Pain Mismanagement

Anyone who has listened to the news lately has heard there is a heroin epidemic, which has lead to many deaths. Heroin is a drug in the opioid family. As a result, there has been a massive crackdown on opioid prescription medication, especially for those of us who live with chronic pain. It was difficult to have chronic pain managed correctly before the crackdown, generally because many doctors don’t have proper training in managing chronic pain, including pain management doctors. Diseases like fibromyalgia were viewed with skepticism by the medical community, leading to under or non-medication of the pain.  Anyone who advocated for themselves and asked for proper pain management was treated like a drug seeker. And now, because lawmakers are panicking over heroin overdoses, proper pain management will become even more difficult to achieve, especially if states follow through with laws curtailing legal prescription opioid use.

A few statistics
The CDC states that there were over 8,200 heroin-related deaths in 2013.  Compare that with an estimated 100 million Americans who live with chronic pain, 10 millions of those with fibromyalgia alone.  For the sake of argument, let’s assume that every one of those heroin-related deaths came about because of an opioid pill addiction that let to heroin use.  That would mean that lawmakers would severely limit access to prescription opioids for chronic pain patients because 0.0082% formed an addiction and died.  Let’s compare that with an estimated 33,636 firearm-related deaths in 2014, 88,000 alcohol-related deaths each year from 2006-2010, (1 in 10 deaths each year) and more than 480,000 tobacco-related deaths each year.  Measuring for a period from 2005 – 2009, 163,700 cancer deaths were attributable to cigarette smoking.  These Merchants of Death continually get a free pass, even though they are responsible, directly or indirectly, for well over a half a million deaths each year.  Meanwhile, the chronic pain community is made to worry whether or not they will be able to walk this month because a doctor and/or a lawmaker decided that 2-3 Tramadol for the month was more than enough.

David versus Goliath

Advocacy
It doesn’t require too much critical thinking to understand why the Merchants of Death are able to peddle their wares without much governmental interference, while advocacy groups like the National Fibromyalgia and Chronic Pain Association barely get any notice.  It all comes down to money and power.  A negative rating for a congressman from the NFMCPA means nothing.  Anything less than an A rating from the NRA, however, is political suicide for a Republican.  While President Jan Chambers of the NFMCPA lobbies tirelessly for the rights and needs of the chronic pain community, advocacy lies primarily with us, the patients.

Government
We are a nation of laws and beauracracy.  So what on earth are we supposed to do when lawmakers and governmental agencies institute policies designed to curb drug abuse, but lead to nothing but harm for those in the chronic pain community?  The DEA, CDC, and FDA are all trying to attack the problem of drug abuse by limiting the quantity of pills prescribed and increasing the frequency of office visits in order to obtain a new paper prescription.  No longer are doctors allowed to call in refills for drugs like Tramadol and hydrocodone.  For people like me, this is a minor annoyance.  But for people who live far from their doctor, rely on others for transportation or have no transportation, or cannot afford to pay the copay or co-insurance for an appointment just to get a prescription, this is a hardship.  The NFMCPA conducted a survey, (one in which I took part) to assess the impact of the new opioid prescribing regulations.  It only took 100 days before unintended consequences took hold for law-abiding chronic pain patients.

“People also cited higher expenses from more frequent doctor’s visits, changes to other prescription medications, higher medication co-pays, greater transportation expenses for extra doctor visit and lost work revenue related to unrelenting pain.”

And these aren’t even the worst problems caused by the new regulations.

“Shockingly, 27% (n=931) reported suicidal thoughts due to being denied their hydrocodone prescriptions.”

You see, if regulators had taken a half a second to pull themselves out of opioid hysteria, (it kind of reminds me of when there was panic in the 90s over marijuana) and think, they would have realized that less access to medications that allow chronic pain patients to function would lead to an increase in suicide and illegal drug-seeking.  And it’s not because we’re addicted.  It’s because, when you hurt because you simply exist, you’re going to become depressed.  It’s likely the reason depression is often comorbid with chronic pain.  When you can’t stay in bed because it hurts, but you can’t get out of bed to go to the bathroom because touching your feet to the floor hurts more; when you can’t play with your children and are constantly having to tell them no because it hurts too much to walk down the street to the playground and sit on horrible park benches; when you’re unable to stand and cook dinner for yourself and your family; when your house is so dirty and cluttered because it hurts too much to vacuum or pick things up off the floor; when you can’t spend time with friends the way you used to because it causes too much pain and fatigue to leave the house; when having stress in your life means that your body will respond with increased pain….that’s pretty goddamn depressing!  And now, on top of that, you’re going to deprive us of the medication that allows us the ability to do the few things we can do?  I will admit, even now, my thoughts have turned to suicide.  The idea of spending the next 40-50 years in debilitating pain, which is likely to get worse as I age, is pretty overwhelming. I don’t want to think about how I’ll feel if I can’t have my pain managed properly.

State and federal lawmakers have also joined the heroin abuse hysteria.  Some, like Vermont Governor Peter Shumlin, have ignorant beliefs like, “You can’t convince me that we’ve got 250 million Americans in chronic pain.”   Once again, we see another instance of lawmakers taking medical decisions out of the hands of the doctors and patients, creating laws and policies from a myopic point of view.  I believe Dr. Steven Stack, President of the American Medical Association, explained it best when he said, “The complexity of the problem makes it difficult to create a successful one-size-fits-all approach.”

Fortunately, President Obama, Senator Mitch McConnell, and some state lawmakers and governors  are on our side when it comes to not limiting doctors and patients in their opioid prescriptions.  Not only did President Obama acknowledge the reality of our pain, he understood that simply taking away an avenue to pain relief is unrealistic.

“If we go to doctors right now and say ‘Don’t overprescribe’ without providing some mechanisms for people in these communities to deal with the pain that they have or the issues that they have, then we’re not going to solve the problem, because the pain is real…”

Alternatives
The American healthcare system has set us up to fail.  Insurance companies and pharmaceutical companies as bedfellows have created a corrupt system where medication is the only available option for treating chronic pain.  Functional medicine doctors, who employ an integrative approach of traditional and complementary medicine, often don’t accept insurance.  Physical therapy is often touted as a treatment option.  If it helps, insurance may not cover sessions or ration the number of sessions you’re allowed.  Aqua therapy is a wonderful method for building strength and getting the exercise that doctors are always badgering you to get.  I was lucky that my sessions were a part of physical therapy and were covered by insurance.  If you’re not that fortunate, good luck finding a class that’s at a reasonable time, location, and price…or at all.  Chiropractic care, if covered, isn’t always in network. Unless you have a Cadillac insurance plan, acupuncture, (which is very beneficial to chronic pain sufferers) isn’t covered. When I went to sessions, we were spending $320 per month.   The list goes on.  For many of us, our hands are tied.  Unless you’re well-to-do, your treatment options are severely limited to what insurance will pay for.  And what insurance will cover is medication.
Millions in our country are suffering silently because of chronic pain.  If state and local government has its way, they will suffer even more.  To interfere with the doctor-patient relationship, which determines the best treatment options for the patient, will create unintended consequences, many like the ones they’re trying to curtail now.  Desperate patients may turn to the black market, illegal drugs like heroin, or make the most desperate and hopeless decision of taking their lives so that the pain will stop.  Rather than pour as much focus, energy, and money into this so-called crisis, why not allocate it to research to understand and cure diseases like fibromyalgia.  I would give up my opioids and other medicinal cocktails in a heartbeat if it meant there was a cure for my pain.  Given the conversations I’ve had with dozens of other chronic pain patients, they’d be willing to do the same.  In fact, no one I have ever spoken with, (including myself) has ever been pleased to add more pills to their daily regimen.  Rather than treating us as criminals or potential criminals, lawmakers need to listen and believe us when we say our pain is real.  And until we find a cure for the pain that ravages our bodies, we need to be allowed access to what works.

Chronic pain support groups

 

Community

 
When I began my journey in the world of fibromyalgia, I had nobody.  True, I had my husband, family, and supportive friends, but I felt like I didn’t have many who knew exactly what I was going through.  I felt so alone in my pervasive pain and persistent exhaustion.  I began to search Twitter for people like me:

• People who had spent several years trying to figure out what was wrong with their bodies
• People who had been dismissed as crazy, a hypochondriac, attention-seeking, and dramatic by doctors, family, friends, and co-workers
• People who had no idea what to do now that they did have a diagnosis because the medical community had little to no idea as well
• People who knew what it was like to be consumed by grief, fear, and hopelessness because their disease was forever
• People who decided that this was bullshit, and giving up was not an option 

And I found them.  I found people like Julie Ryan, who collects and shares medical information/research so that people in our community have avenues from which to tackle their illnesses.  I found people like Chris Dean, who made me snort with laughter in spite chronic pain.  I found people like Trisha Pearson, and identified with her everyday struggles.  I found Miss Treated, which gives women opportunities to share the misogyny they experience with doctors, and Dr. Ginevra Liptan, whose goal is to bridge the divide between fibromyalgia and the medical world.  

All of these finds were and are fantastic, (and there are so many more out there) but I needed something more.  I needed a community of people with whom I engaged on a more personal level.  I needed to be able to whine about not being able to stand long enough to do the dishes.  I needed to be able to ask about different medicines and procedures, how people reacted with them, and if my experiences with them were common.  I needed to feel like my brothers and sisters with pained arms cared about me and my whole life, not just the disease.  That’s when I found Elizabeth Christy, whose Parents with Pain Facebook group changed my life.  

In PWP, people follow up with one another, asking how their appointments went or if they’re feeling better after a flare.  We lift one another up, but keep it real at the same time.  No one is shamed into being more positive; quite the opposite, in fact.  Whenever someone apologizes for “whining” or venting, we quickly remind them that PWP is a safe space, intended precisely for catharsis.  No one is informed that their pain is for a reason and that god won’t give you more than you can handle.  No one is badgered into a specific medical or nutritional regimen. Plenty of people in PWP are gluten-free or paleo or juicing, and will share their experiences with those ways of life.  Rarely does sharing these medical and life choices/treatments result in a war of words.  (Seriously, I can count the number of times on one hand when there have been tense exchanges.  No one has ever cursed anyone out or flamed out calling someone Hitler.)  We’ve also seemed to avoid the fatal flaw of many support groups; there isn’t an echo chamber of learned helplessness and fatalism.  We rejoice with each other when something wonderful happens, like finding a doctor who takes you seriously. We empathize when members are feeling defeated and depressed.  We offer to cut a bitch when someone has been a dick toward one of our members.  Seriously, someone offered to phonebomb a receptionist who made fun of me today because I couldn’t find a word during a fibro fog moment. 

I feel extremely lucky to have such an extensive support network.  As the writer of the Christian creation poem wrote: It is not good for man to live alone. We with chronic pain and fatigue tend to be isolated from the world because of our condition.  And once we are in the world, we find that very few, as sympathetic as they may be, have no idea what we’re going through. I encourage you to join us or find a group for support. The load is lighter with many hands to carry it.