Hypermobility

A common comorbidity for autistics is Ehlers-Danlos Syndrome (EDS). There are, I believe, 13 (or 12?) types. Though I don’t fit the general criteria for getting a blood test for EDS, I am hypermobile in many of my joints, such as elbows (I can hyper-twist but not hyper-extend), fingertips and toes, hips, knees, wrists, ankles and neck.

For a lot of people with EDS and hypermobility they go through a lifetime of being able to do funny tricks as well as chronic pain. I was told I could do physical therapy, but that actually causes me more pain. I see a chiropractor fairly regularly and that helps a lot more. As does being able to take a muscle relaxer before bed as needed.

How it affects me? My hypermobile joints, as mentioned above, don’t come completely out of joint, as happens with a lot of EDS people, but they do sublux. Sublux means that they come partially out of their natural joint. This can range from achy to pass-out pain. I’ve been everywhere on that range. I crack my neck and hand knuckles a lot. This helps release pain and pressure. With my hips it helps to get up and walk carefully. Often they will pop back into place. With my knees I can’t take stairs up or down at the time because I will fall. I walk it out, stretch, or take the elevator at work. I take Tylenol during the day and my muscle relaxer at night if need be.

I bring this up today because one of the biggest stressors on my joints is sitting in bad chairs for long periods of time. I have to personal development workshop days over zoom and my dining room chairs are hard. I bought a thick sitting pillow, which has helped. I can’t imagine the pain I’d be in without it, but 8 hours (including breaks) is such a long time to sit and not move much. I sit for 80 minutes in a chair at work for each class, but I get up and walk a lot. I walk 2-3 miles a day at work. I’ve walked .25 miles today and my body hates me. One more day and I’m done, but it’s a lot on the body.

For more info about EDS, or if you wonder if you may have it, check out the EDS Society page here: https://www.ehlers-danlos.com/what-is-eds/

One response to “Hypermobility”

  1. I.AM.BRAINFUGGED Avatar
    I.AM.BRAINFUGGED

    Well this is new to me! Someone whom I have so much in common with! I have ADHD (ADD), currently undiagnosed Autism (but pretty sure I’m autistic af), EDS and queer lol. Nice to meet you! 🙂

    Never heard someone say that physical therapy makes the pain worse, but as a matter of fact I have experienced that too, now that you say it! I twisted my knee in january (full patella lux) and it felt like it only got better once I STOPPED with physical therapy! Thank you for giving me that insight, I hadn’t thought abt it that way before.

    Liked by 1 person

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