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Chronic Pain and the Opioid Epidemic

In the United States alone there are an estimated 100 million (that’s with six zeros) people who suffer from chronic pain. These chronic diseases by definition will never go away, and will get worse over the duration of a lifespan. Most of these diseases do not get many research dollars and are not well understood. The best most medical professionals can do is treat the symptoms and give sufferers coping mechanisms for a life that will never again be fully normal.

I’m one of those people.

I was 17-years-old when I first started dealing with chronic pain. I was a very active college student with goals to graduate in three years and take the world by storm. I participated in sword fighting and hiking on at least a weekly basis. I walked to school and visited my family on the weekends. Then I started waking up at night with deep, throbbing pains around my hips and shoulders. I chalked it up to stress, to fighting too hard, to hormones… but it didn’t get better. It got worse. The pains spread to other places, mostly the muscles lining my joints. My fingers. My toes. The arches of my feet.

I went to see my doctor who had a lot of ideas, but nothing he could certainly diagnose me with. He sent me to a rheumatologist fearing that – like my mother – I had developed rheumatoid arthritis. The specialist took blood and ran me through a bevy of tests. It wasn’t RA. It was a word I hadn’t ever heard before. He called it fibromyalgia (FM) and gave me a pamphlet and a prescription for 800 milligrams of ibprofen.

The pamphlet was nearly useless. FM was a term that created an umbrella for a number of conditions and symptoms related to chronic pain and fatigue. There were no good treatments, just a lot of suggestions. Take over the counter pain killers (carefully as ibprofen is hard on the stomach, acetaminophen hard on the liver and naproxen can cause heart palpitations), exercise, drink water, eat well, massage therapy, stay in bed, and if it got too bad come back and maybe he could prescribe a stronger painkiller.

Over the last 25 years medical understanding of FM has grown, but at a snail’s pace. Mostly research has been able to define what FM is not and other diagnosis have arisen to address the more specific diseases within the FM umbrella. There is still no understanding of why people get FM and there is no cure. They know it runs in families (my mother and both of my sisters have also been diagnosed, and we can trace cases of FM back through our genealogy to grandmothers and other folks who have described the same symptoms with no name for what was wrong). They know that it’s a disease of the nerves as well as the muscles. They know it robs you of precious sleep and fogs your brain. You can also have problems with your stomach and IBS. And the pain in and around the joints is always. It never goes away. There is no cure.

In the last 25 years I’ve been on at least 15 different medications trying to address the disease without only treating the pain. Some have worked better than others. Some have had staggering side effects and have made the situation worse. The most effective ones were often discontinued because they were only really effective for a fraction of users and there wasn’t enough profit to manufacturers for that fraction. We’re continually working for something better and insurance fights the costs at every step making treatment very expensive for medications that only blunt the issues.

When I get up in the morning (slowly), there is pain. When I go to bed (more slowly and often with help from my husband to get up the stairs), there is pain. In the middle of the night…there is pain. In the last 25 years it has gotten worse, and it has changed many of the paths I envisioned for my life. Many of the activities I once loved just aren’t possible any more. However, the list of things I can do to help the situation pretty much remains the same: exercise, diet, massage, TENS massage, heat packs, meditation, medications – including OTC pain killers, muscle relaxants to help stop spasms and let me sleep, and a dose of a mild opiate to be used when all else has failed. And I’m one of the lucky ones because I can generally manage. I don’t always manage well, but I manage.

I’ve read all the ‘miracle cures’ which show up on the internet on a daily basis and become pretty skeptical. Chronic pain is often the target of snake oil peddlers because folks with chronic pain diseases get pretty desperate for anything which will bring them some kind of relief. I’ve tried the suggestions that seem reasonable, and I’m always watching for other suggestions and new research.

I am 42 years old and I have a long life in front of me, which, unless we find new options, will always be dominated by living through pain.

So why am I telling this story now? Because of two things which are constantly in the news, but only telling partial stories.

First, there is a need for research into the properties associated with cannabis as a medicine. It’s not a huge stretch that there may be compounds in cannabis that are medically viable. There are many common medications which started with plants (willow bark, yarrow, opium to name a few), and many plants which can still help you along if you’re out in the wilderness. The problem with the cannabis situation is that it can be so easily misused and the fear of misuse and abuse is going head to head with the –hope- that there could be relief. When you are suffering and you read stories about people who have found a release from that pain, you desperately want to know if it will work for you too. In this case there is a huge void of what might be and what has been researched. We don’t know that using cannabis medically will work…but we don’t know that it won’t either. It’s a Schrödinger’s box of possibility, and we need to know if the medicine (without the psychotropic side effects) is alive or dead.

Second, the hand wringing, fear mongering, extreme reaction to all things opioid. I know the numbers when it comes to overdoses and addictions. I have a brother who has spent most of his adult life in one state facility or another. I do not deny that there is a problem. What I do condemn is the extremist, knee-jerk reaction which is punishing a whole lot of people who just want to be able to get through their day. People with chronic pain are all around you, working, raising families, taking care of others, and doing their best to get by. Taking all opioid options out of our war chest of treatment options drives people to try more extreme ways (and sometimes illegal ones) to get some kind of relief. Being shamed because pain killers allow us to function is an awful position to be in. I’ve seen many articles and such lately encouraging people not to be ashamed for taking anti-depressants because their brain chemicals don’t work right, but then I see posts and opinions about how taking a painkiller because your body chemistry doesn’t work right makes you a horrible person.

Do I think that nothing should be done to address opioid deaths and abuse? Absolutely not. Do I think the responses need to be measured and made with compassion for the people for whom these medications are a medical necessity? Damn straight.

Dependency is different than addiction.

I should not have to make the choice between living in staggering pain and taking my prescribed and monitored medication. Politically and lobby pressured legislatures and public opinion should not determine the medical fate of 100 million Americans, especially when you don’t know our stories.

Like many others, I am the face of invisible disease.

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