Ehlers-Danlos Syndrome (EDS)
Introduction
Ehlers-Danlos Syndrome (EDS) is a genetic disorder that affects the connective tissue in the body, leading to a variety of symptoms such as joint hypermobility, skin elasticity, and tissue fragility. EDS is known to be associated with a range of comorbid conditions, including autonomic dysfunction, chronic pain, and gastrointestinal issues. In recent years, there has been growing awareness of the high prevalence of EDS among individuals with dissociative identity disorder (DID) or who identify as plural, and the impact that this comorbidity can have on their daily lives.
Managing EDS symptoms can be challenging for anyone, but it can be particularly difficult for plurals, so we'll explore the comorbidity of EDS and plurality, and folks can put personal experiences & what works for them as far as ergonomic solutions, accommodations, and assistive technology that can help alleviate the impact of EDS symptoms on daily life. By providing practical solutions, we hope to improve the quality of life for those who are living with these conditions.
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Personal Experiences, Modifications & Adaptive Tech - Crisses
Note some of our choices are influenced by other physical issues, and how our hEDS manifests. We also have CIDP (chronic inflammatory demyelinating polyneuropathy), and cannot tell where one thing ends and the other begins. Our CIDP affects our reflexes, and if it goes into chronic flareups can cause numbness, neurological pain, weakness, loss of balance, loss of ability to stand/walk, and potentially if left untreated may even affect the breathing reflex. We are in remission and have a lot of personal practices around stress and triggers to keep it that way.
Chronic "Growing" Pains
We had bursitis in our knees & hips, was dealing with doctors to check for Marfan's syndrome, and got a diagnosis for a hiatal hernia in 1986. Because of the hernia, they said no more caffeine, and when we stopped the caffeine our pain went from 6-7 down to a very manageable 2-3 most days. We were addicted at the time, and would make mistakes not being sure about what had caffeine, and the pain would tell us.
Can't say whether that was MCAS random sensitivity or if it had any other reason to be associated with joint issues. I'd say investigating what might be causing reactions and trying an elimination diet might be good (doubly so with Crohns).
The other "amazing" thing that helped us with wrist & hand tendonitis issues was B vitamins. We thought it was carpal tunnel, and it was recommended to do 100-600mg B6 a day, and we added a B complex to that whenever we took B6. We started with 100MG and within 2-3 days our wrist & hand pain subsides. Any time we'd get a flare, we managed it ourselves. Our doctors recently poo-pood it (after we were doing this dance for about 25 years) saying "oh, B vitamins reduce inflammation." 👀
So wait — I can choose between other meds & treatments to medicate the issue or reduce inflammation — or just take B vitamins and it goes into (complete!) remission in a couple days, but that is something to ignore and shove aside?
Anyway, no guarantees this would help anyone else. but it makes a HUGE difference for us. We stay off caffeine & take extra B-vits as needed and reduce our symptoms. YMMV.
Sleep Hygiene/Ergonomics
Sleep is a significant “immobile” period of the day, and it may be helpful to take care of ergonomics while asleep. When we had a particularly bad flare in 2021 we improved ergonomics across our whole life.
For sleep we have sleep wrist braces in case we need them. We sleep with our wrists straight since 1994…makes a huge difference for us. The wrist braces for sleep were needed in our 2021 flare where we got particularly bad arthritic pains too.
We got a u-shaped body pillow and now sleep in something of a nest at night. We have found a position that supports our back and pelvis that takes pressure off our shoulder (long time side sleeper, we also ended up with frozen shoulder because our shoulder was dislocating while we were asleep) and off our pelvic joints (SI pains) so we start the day in less pain.
The main point is to keep joints from hyperextending and preventing subluxations/dislocating at night when muscles are more lax.
Low-Impact Core-Building or Full-Body Exercise (gently, when/where possible)
Add to that the benefits of full body gentle low impact exercise. Anything core-building, that doesn't stress joints. Balance board, swimming, flow rope, rowing, etc. We learned the hard way to avoid martial arts that focus on manipulating joints (we took Aikido. Oops! Wrong martial art. We also couldn’t do jumping jacks…and ended up needing surgery due to prolapsed organs. We weren’t diagnosed yet.).
Other low impact stuff is ok too, although be careful about falls (wound healing can be wonky, and who wants to fall anyway?). We like biking, walks, hiking. We can't do jogging or running for much the same reason we can't do jumping jacks. Everyone's body is different, though these issues are known for zebras).
Daily Ergonomic Issues
Our sitting ergonomics are important because we work at a computer much of the day. We use a ball chair the most. That's core-building & posture balance intense choice. Switching from lax posture to active posture is challenging. We have a very large ball so our desktop is at thigh height. We have a foot riser under our desk now (home built), wrist rest, got a new expensive ergonomic mouse (the ContourDesign RollerMouse Pro…very pricy). Monitor height & keyboard height are important. We switched from querty to Dvorak keyboard layout in 2005. No regrets. But we would recommend checking out CharaChord if there's a budget for pricy ergonomic keyboards. We have our eyes on them. Use dictation when possible or needed…we have an Otter.ai account and we use it when we can.
Oh, more ergonomics…we use anti-fatigue puzzle mats in our kitchen. Now we keep them 3 layers deep by the sink and our preferred food prep areas/stove burner…because we are short (5'4) these both help with foot/leg fatigue and give us a little height so there's less arm/shoulder/wrist/hand strain for food prep, washing dishes and cooking. We also always need to wear shoes due to foot joint pain.…we got cork soled sandals for indoors “slippers” (that adds some height too). Makes a big difference especially since we love cooking.
Resources/Research
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