Pain Now or Dementia Later
Grappling with fear as I try to go off CRPS medication
In April 2024, I was diagnosed with a rare neurological disorder called Complex Regional Pain Syndrome (CRPS.) Around 200,000 people in the US are diagnosed each year, which is .058% of the population. Every time I write about my experience with CRPS, I feel guilty. My experience with a condition that at worst leaves people in constant excruciating pain has been one of the best anyone could hope for. My doctors claim that most people with CRPS experience remission but the data and the experiences of people on the CRPS subreddit do not back that up.
After an accident that broke my tibia, higher up than most people break it because I’m an overachiever, I didn’t regain the ability to stand. I am lucky in that the grotesque disoloration of my foot was a “textbook case” of CRPS according to my orthopedist, and I was referred to pain management immediately. Within days of my diagnosis, I received my first nerve block. How quickly CRPS is diagnosed and treated is directly related to severity of symptoms long term. I also have the warm version of CRPS which is reportedly easier to treat. There is nothing but luck involved in the outcome that I have had, which after six months of not walking, 3 nerve blocks, and daily medication, now I can go days without remembering I have CRPS. Hence the guilt. I was very lucky when others have not been. I have done nothing to deserve it but I am grateful for it every single day.
When my pain management doctor initially prescribed medication, he wanted me to take Lyrica and Amitryptiline. I had big reservations about taking a tricyclic antidepressant because I was on Nortriptyline for anxiety for many years. After reading a 2019 study that found taking anticholinergic drugs over the age of 55 caused “statistically significant” risk of developing dementia prior to age 80, I stopped taking all of the anticholinergic drugs that I was on. It was shockingly most of the mediciations that I was on! I really didn’t want to start taking another one but my doctor said that I could go off it at any time I wanted in the future. Given that I was still wheelchair bound at that point, dementia risk 12 years in the future wasn’t the biggest concern. At one point, I forgot to put my new prescription bottle with my other prescriptions and therefore did not take them for several days (I had forgotten they existed; I have ADHD.) I began having pain 2-3 days without it and thought I had done too much when cleaning the house. Eventually I realized that I had stopped taking the medication by accident. I started them again. Now, it has been about 9 months on Nortriptyline and I decided once again to try to stop taking them.
Interestingly, I read a literature review from 2015 that found little evidence that Nortriptyline did much better than placebo for treating neuropathic pain. That helped me feel a little bit better about going off of it but the main thing I’ve been experiencing the last two days is fear. I have gone from 0 pain to 0.5-1 off and on, but that’s a small price to pay for lowered dementia risk. When I worked in hospice, I saw many patients with dementia and if there’s anything I can do to make it less likely that I and my family will experience that, I’m going to do it. Most of what I’ve experienced has been more weird than painful. My heel feels like it’s waking up from being asleep with slight pins and needles sensations but all the time. A toe will ache for a little while and then stop, then a different toe will ache. The arch of my foot hurts sometimes but it goes away. The fear however, persists. What will happen an hour from now, a day from now? Will the pain continue to get worse? Am I making it worse by worrying about it? Before my third nerve block, I accepted that I may have to use a cane and occasionally use a walker even though I’m only in my early 40s. Nearly 6 months into remission from CRPS, I have lost that acceptance. It seems like a cruel joke that my choices may end up being either to live with pain now or to develop dementia later. Of course, I could still develop dementia even without taking anticholinergic medications. Then I’d feel silly for not having chosen to be pain free in my 40s, but I probably wouldn’t remember so I guess it wouldn’t matter.
Two days in it’s still too early to tell if I will be able to go off of it for good. But fear is riding shotgun and I’m doing my best to keep it from taking the wheel. I walked 7,000 mostly pain free steps yesterday, rode the stationary bike to warm up for my workout, and did my pre-CRPS leg day workout without weights. I love doing squats; I’m a freak, I know. I’d have a leg press machine if they weren’t expensive and silly to have in a home gym. This time last year, I couldn’t stand. I don’t know what I’ll be doing February 8th, 2026 but today I am going to continue being grateful for standing, for walking unassisted, and for 6 mostly pain free months. If I learned anything during the first half of 2024, it is that mobility is freedom. I’m going to claim my freedom for as long as I possibly can. (Yes, that is a Melissa Ferrick reference for any Gen X lesbians reading this.)