Mastodawn

Back in February I asked my hand doc for a referral to get braces for my left hand, which needs surgery, but can't have it until my bones have more density. Unbraced I keep hurting myself (there's a bone spur involved in the whole mess).

An imperfect brace made of plastic and velcro (yes, different plastic) was made 6 weeks ago. It needed to be remade a bit last week because it's affected my sensation in my thumb and I really need one made entirely of metal so I can wear it in the shower (where I tend to hurt myself even when I'm trying to be very careful).

Today we needed to do an assessment and, despite the issues with the imperfect brace, my pain level is lower, plus my hand and thumb are stronger!

The wisdom on bracing for conventionally jointed humans is to brace for as short a time as possible so that the body doesn't become overly reliant on the support. It is very common to hear this advices from physical therapists and occupational therapists who don't regularly work with hypermobile patients.

Those of us with silly putty for connective tissue benefit from proper bracing. Preventing our joints from going even close to subluxation is important. Even subclinical subluxations (these don't show up on an x-ray usually, a trained therapist or other healthcare provider has to feel for them) can cause constant pain and leave you vulnerable to further joint instability.

I now wear light ankle wraps when I'm practicing yoga asana and high top boots for walking outside. This switch has prevented injuries to my ankles, knees, and back. It's also prevented falls

Sensory issues* not withstanding, if you can stand to brace an unstable joint, don't be afraid to explore it if you are living with #HSD or #hEDS.

*I cannot abide a brace for the SI joint, even though I would benefit from wearing one, because it's sensory hell.

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Sherri Koehler (she/her)

On the “not success” side of things, my monthly dose of a monoclonal antibody to cause anabolic bone growth to treat osteoporosis is keeping me in a constant flare. Given that it sets off a histamine reaction that I need to treat with Benadryl before and after, this isn’t a big surprise.

My flares increase my joint instability. What this means: I recently attempted moving a pillow at 3am, it is a heavy pillow. This dislodged my right arm off my shoulder. Not fully into a subluxation, but any amount of joint separation is pretty miserable and can lead to a worse injury.

I also got my si joint out of place. I’m not at all sure how it happened this time. Last Friday one of my PTs put my right arm and si joint back in place.

Two days later and my left arm felt off again. Probably from sleeping on my left side, the usual reason. Luckily I see my other PT next week.

I’m 1/3 the way through the one year of treatment on this osteoporosis treatment. I suspect I’m one of the first patients my endocrinologist had with any of the EDS variants and MCAS. I won’t be the last, so I’m trying to document my reactions, e.g., I’ve redness and swelling at the injection sites that lasts for days, which surprised my nurses.

My primary care doc suggested Kinesio tape as a method to stabilize my shoulders and si joint. Abdominal compression, like a si belt, aggravates my very sensitive upper gi which then sets off dysmorphia. It’s a pretty terrible combination, so taping is a great idea.

It’s important to stick with the full year of treatment as it very well may reverse my condition, at least in my spine. So, yes, I am contemplating taping my ass together and my arms on for the rest of the year, if my skin cooperates.

Might need to buy the big roll of tape!

Romosozumab (Evenity) is the osteoporosis medication I am receiving. I’d love to hear from anyone else going through this treatment with these conditions.

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NilaJones 2d ago

@PDXyogini

Oof!!!

I've worn a plastic and velcro hand brace (for a year or two, EDS also) in water. Bathing, washing dishes, etc. It was fine

The mcas trigger meds sound awful 💜🫂

I'm sure you know, but there are a million kinds of athletic tape. KT is very fashionable, but that doesn't mean it's the best for your purposes. Especially if you tend to react, on your skin. There are some good undertapes that can be less itchy, and then you can put other tape on top

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Sherri Koehler (she/her)2d ago

@NilaJones 💚 thanks for empathy, it’s funny while also terrible! It’s nice to finally have validation and treatment after years of saying several joints felt slightly off and being told that wasn’t possible, had I considered losing weight?

I got a custom molded plastic & Velcro brace last month that’s helped a lot already! They needed to add some foam to it as well, so it’s not ideal to get it totally soaked. I can get gloves for washing dishes over it, just.

Today I was measured for a silver ring splint for my thumb that can get wet and be dried immediately. The OT said all of her patients who have been able to get one love them. Turns out the Oval-8 splints are for the distal joints (fingertips), my worst instability is proximal (where the fingers join the hand).

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NilaJones 2d ago

@PDXyogini

Oh those silver ring splints are beautiful!