty that came with it, the last few years of my life have been a roller-coaster.

The pain was bad enough--not only was it constant, but it seemed to be getting worse. My emotions were all over the map, even before I was let go, but that increased when I realized everything I owned was probably going to have to be given up. It's amazing how attached I had become to having my own home, to having nice things. At the same time, I would've gladly given up everything if I could just be whole again. A big part of me wished, hoped, prayed...wanted an answer. A miracle. The 'cure.'

But, there wasn't one.

Finally, in early 2006, I found a doctor that helped me see my future. I had thought for so long that I didn't have one. 'Pain management' never sounded good to me, but that is what my life was destined to become.

Now, I focus on managing my pain. I spend each day trying to minimize activities that will hurt, and maximize time spent doing things that bring me any degree of happiness. Laughter is a serious gift. Even smiles are! Being able to go back to work has been hard, but I am thankful every day that I am able-bodied enough to do so.

Yes, it hurts. Yes, I have to take lots of medication, both prescription and over-the-counter. That includes amino acids, vitamins, supplements of all kinds -- most of which are carried on ThePainStore.com because they work!

In addition to taking more meds, I have to monitor my body and accept my limitations. But being productive; doing something other than sitting/laying around all day, letting my thoughts wander to the negative--that is a true gift. I have recently realized that working full-time is no longer an option, and it is something I have had to wrestle with for SEVERAL years in order to accept it. However, I am finding ways to keep active despite the challenges I face.

So, how can you make it work? There are many tools that you can use -- things that I have tried and have found helpful:

#1: Slow and Steady
Try to give yourself plenty of time to do things that make your daily routine easier. If you work outside the home, be sure to plan your day wisely. If you are less rushed, there is less reason to add stress to your day unnecessarily.

For me, I find it very important to get up, then give myself time to relax in my favorite chair and plan out my day. I also use that time to take care of the things that need to get done at home. As I sit there, I go over what I need to accomplish before that day, where I need to go, what I will wear, what I will take with me, etc. Once I have gotten things all planned out, I act.

Sometimes, when I am extra-stressed or maybe even over-tired, I spend that planning time in bed, making sure I press the 'snooze' button, as I lay there and plan, think, and maybe even drift back to sleep for a few more minutes. It's a relaxing way to start the day, and something I have come to rely on, in order to make it work.

#2. Pain Management
Managing the pain is my ever-present goal. For me, while I am planning out my day, I sometimes start to feel pain before it is time for my morning meds. So, I may find it necessary to take something for 'break-through pain' (BTP).

Often, it is one of my prescription meds, combined with two non-prescription meds: ibuprofen and Excedrin, as well as amino acids like Taurine and GABA. Combining the prescription medication with these over-the-counter items allow the medication to work better. (If you read the handbook on finding a good pain doctor, you can learn more about this option, called a "potentiator.")

Focusing on pain management throughout your day will help ensure a much easier experience at your job. It might take time to find the perfect regimen for you, but I promise, when you do, it will feel like a true miracle!

#3. Eating Right: Protein and Fiber are Required
Planning out proper meals is vitally important to anyone with chronic or intractable pain. In addition to a morning meal with lots of protein and a decent amount of fiber, you need to ensure high protein snacks are available, whether you are at home, on the job, or somewhere on-the-go.

I always make sure I take my morning meds, then ensure I have my lunch as well as several snacks with me if I will be away from hom. Each of my meals and snacks (as often as possible) has an excellent balance of protein and fiber, along with other ingredients.

Pain patients need lots of protein in order to reduce pain naturally. (Learn more about this in the handbook referenced above, as well as the Intractable Pain Patient's handbook.)

You will also find, that most opioid-based pain relievers have a constipating effect. If you don't eat lots of fiber, believe me, you'll regret it later. Fresh fruit and vegetables are very good for you, when possible. Try an apple or perhaps some broccoli dipped in low-fat ranch dressing. Also, an easier snack is dried fruit and nuts (aka trail mix) and/or, certain energy bars, when it comes to fiber AND protein. Check your labels!

In the summer months, I often try to start the day with a protein shake, complete with some nice frozen berries and other seasonal fruit (tasty and fiber-rich!). A cold smoothie-like shake, with soy or whey protein powder (my fave is vanilla whey protein by Body Fortress--1/2 scoop is 13 grams of protein), makes for an excellent breakfast drink! Use your choice of regular milk/soy milk, water, yogurt or any combo of those, to your desired smoothie consistency.

Want to have another smoothie later in the day? Try freezing them. Then, put one in the fridge in the AM to use around lunchtime. Or, try a frozen alternative! If you use lots yogurt in your smoothies, they are actually not too frozen to eat like a freezer-based treat. But unlike your typical frozen yogurt or sorbet, you have a dessert packed with protein and fiber! YYUUUUMMM!

#4: Coping with a Busy and/or Stressful Day - Your Arsenal of Options
Today's world is so busy, even for people in pain. The world doesn't stop turning when you are having a hard day!

On days when I am either too busy to take care of myself properly, or on days when I am rushing all over the place, doing lots of moving, it's important to have an arsenal of items to help reduce the incidence of pain.

In addition to ensuring you have your meds with you (I've forgotten them before and am forced to go back and get them, ugh!) at ALL TIMES, make sure your fave pain relief items are at your disposal. ThePainStore.com has lots of great topical pain relief options.

I have had wonderful success with pain sprays, which are now my absolute favorite choice. Not only does the smell dissipate quickly, there is less risk of any staining or mess to your clothing. Additionally, it's INSTANT relief to tense muscles. Yes! Try this: take your Biofreeze, StoPain Spray or My Omega and put a small amount in a travel-size spray bottle. Then pack it with your regular work stuff. It's EXCELLENT!

What else is good for the pain? I like Tiger Balm and most of the OTC pain patches, such as Salon Pas and Tiger Balm's patches. They are great when you have pain in a specific area... the patches/gels/sprays go to work and relieve pain over a period of time. Definitely makes the work day easier.

#5: Focus on Why It's a Good Day--Today!
What else can be done? A huge part of coping is also just letting go of the negativity around you. Don't get caught up in the way life used to be, or in focusing on the bad things that have happened. Let go of all of that, and focus on the good in your life: right now, today. Be positive and live in the now--it makes dealing with the rough days that much easier!

Believe me, I know how hard it can be... Yes, I used to have X, Y, or Z. But, I can say with conviction that I didn't appreciate those things as much as I should have. Now, I can appreciate the little things in life that I truly never even noticed before. The past should stay in the past, where it belongs, as much as possible.

I also control any unnecessary negativity, preventing it from invading my daily life. For instance, I don't keep up with the local or national news, because I know it will only try to zero in on some invented reality--a new pseudo-crisis that I don't want to know about. Gangs, drugs, illness, poverty... yes, I know they exist and I am sad that they do. But, the way the media can put this hyper-focus on the BAD things that are going on isn't good for anyone! I focus on what is going on in MY reality, MY life.

The hardship going on in other places, to other people, is really not a positive way to spend my time. Thinking of things like this that trigger negativity in you. Get rid of those things. You don't need them!

Maybe the nightly news or CNN.com are just too much for you these days. Skip them. You are in control of your world.

You decide what images come into you world and if you're like me, you choose to watch funny movies, inspiring true stories, creative unique independent films, etc. I am in control of my life in a way I never was before, and that is how I cope. I know what I need and what is best, and I try to live each day keeping my focus on the here and now--on MY here and now.

There's no reason you can't do that, too. You'll never realize how depressing the news is until you free yourself from it! It's truly liberating and makes coping with the realities of YOUR life that much easier. And, a lot can be said for comic relief. Yes, pain is a SERIOUS condition. But, watching a good comedy--one that makes you realllly laugh--goes a long way in keeping you thinking positively!

#6 Find Meaning, Because Work Doesn't Have to be a 4-Letter Word!
Let's face it, work can be a real pain in the rear! Not every day is going to be easy, or fun. Many times, you will wish you were anywhere but there. (Even before you had pain, chances are, you felt this way!)

So, what can you do to make your work day more enjoyable? Do something you enjoy doing! Work at a company you believe in, or work with people you like being around. It will do wonders for your pain if you can at least have some fun while you're at work. I have been trying my best to do something I believe in, with my whole heart and soul.

Launching ThePainStore.com has been very meaningful to me, because it allows me to help others manage their pain. I also spend time assisting my favorite doctor in his office, with patients, assisting in both front and back office procedures. I file, copy, make phone calls, gather charts, ensure we have copies of test results, put together special pain creams made to the doctor's specs... whatever is needed for the patients that day.

It makes me genuine happy to help people--especially new patients that were once like me. In pain, scared, not sure they could ever feel 'normal' again. Working in that office, knowing the good that is done there, it brings me incredible joy.

So, think long and hard and make it a goal to find the right place for you... What can you do, that has meaning for you?

And, I know what you might be thinking... Now is not exactly the best time to be changing jobs, so if you have something secure, why not find a way to look at it differently?

I once heard the story of a gentleman who worked in the Maintenance Department at NASA. He essentially swept floors--keeping the place spotless for 25 years. Whenever someone would ask him what he did, he would say proudly, "I help Astronauts in the Space Program." He could've just as easily said, "I am 'just' a Janitor," but because he had a healthy, positive perspective, what he did had meaning for him. Even if he never took flight himself, he was a proud member of the team that made it happen.

What can you do to put a healthy spin on your perspective?

#7 Volunteerism - Meaningful Work for Others Also Helps You
Many employers are working with charitable organizations these days. It not only boosts employee morale, but it provides a nice tax write-off for the organization as well.

Even if your company isn't doing so now, find ways to incorporate charity into what you already do. Is there extra of your product that could be donated? Is there a service you might be able to provide to charitable groups? Almost every company has old or outdated equipment, such as computers, fax machines, cell phones, etc, that may be donated to a charity instead of being disposed of. Anything that is still has a useful life can be transformed from 'waste' to a donation. By integrating volunteerism into a company, it can be beneficial on many levels, and most companies are grateful for the tax incentives!

Even if volunteerism through your employer isn't an option, it might be an option to consider in your off time. If you have the ability to help others, it brightens your day and somehow, you don't notice the pain as much.

For those who can no longer work, volunteerism can bolster your self-esteem while you help someone less fortunate. No matter your circumstance, there are always those who have things harder, who need help that you can offer.

Seek out people you can help, and get busy! :) Even if it's about sharing your support over the phone or Internet, you CAN and WILL make a difference, in a way that works for YOU!

#8 Just Getting Back to Work? Where To Begin...
Is there a specific 501c3 government-approved nonprofit group that you admire? Maybe they have a need for volunteer assistance, or even part-time help that pays you a little something.

If you've been in so much pain thus far that you haven't been able to work, consider starting back at a nonprofit. There are lots of nonprofit jobs out there, just 'Google' it, and find one that suits you. It's a good place to start if you're not sure what you want to do.

If you are doing something you are proud of, it makes you feel good, while helping others. And, the best part is the positive feeling you get--even in spite of whatever else you may be dealing with. I have always found things easier to do if they have meaning for me. As they say, "Do what you love and you will never 'work' a day in your life."

I now live it, so I know it is true. I don't think of it as a job, but as an opportunity--to help others while I continue to reinforce what works for me. Not every day is easy, but the positive aspects definitely outweigh the pain.

And, since I would be in pain no matter what I do, I might as well do something that makes me feel good in other ways, right?

Give it a try, and you'll feel it too.

#9 Share Your Story - Make Others Understand
There is nothing worse in life than feeling alone and misunderstood. In order to have a decent experience at work, share your story with the people you know well and trust on the job.

Let them know what you are going through, the emotions involved, why it is so hard. Tell them how it is different than a regular old 'boo-boo' -- print out information on your diagnosis from a trusted resource, if need be.

Not only will they be understanding, they can offer you support and maybe even some advice. They will also feel better about stepping in if you have to take a day off, or are having a tough day and need a break. Keeping it all inside may seem like the best thing to do, especially in jobs where gossip is rampant, but if you have people on your side, that kind of thing won't matter so much, will it?

And, as hard as it may be, it's definitely a good idea to work with your doctor on what to tell HR. I would recommend having your physician explain your condition in writing. Then, meet with the people you need to at work, clarifying with HR/your boss how your condition impacts you, that it is a disability, etc. That way it is on record, in case you need time off or certain accommodations. All of this helps protect you, under the law.

Had I not been so afraid to tell someone in HR about what was going on, perhaps I wouldn't have dealt with so much obvious discrimination by upper management at my job. As illegal as it is, believe me, it happens more often than you would think. Protect yourself!

#10 Never Give Up!
I cannot stress this enough... Never give up. I think that's the most important thing I can tell anyone who is dealing with pain and having a very hard time with it. You may not have very decent pain management yet. You may be going through periods of anxiety, pain, anger, depression...the feeling of hopelessness that tends to coincide with your life being turned upside down.

But I promise you, inner strength is what will get you through this. Find that inner strength, that resolve, the tenacity that's helped you deal with your pain thus far. Read everything you can get your hands on, find out what works for others. Use your common sense along with good old-fashioned 'trial and error' to come up with the best possible protocol for you. Working with a good doctor, of course, will make this easier.

New options are coming available all the time. There are pharmaceuticals in development, centuries old options that are being studied/used/understood, items being imported from other countries and utilized, and even new tests to understand the genetics behind severe pain and thus, in time, what can be done about it.

I found my miracle -- pain management. And, now I am back to work. No, it's not a regular 40-hour a week 'day job' but I am doing something positive, for myself. And, I have lots of ideas and plans for the future. I am not allowing my disease to take over... I struggle with it, but I am confident I can muddle through. Surviving 10+ years with pain has made me stronger than I ever thought possible!

I never thought I'd be so happy about working, but believe me, I am thankful, every day. You can get there, too. :) Good luck!

The Benefits of Pain Sprays For Persistent Pain - Treating Pain On-The-Go

2009-08-02T17:02:00.000-07:00

by Heather Grace

As a long-time pain sufferer, any product that seems too good to be true leaves me skeptical... as it should. I have dealt with severe, chronic pain for over 10 years and was diagnosed two years ago with Intractable Pain (IP). For those of you who don't know what that means, I am in pain nearly all day, every day. I have neurological problems, headaches, and suffer a host of side effects that are not at all pleasant. (You can read more about IP here.)

I have tried everything. Physical therapy, biofeedback, EMS/TENS, ultrasound, massage, chiropractic care, spinal injections/nerve blocks, accupuncture/accupressure, prescription medication and yes, even surgery. I have also fallen pray to the promises of many over-the-counter products that promise pain relief:

A whole host of vitamins, supplements and nonprescription medication. Patches that either fall off mid-use OR stick too well thus hurting and/or leaving areas of redness/broken skin when you attempt to take them off. Hot packs, cold packs--combination hot/cold packs...packs that you can attach to here or there on your body. Then there's the creams: smelly creams, greasy creams, creams that stain, some that do all of the above! Ugh.

When you don't know what you're looking for, not only do you spend a lot of money needlessly; you end up becoming a guinea pig, desperately searching for adequate pain management. Sure, some things work a little, help a little, make life a little easier. But most are a huge waste of money!

Then, two years ago I found the answer... a pain clinic with a caring doctor that knows what works and what doesn't. Imagine that! Thanks to him, I have narrowed my search, using the nonprescription items that he has tested with his own patient population, to ensure effectiveness.

He even put out a wonderful handbook earlier this year, called "What To Do While Looking For A GOOD Pain Doctor." Get your FREE copy here.

Since then, I have found what works for me, and have had enough pain relief to go from sitting around/laying around, in such ercruitiating pain that I couldn't do much else -- to launching THIS VERY SITE in order to help others. It may not seem like much to you, but for me, it's been THE miracle of all miracles!

Then, this past Christmas, I received a present from Dr. T--a pain spray. Sure, I was skeptical. But, after a few sprays, the headache I had melted away--I was SMILING. It was magical. RELIEF! Instantly! Like nothing I had ever tried. Sure, other things had worked for me. But not so quickly. Not like this!

So, here in this blog, I will detail the three pain sprays I believe in most. I will tell you what makes each one special, which one I like most and why, and give you the links to purchase them, should you wish to try them for yourself. If not, please try to find them locally--it's worth the effort, because they are WONDERFUL!

ThePainStore.com's OFFICIAL REVIEWS:
The Absolute BEST Topical Pain Sprays

My #2 Choice of 4 oz Pain Relievers: Biofreeze

Having never tried a pain spray before, Biofreeze amazed me. I had a horrific headache, getting caught in traffic on the way to my doctor's office. He presented the bottle of Biofreeze to me as a Christmas present! It was by far the best present I got for Christmas 2008! My headache lessened, I instantly felt better. For a chronic pain sufferer, that's pretty powerful!

Biofreeze is very popular, and because of it's use mainly in clinics, it's harder to get, and as such, is also one of the more expensive sprays. Is it worth the price? Absolutely! Are the other options? Sure, we carry two. Biofreeze is unique in that it contains Ilex and several herbal extracts not used in other products. I love it! Sprays at any angle and the relief lasts for up to two hours. It's wonderful!

Gets 4.5 out of 5 stars, and is ThePainStore.com's #2 choice for 4 oz pain sprays. It would be PERFECTION if only it was easier to get, and was slightly less expensive!

My #1 Choice of 4 oz Pain Sprays: StoPain

StoPain is our top pick for 4 oz pain sprays! It's effective for instant relief of headaches with no medication needed, which is a true miracle for me! I cannot imagine life without pain sprays anymore.

Compares to Biofreeze and I would say it's hard to distinguish between the two. Contains 8% menthol compared to Biofreeze's 10%. Definitely less expensive! Sprays at any angle and the relief lasts for up to two hours. It's wonderful!

Because of it's price and the fact that it's much easier to use, StoPain is ThePainStore.com's official choice for #1 Pain Spray, 4 oz Size.

Note that right now it's even less expensive: StoPain has graciously provided ThePainStore.com with a limited supply of $2 rebate forms. With purchase, you will receive this rebate, and get an even better deal on your first purchase of StoPain, thru Dec 31, 2009! (Limit one rebate per person or address.)

DRUMROLL PLEASE...
My #1 Choice of ALL Pain Sprays: MyOmega

MyOmega gets voted #1 because it provides instant pain relief, but more than that, the relief lasts! MyOmega has time-released Ice Pearls that keep the menthol penetrating into your muscles, continuing your pain management for longer than any other pain spray I've used.

The first pain spray I ever tried was Biofreeze, which was exceptional, however, I have been swayed by MyOmega. Not only do you get TWICE the amount (8 oz instead of Biofreeze's 4) for just a few dollars more, but you get more menthol and a more lasting relief!

It's not just our #1 Best Pain Spray, it is by far our bestseller... our #1 Topical.

So, get our most highly recommended pain relief spray today--you won't be disappointed! Treats muscle pain, headaches, even sprains or strains, and inflammation too! You will be pleasantly surprised by this product. It's true targeted pain relief in a spray. More than that, it's a 5-star product! You will feel better in seconds. It's a miracle in a can -- I keep pain spray with me wherever I go!

The Best Topicals on ThePainStore.com -- Targeted Pain Relief Sprays:

MyOmega - #1 Pain Spray

StoPain - #1 Pain Spray, 4 oz Size

Biofreezze - #2 Pain Spray, 4 oz Size

The FDA is Trying to Regulate Opioids - Why We Must Fight It!

2009-06-13T17:20:00.000-07:00

by Heather Grace

Here's my letter to the FDA regarding their new attempt to control opioids, with their 'Risk Evaluation and Mitigation Strategies.' Visit the site and make your own comments NOW: http://www.regulations.gov/fdmspublic/component/main?main=DocketDetail&d=FDA-2009-N-0143. Deadline: June 30, 2009.

RE Docket No. FDA-2009-N-0143:

While I choose to have some faith in the FDA, and believe that they are attempting to help people by setting up these REMS, the idea is ill-conceived. To develop Risk Evaluation and Mitigation Strategies for certain opioid drugs assumes that the FDA has better knowledge about the patient than their treating physician does. I am sure when the people who drafted the REMS got together, it sounded like a good idea, but really, it is not that simple.

It is more than impractical--it is impossible to have the government control the dispensing of certain medications, and then truly make those medications available freely to those who need them.

Anyone who knows even a little about pain management understands how complex it is. Any pain patient, any good pain management physician will state unequivocally, there is no recipe for success in treating pain. There is no black and white diagnostic standard.

While some people suffer one short bout of chronic pain, lasting little over 90 days and then they get better, there are also many serious pain sufferers, with very serious diagnoses.

A doctor may have certain preferences about what he tries with a patient, and what she/he feels works well. After the first line treatment, she/he may try other options, other combinations, until a patient is stabilized and the pain is being effectively managed. As we all know, the ultimate goal is to get the patient back to some semblance of a normal life, where daily activities are possible, without excruciating pain limiting one to a bed-bound or couch-bound state.

Physicians are often limited by what a patient’s prescription plan will cover, so that, too, impacts what is prescribed. However, sometimes patients are faced with the issue of either getting proper pain management and going broke, paying out of pocket for things that aren’t covered, or accepting a lesser medication, that involves lesser pain relief.

There are already so many stumbling blocks for patients trying to find relief. I would hate to see the government further regulate the process, thus making it more difficult for people who are plagued by pain, and already have a very hard life.

There is a huge distinction between simple chronic pain and a diagnosis of Intractable Pain. Do you realize what Intractable Pain really means? Someone on the outside really doesn’t know what it looks like, or how it feels. It’s really impossible to understand the agony. If you have never experienced any sort of serious injury, count yourself lucky. Intractable Pain literally means pain that never goes away. Daily pain. Hourly pain. Minute-by-minute clock-watching, excruciating ‘will it ever end, dear God, please’ pain.

The official definition, according to IntractablePainDisease.com: "A severe, constant pain that is not curable by any known means and which causes a bed or house-bound state... Intractable Pain (IP) has four outstanding characteristics: (1) constant, (2) severe, (3) disabling, and (4) causes detectable biologic impacts on the body's blood pressure, pulse rate, hormone levels, and neurologic systems. It should be considered a serious catastrophic condition that, inadequately treated, leads to premature death. Some of its complications include dementia, osteoporosis, muscle wasting, obesity, and cardiovascular disease."

For people who live it, trust me, life is already plenty difficult. To make it any harder, would truly be an injustice. REMS would endanger the lives of anyone with IP or a similar diagnosis.

I urge the FDA to first, get a better understanding of what Intractable Pain and its related diagnoses, means to the people dealing with it. Meet with an expert, someone like Forest Tennant, M.D., Dr.PH, who can accurately lead you through IP and its challenges. I am confident that patients with severe chronic pain/IP are in good hands with physicians like Dr. Tennant. Why?

A physician with effective knowledge of pain management has many tools available, regarding assessment of one’s pain management. She/he can assess the patient’s overall affect, as well as their ability to function as they did prior to injury. The doctor may use simple in-office tests, such as blood pressure and pulse rates, their gait and speech, to gauge a patient’s current pain level. She/he may also rely on blood tests that show how well a patient metabolizes medication, thus further justifying a patient’s need for high-dose opioid therapy.

Though some are new, there are many ways to understand why patients need the medications they need. There are clear-cut tests to show how effective their medications are. Therefore, I do not see a need for government intervention.

The REMS states that it intends to ensure that the benefits of these drugs continue to outweigh certain risks. I believe there is a serious danger in trying to establish a need for medication within the concrete walls of an institution, instead of by the warm hands of the treating physician, where there is the full gambit of a patient’s history: their MRIs, CT scans, X-rays, blood work, physical examination, blood pressure and pulse rates.

Death by overdose is a rare occurrence. It is not something that happens frequently when a patient is being accurately monitored and treated by a responsible physician who truly knows their history, knows their pain, and understands the patient's prescribing needs. Only a knowledgeable pain doctor can truly mitigate the risks of these drugs, on a case-by-case basis.

To quote Dr. Forest Tennant, M.D., Dr.PH. in The Intractable Pain Patient's Handbook for Survival: “The biggest problem an Intractable Pain (IP) patient faces for survival is that a bona fide IP patient is a rarity among chronic pain patients... Control of IP requires the daily use of prescription medication. I estimate that one IP case occurs among about every thousand chronic pain patients. Due to IP's rarity, almost every doctor, insurance plan, hospital, or family member you encounter will initially assume you are just another, average, chronic pain patient who can get by with the standard firstline treatments such as exercise, positive mental attitude, acupuncture, massage, and non-prescription drugs. To survive, you will constantly have to fight this misconception, and you must educate most of the people you encounter.

“IP patients all require a custom-made, one-of-a-kind treatment plan. Most physicians and other medical personnel you encounter may be bewildered and even fearful of your treatment, because they may not have encountered another patient with your pain severity.”

Dr. Tennant’s handbook further cautions those with IP to understand that pain is their enemy: “Your IP is long-standing, constant, keeps you from sleeping, drives up your pulse rate and blood pressure, and alters your adrenal hormone levels. You must remember that your pain is your enemy. To cause it to worsen or flare for any reason may do further damage to nerves and other body tissues that are already permanently damaged.

“Your attitude about pain must change. Increased pain hurts you. When the pain flares, your pulse rate increases, and hormones stored in your adrenal gland flood your system causing further body deterioration, rusting, and aging.

“Therefore, you MUST do whatever it takes to suppress your pain and prevent flare-ups. You simply want to keep pain as far away and as controlled as possible. Never try to ‘work through it’ or ‘tough it out’ or believe that character and will power will solve your problem.”

Dr. Tennant has extensively studied Cardiac Adrenal Pain Syndrome – a serious threat to IP patients. Pain control is vital to survival, and to have uncontrolled pain creates a serious risk of damage to the heart, and even death. DEATH.

REMS is a serious threat to pain patients. Such regulation, ironically, could lead to death, due to uncontrolled pain. If the goal is to reduce deaths, then why on earth would you keep treatment from those who genuinely need it, for their very survival?

I hope you will understand, based on the many concerned citizens who have reached out to you, that the REMS program is not going to work. It wasn’t well-conceived or thought through. It may work for certain patients, but it would prove a huge detriment to those who suffer with conditions like Intractable Pain. I wish there was an easy answer. Believe me, it would make so many lives easier. But, because there is not a quick fix, the FDA should not further involve themselves in the treatment of patients, because they simply have no business trying to ‘protect’ people when they don’t fully understand the treatment of pain.

Like many others, I have done what I can to help the pain community. I have worked with many pain patients as well as pain management doctors. I offer products to help make lives easier.

Like many of those utilizing my site, I suffer with Intractable Pain. Unless you know someone with IP, or you treat patients with IP, you cannot possibly understand the difficulty in treating these patients and finding a regimen that will work for them. We already live much shorter lives than the rest of the world. Why make the time we have here any harder?

Please stop trying to regulate pain medication. It’s simply too complex for a government agency to control without seriously harming its citizens.

Most Sincerely,
Heather Grace
ThePainStore.com
& Intractable Pain ‘Survivor’

Treating Numbness and Nerve Pain - What The Drug Companies Don't Want You to Know

2009-05-30T17:20:00.000-07:00

by Heather Grace

Living in Misery and Pain, Without Relief

When I was injured in 1999, no one could have told me to expect to be in a place of serious hopelessness, anger and fear about my future. I didn't know that I would be seriously contemplating whether it was realistic to expect any sort of recovery. I wasn't sure if I would work again, feel good again, have any sense of happiness. It was as if the dark clouds rolled in and surrounded me, and there was no sunshine breaking through those clouds.

I was in misery. A deep, dark miserable place. I even thought about suicide, because the pain was so intense, so overpowering. The doctors that treated me seemed to act like it was either my fault somehow, or I was faking. I felt like I might be losing my mind, in the middle of all I was going through.

Finally, after struggling along, searching for any possible chance of help, I found a pain doctor in January 2006 that would change my life forever. He was different than the other doctors I had seen. He appeared to be listening to my every word, asking careful questions then listening to the answers. He put it together... my symptoms actually made sense to him. I had a diagnosis: Intractable Pain. What is that? "A severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated. It causes adverse biologic affects on the body's cardiovascular, hormone and neurologic systems." (IntractablePainDisease.com)

The Wonders of GABA

Among other prescription treatments, my pain doctor introduced me to GABA, also called gamma aminobutyric acid. I had a lot of success with it. GABA was the first truly miraculous over-the-counter pain reliever I have ever tried. My doctor helped me to finally see that relief WAS possible, and that the answer to my suffering didn't necessarily come solely in a prescription bottle!

After several months of taking GABA, I told him it helped me a great deal, but that I still had some numbness at night, and it occasionally woke me from a sound sleep. This was nothing compared to the nightly battle I had to get comfortable previously, so even if that was something I had to live with, I was willing to accept it. Well, he had a wonderful surprise for me... He recommended Taurine. I had no idea what it was at first, but I soon read all I could about it.

My Taurine Miracle

Taurine is a conditionally essential amino acid which is found in most tissues of the body, especially throughout the nervous system. Taurine is well known for its role in the modulation of neurotransmitter activity and its relaxing effect on the mood. Taurine has been found to be important in cell membrane stabilization, as well as liver and eye health.

Taurine is important for those who are very physically active, in addition to its benefits for those who have experienced a serious injury, like me.

An A-list amino for anyone who exercises, Taurine performs many vital functions in the body, but its role in maintaining electrolyte balance makes it particularly important for athletes or anyone who participates regularly in strenous physical activity.

I am not big on understanding the chemical processes and how it all works, but BOY, does it WORK! Taurine apparently induces your body to build more GABA. That is, it is a building block of GABA. In the span of just about 45 days, I went from waking up maybe once a week due to numbness and/or what I call 'nerve pain' to sleeping soundly all night, every night.

It was awesome... and it seemed so simple. Things that naturally occur in our bodies get depleated, and in order to get back to the health we used to have, we supplement these with an inexpensive bottle of the very same thing!

Taurine has been the biggest and most surprising miracle in my pain treatment. I CANNOT EVEN BELIEVE IT MYSELF, but I swear to you, it's true!

Taurine has taken away my numbness, almost completely! It simply isn't part of my daily life. Now, I am sure, if I was to overwork my body, put myself in situations that are overwhelming and/or painful to someone in my weakened state, I would still experience pain and numbness from my serious neurological injury, but as of right now, there is no numbness to wake me up at night, to keep me from sleeping because it hurts so badly. If that's not a miracle, I don't know what is!

If you have chronic pain, intractable pain, RSD, Fibromyalgia, you name it, Taurine can help, more than you ever could possibly imagine! Especially if you experience numbness and nerve-related pain, Taurine is a valuable amino acid that can significantly reduce your pain.

In short, it's been a MIRACLE in a bottle! And if you ask me, Taurine is better than GABA and cheaper too!

Taurine, like GABA is unique, in that it tends to help calm your nerves in addition to bringing relief. I was very stressed by my pain and the fact that I had no diagnosis. After taking Taurine for some time, I felt like a different person. Less pain, numbness is 99% gone! Now I can sleep through 5 hours without waking up, which has been a huge change for me. I feel like myself again, and Taurine has been a big part of my pain relief!

Try it. If you're like me, I know you will have a powerful experience and relief like you've never known before! Taurine is a highly sought after, vital supplement -- so get some today!

Recommended directions from a renowned pain doctor, in his recent handbook (see below): Take 2 pills, 4 times daily. This recommendation is for uncontrolled pain. If pain is fairly well controlled, and other remedies are being taken, 1 pill, 4 times a day, is recommended.

* Source: 2009, "What To Do While Looking For A Good Pain Doctor"

Synthetic vs. The Real Thing

A pharmaceutical company, in its infinite wisdom, decided to release a synthetic version of GABA under the brand name, Lyrica. (The generic name is Pregabalin, or as I say "Pre-GABA-lin.") They market Lyrica as a medication for fibromyalgia. For a mere $800 per month, you can get the synthetic of GABA, with wooziness and a host of other potential side effects that are, as always, scary-sounding! Before I met my pain doctor, I was prescribed this medication, so I know how it stacks up against the REAL GABA and Taurine. There is simply NO comparison. The pharma industry would love to sweep these supplements under the rug and market costly synthetics to the public, but please, don't be fooled. Lots of times, you DON'T get what you pay for, and I can state with absolute 100% honesty, this is one of those cases.

Lyrica's site has a great interactive assessment tool, to discover whether you have nerve pain and would benefit from these amino acids. See it at http://www.lyrica.com/main_assess_my_pain.aspx. Below the assessment, you will also see several paragraphs of scary side effects that come with taking a prescription like Lyrica, instead of the real supplement. It makes you think, doesn't it? That's why I recommend Taurine very highly, as well as GABA, over any prescription synthetic.

The good news is, you don't have to take my word for it. Try Taurine for under $5 at ThePainStore.com. Seriously, what do you have to lose? Pain management and a serious reduction in numbness await you! My miracle can be your miracle too.

Welcome Pain Sufferers! Let's Blog Away...

2009-01-01T17:02:00.000-08:00

ThePainStore.com's Blog - For Pain Sufferers, By A Pain Sufferer!

by Heather Grace

I'm happy to welcome you to the very first blog, brought to you by ThePainStore.com! As someone who has been dealing with serious pain since late 1999, I know what you're going through. What's more, I want to help!

This site is open to everyone who has dealt with pain, or is currently suffering through it, trying to find the bright spots in some very difficult days. If you're dealing with pain, you know... finding something, ANYTHING that helps relieve the pain is vital!

Having been in pain since 1999, relief has been a crapshoot. I've dealt with 'the system' of doctors who are too busy to care, who are suspicious, who think there's no reason to still be in pain, who ignore the signs of suffering, including MRIs and X-Rays, and offer little more than aspirin to treat severe pain. It's truly exasperating!

And, over the years, I have tried a zillion different products. Most of them were garbage! But finally, in January 2007, I started working with an excellent pain doctor, someone who knows what he's doing. I got my diagnosis and from there, everything was very organized. We experimented with various options, both prescription and over-the-counter products. It's been over a year since I found a treatment plan that works for me!!! Yippee! (Read More on My Story)

I cannot tell you what it's like to have a serious reduction in my pain! The only word that comes to mind is "MIRACLE." Yes, I am still in pain. But, it's no longer pain that's a "10" on a 10-point scale.

I am able to think, to write, to smile. I have bad days as well as good, just like anyone else. But, when I am having a bad day, I have many options to reduce my pain -- options I never would've known about until recently!

Ever since I've experienced 'pain management,' I've been thinking: What can I do with this little piece of success in treating my pain? It seems so obvious! Share the answers with others.

It shouldn't be a mystery -- should it? While not all treatments work for every person who tries them, by providing access to all of the tools I've had access to, and giving the 'why' behind them, I think pain management is possible for everyone who visits this blog as well as ThePainStore.com. I truly do.

And, in addition to offering these products, I will be available to answer questions (as a layperson, of course!) who has been where you most likely are. If I can give any advice that applies to everyone dealing with pain, it's this: NEVER give up. You must be your own advocate and keep going, no matter what. Even if a treatment option seems outlandish, it can't hurt to try it. If you find something that works well, see what similar options may work even better. Can you take more of that particular product? Would adding another ingredient to augment that product possibly help it work better? This is called a 'potentiator,' by the way!

Because I suffered from late 1999 until early 2007 without a diagnosis, I was a basket case. No one else should have to suffer this fate. Having answers makes me want to help as many people as I can. So, that's why I'm here. Together, we can find some answers to your pain management questions. Stay tuned for useful information on products, and why they work.

Feel free to contribute your experiences with various over-the-counter products, as well as prescription medications. In the coming months, this site will be filled with my experiences, and hopefully, yours as well. Thanks for visiting, and please, come back soon!

Remember, pain management is possible -- and the more you are your own advocate, the better equipped you are to find real answers and REAL RELIEF! (Read Articles and Information on ThePainStore.com)