Living each day in pain is hard enough. Being diagnosed an Intractable Pain illness such as Central Pain Syndrome 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 Central Pain Syndrome, Adhesive Arachnoiditis, Cauda Equina, Trigeminal Neuralgia, Interstitial Cystitis, Peripheral Neuropathy, etc., often go undiagnosed for long periods of time. They 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:
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!
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!
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!
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.
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!
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?
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!