I have Ehlers-Danlos Syndrome (EDS), which means my chronic pain manifests in many different ways. I have joint pain, muscle pain, headaches, nerve pain, and more. Here's my list of the best gear I've found for managing my chronic pain.
Braces and Compression for Joint Stabilization
I have joint support for just about every major joint in my body. I have sets of two, so if both my knees hurt, I can wear a brace on both knees at the same time.
Most of my braces are the compression type for light-to-medium support because I feel like that works best for me.
Hand and finger pain:
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| These finger splints are neoprene. They provide support, warmth, and compression. |
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| The gloves are good for compression and warmth. |
Knee and elbow pain:
These are self-explanatory. I wash them and put them in the dryer to keep the compression level. Over time, the elastic wears out. But I’ve had them for years and they still work.
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| Compression knee sleeves |
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| Compression elbow sleeves |
Wrist pain:
I’ve tried the typical “carpal tunnel” braces but I found that the angle they hold my wrist at just makes things worse. These compression braces with adjustable tightness work much better for me.
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| Cuff-style wrist braces |
Ankle pain:
I like these ankle sleeves because the typical compression sleeve has a cutout for the heel.
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| Compression ankle braces usually cut into my foot; these are enclosed, like a sock with the toes cut off. |
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| Because I've sprained my ankles many times, I also have a rigid ankle brace I got from an ER after a nasty sprain. |
Neck pain:
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| I can’t use a regular pillow. I usually have to replace them once per year, but I nearly always get the same one. |
Back pain:
Car seats are usually uncomfortable for me. I found these gel seat cushions that work well. I pair them with the adjustable lumbar support in our car's seats.
I also use lumbar support when I’m sleeping.  |
| I roll around a lot and this lumbar roll helps keep my lower back correctly aligned. |
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| The other one drapes over my shoulders like a cape and snaps in place. It comes up the back of my neck as well. It's even washable! |
Sometimes I use a topical painkiller called Sombra. This is good for when I’m not at home or right before bed to help me sleep better.I've also noticed that topical Lidocaine is sometimes helpful when my pain is related to nerves (neuropathy). Lidocaine is a numbing agent, and you can buy it over the counter in lower strengths at many drug stores.
My dysautonomia makes my body temperature change so often during the day and night, I usually have to throw off the covers. But now that we live in the Pacific Northwest, it's cold overnight, especially during the winter. I bought a heated blanket that stays on for 10 hours at a time, turns off automatically, and has different temperature settings. It's also washable.
I don't have the blanket you see below, but this might be a good alternative if you don't like electric blankets. I'm seriously considering getting it! 😁
Books about Pain Management
In my former life as a healthcare worker, one of my jobs was at the clinic of Dr. Peter Abaci, a renowned and innovative pain specialist. While most other pain specialists will ply you with drugs or burn your nerve endings to manage symptoms, Dr. Abaci wanted to do something different and sustainable that worked.
Each employee got a free copy of his book, which was very informative and talks about drug-free ways to manage pain. I watched as people went through his holistic, comprehensive program and came through with their lives changed. People who were injured at work and ended up lying on their couch all day would graduate from the course and be able to go back to their jobs.
Take Charge of Your Chronic Pain was his first book (the one that I read), and since then he wrote Conquer Your Chronic Pain, which came out a few years ago. If you're looking for a way to manage pain without narcotics (which he shows through research will only make your pain worse), then take a look at his books and website.
My next recommendation is a book by Pete Egoscue, a physical therapist/sports injury expert. He developed a series of exercises to use based on which part of your body is hurting to create instant relief.
Then, he teaches ways to strengthen these body parts, so you don't have the same pain again. I found some of the exercises beneficial, especially the ones for lower back pain.
The last book is one I just found. After nearly six months in physical therapy since my diagnosis of EDS, I'm doing worse, not better. I was searching online and saw a journal article that mentioned this book.
I think they might have gotten a few things wrong in the article about EDS, but I was intrigued when they said the physical therapist who developed the exercise protocol specialized in treating patients with EDS. The single patient mentioned in the study had excellent results.
I know this book is pricey, and the caveat here is that the author is very insistent that you bring it to work with your care team and do the exercises only with a physical therapist. Based on my experience, I would recommend this so you don't injure yourself. The beginning exercises seem very easy, but it can be deceptive.
Some people I've spoken to swear by this book, but others say that it will cause a lot of flare-ups (which was the case for me). As far as I know, this is the only book of its kind, and it has excellent reviews on Amazon. The book is called Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS.
My physical therapist already had a copy, and we did incorporate some of the exercises into my therapy routine. But I'm not able to use the whole protocol right now; even some of the basic beginner exercises are more than my body can handle at the moment.
