The Problem With the Way Laws and the Press Treat CRPS

Published in The Mighty August 7, 2021

166506407_10225080786389324_4774093974237702994_nThe media loves to hype up a television series and as of late, they have destroyed public perception of CRPS (complex regional pain syndrome), as well as the experimental treatment of ketamine infusions. One would hope for a rare disease to be represented respectfully. Unfortunately, that often doesn’t happen.

In television shows, it seems that most people who have CRPS are portrayed as drug addicts. A case in point is the instance of a disease affecting a man on a television show, “Station 19.” His storyline quickly becomes one of an opioid addict, who still works in a high-stress, highly physical job as a firefighter. He is told that he will only be given pain medication for a little while and needs to simply consent to a surgery to “cure” his CRPS and send him back to working at the fire station.

These lies can cost real lives. For the record, there is no surgery to “fix” CRPS. There is to date no approved treatment for CRPS. It’s the most painful disease known to modern medicine and is nicknamed the “suicide disease,” as it is so bad that it drives people to stop living. There is no magic surgery, and for some of us it is not limited to one limb. There is nothing left of me that is not affected.

If you search, you will see over and over again the demonization of ketamine infusions, the only treatment that has been found to work for CRPS, but is still limited in use, as it is considered experimental. Patients and providers are fighting to fix that, but that search I suggested will come up with terms like “psychedelic,” “legal high,” “trip therapy,” and the list goes on. Each one of these inappropriate terms causes people to see patients as drug addicts. Patients are also seen as not really sick. I’m certainly not a skinny person, which is what many people expect to see when they hear “sick.” Ketamine infusions have been found to help other conditions also, such as depression. That being said, readers can understand how hard it is to deal with an invisible illness, never mind adding an experimental treatment. I have personally been told that I am on an “animal tranquilizer” and must be just an addict.

I have never “craved” ketamine. For me, it is like chemotherapy. They sedate me for over four hours to give me the medicine. Despite our best efforts and added medication for nausea, I often vomit from the treatment. My multisystem illnesses are very hard to keep stable. Yet stable here I sit. So yes, about every six weeks, I submit myself to infusion therapy and spend the day feeling not so great in order to gain a few weeks of decreased symptoms, and keep the ability to walk. Without treatment, it takes only a couple of months for me to become unable to get out of bed.

Facebook has now implemented a policy that the word “ketamine” is verboten. When I try to go to my support group, I see a warning about illicit drugs. It reads, “Are you sure you want to continue? If you or someone you know struggles with drug misuse, there are organizations that can help. The term you searched for is sometimes associated with the sale of drugs, which isn’t allowed on Facebook.”

Two steps forward. one step back. We have to once again fight to be seen as patients and not as drug addicts. I can’t tell you how discouraging it is to have a rare, incurable disease and have the one treatment that works be demonized. My treatment support group can no longer even type the word “ketamine.” Our support group, made up of patients and providers, gets a strike if one of us uses the word. Now on Facebook, anyone talking about ketamine has been deemed potential drug users. For over a hundred years there has been no treatment for CRPS. We finally have one, but we can no longer talk about it online. We have to type practically in code to keep our group together, the group that has been a beacon of hope for people with a rare disease.

There is a group of providers who are now fighting for all of us in America to not only have access to the treatment, but have it approved by the FDA. The first step in the process has already been submitted by the ketamine task force of providers. If you want to see more information on the taskforce, you can find it at ketaminetaskforce.com. Once the treatment is recognized, patients will have access to their treatments through medical insurance. Right now, almost every patient pays out of pocket in full for the treatment. Having a right to try a medication doesn’t mean that your insurance will cover one dime of it. For far too many, this life-saving treatment is financially out of reach.

My personal doctor has told me to hold on; he is doing everything he can to get our treatment approved, to force insurance companies to cover the very treatment that keeps me and thousands of others alive. My doctor is the vice-president of the task force. I was floored when I realized that not only did my doctor not close his doors at the start of COVID. I will never be able to say enough about this man. He saved my life and helped countless others.

State laws reflect some of the lies the media portrays. In some states, “cancer” is written into state statutes that regulate pain medications. It is written in black and white that the worst pain is cancer, while other patients with extreme pain are questioned. It’s horrific discrimination based on old-fashioned beliefs. Cancer pain can be horrible; I’ve had it twice, but laws need to be based on science. My own state of New Hampshire has it in statute that “cancer” is the worst pain, a lie that costs lives. You wonder why 70% of CRPS patients attempt or consider suicide? I don’t; I live it and lose parts of my soul every time I see another post memorializing a friend.

There are positive movements. New Hampshire actually changed its laws in a positive direction. When I presented in front of the New Hampshire Senate Committee on Health and Human Services and I realized that the Chair, a doctor himself, was nodding in agreement with me, I cried. He understood that the McGill Pain Scale is the medically recognized way to measure pain. Things like childbirth without medication are scaled higher than a broken bone. Cancer is not the worst pain on the scale; CRPS is. The committee led the way and the bill was passed into law. In part, the new law creates exemptions to the prescribing rules for situations in which an opioid is being prescribed for the management of chronic pain.

I hope that we as a species “get it” when it comes to following science, and not political or sensationalized news for understanding a medical condition. A girl can hope. CRPS is not terminal, but it can mean living with pain worse than amputating a limb. Medical science has no idea why CRPS happens, and in over 145 years since its discovery, how to cure it. It’s a life that is full of treatments and medications forever. Can we now recognize science and adjust to meet current knowledge? Stop teaching providers and citizens false narratives, and start insisting on the best care possible for anyone, no matter what the disease is. I fear that until we succeed in this, we will continue to lose lives to complex regional pain syndrome.

Posted in MY BLOG.