Monday, November 1, 2010

Anti-Opioid Sentiment Harms Intractable Pain Patients

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?
  • 1 comment:

    1. Brilliant Comment!Thank you so much for speaking up for so many others. I am one of those Intractable Pain patients who is taking a reformulated medication. You are quite correct that the reformulated medication -- made for people like me -- is no longer working as it has for me for 5 years. I have Multiple Chemical Sensitivity because of my specific spinal cord injury which means that very few medications are effective for me. In fact,I can take only two pain medications that work with any efficacy and whose side effects are not overwhelming. Oxycontin IS one of the medications that brings my Intractable Pain under control after 5 years of treatment. My integrated treatment plan of medications, supplements, home-based daily physical therapy and meditation had brought me from a bed bound state to somewhat normal existence which to me, as a disabled women, is absolute paradise!

      Since the reformulation, I am now losing my pain control. In my case, that means I am back to fighting the mind numbing nature of intractable pain at the levels of 3 years ago. As you have stated so elequently here and in other places in your blog, intractable pain brings with it more than suffering; it also endangers heart and adrenal health. I and other patients who depend on Oxycontin working "as advertised" now will face danger of falling health standards all so people who snuck around the law to obtain a chemical that was NEVER supposed to be theirs in THE FIRST PLACE can be "safer." Argh! It gets frustrating.

      Thank you for giving us a place to express our shared frustration on this topic. God bless you much.