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Ehlers Danlos

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  • Ehlers Danlos

    I’ve always been bendy, but it’s gotten to be more of a problem as I’ve gotten older. I was just diagnosed with hEDS. Thankfully I don’t dislocate, just sublux, and I have a lot of the associated issues (gastroparesis, dysautonomia, etc). The things that bothers me the more is how it affects how I can work with my horses.

    I can’t ride anymore. I don’t have a safe riding horse and don’t have access to lessons. I’m also having a really hard time eating enough to not keep loosing weight. I also can’t tolerate heat much at all and can work with my horses from the ground either. Cold also takes a lot out of me.

    I manage feeding fine and have to do their hoof care. Yes I spend 2 days in bed after but it’s better than paying someone to make them lame, which is what has unfortunately happened with all the local farriers.

    Grooming however really kicks my butt. It hurts my hands and shoulders which all sublux a lot. It also get my heart rate going way too fast. I’d rather not pass out while grooming. I am working on ring splints but it’s proving very challenging. I have no idea how to support my shoulders, especially since I’m allergic to a lot of braces I’ve tried.

    I have a plastic flower curry comb and a furminator which my ponies all like but are hard on my hands.

    I’m still working on the doctor angle of things. The actual horse care thing is when I’m having problems with. Especially since my ancient pony loves grooming but it’s just killing my hands and shoulders too much. Circular motion or straight, equally bad. I wish I had a grooming robot so at least all my ponies could be groomed well. Right next my dad does most of the grooming but he’s afraid of horses and isn’t comfortable doing bellies and legs.

    I know it might be going out on a limb hoping someone else has EDS, but I thought it’d be worth asking.

    Any ideas or suggestions?

  • #2
    Fellow EDSer here with Dysautonomia (POTS) and MCAS. I think there are a few other zebras on here. I was diagnosed a couple years ago after a summer spent in/out of the hospital after a lifetime of symptoms. Horses are definitely challenging for my body but I do feel riding helps keep me more fit especially since muscle is hard to get with EDS. Have you tried braving and thumb splints? That can definitely help as well as PT to help build muscle safely.
    "No matter what anybody tells you, words and ideas can change the world."
    -Dead Poets Society

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    • #3
      Have you thought about driving?

      Comment


      • #4
        Well if it's any consolation on the ring splints, I've finally accepted that I'm going to need them too, as writing my more recent spate of finals left me unable to use my dominant hand for about 10 days. If it's an insurance issue, there are some jewelry makers on etsy who do beautiful work and have put a lot of time into studying splint making techniques.

        Have you looked into KT tape for your shoulders?

        FWIW I had a lot of success with physical therapy. I payed out of pocket for mine since it was cheaper than the copay for my insurance. But I imagine there's an adaptive exercise program at your local YMCA or something. I'd bet water walking or something similar would help build physical and cardiovascular endurance without as much impact.

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        • Original Poster

          #5
          Thanks everyone.

          I’ve tried working with my hand therapist for ring splints. We weren’t able to find anything that would stabilize my darn subluxing pinky finger. I’ve found someone who makes ring splints, but work has been nuts and I haven’t been able to follow up on that. Finding things that work in metals I’m not allergic to is the issue.

          I’m unfortunately very allergic to KT tape. It was so helpful when it worked but it caused too many issues the last time I used it. Between MCAS and probably needing a port in the future, I’d rather avoid tapes to try to preserve as many options as a I can for as long as I can. I’ve learned the hard way there’s no way to predict just what odd thing I’ll react to next.

          I really wish water therapy/swimming was an option. I’m just too allergic to pool chemicals these days. I love the beach but between sun screen allergies, heat intolerance and the fact the water doesn’t get above 60 even in the summer I can’t do it. I wish we had the resources to have a pool at home that’s treated in a way I’m not allergic to, but it’s not an option. I can walk a lot at work since we have air conditioning.

          i wish PT were more accessible. I live in a rural area and the local PTs are dangerous, encouraging me to push pass my end range of motion. I tried not to but still wound up injuring my bad leg. I can’t drive for various reasons and all my doctors are in Boston because of how dangerously ignorant and unwilling to research things the local health care providers are. I’ve tried advocating for myself but there’s nothing I can do if they don’t want to look at any of the information I bring with me.

          Balancing energy is also a problem, since gastroparesis limits how much I can eat. After spending 3 hour putting in electric tape for my horses, I’ve had blood sugar crash issues today. Totally normal for me. I felt fine when I was working but am majorly paying for it now. I’m not quite sure how to balance energy needs and being able to build muscle. And as far as the know, there’d no way to buy muscle without exertion

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          • #6
            I also have EDS. I have no advice, my diagnosis is still very fresh to me. Honestly when I first was told I had it, I wanted to blow it off as not a big deal.

            I haven't been riding regularly (because I put my horse down.) I'm feeling the effects of not riding. Things were not easy but I think it really helped keep me fit. Right now I'm trying to work out and lose a bit of weight. It's a real challenge because after every workout, something is killing me. I try to just keep chipping away.

            I'm 30 years old and have some riding goals that I'm really looking forward to doing. I'm hoping to get on it now because I'm not sure what the future holds with EDS.

            I'm so sorry things are so difficult for you, OP. I admire your strength though, I hope you figure out ways to help with what's going on. As far as the sublax, can you describe how that feels? Do you see it? Or does a joint just hurt like hell and feel weird? I've only fully dislocated my jaw and of course that as really obvious. But I wonder if some symptoms could be a sublux of a joint.

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            • #7
              Just chiming in because i have cEDS, MCAS, dysautonomia, VVS, gastroparesis, etc. too. Stopped riding, but still have horses at home. I manage by trying to make things as easy as possible - they live out, I have a great feed cart, etc. Grooming would leave me knackered too, so watching to see if anyone has any helpful suggestions for you. One thing I'm considering for home of the heat intolerance related exhaustion is a cooling vest, perhaps one of those might be useful to you as well?

              Hugs to the lot of us.

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              • #8
                Yes, there’s a bunch of us zebras here. You might want to check out the EDS and Cusack protocol group on Facebook. It doesn’t work for everyone but helps some people. Pilates with a PT experienced with EDS had also been helpful.

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                • Original Poster

                  #9
                  I tried a really light cooling vest last year, but it was still too heavy. The weight made it impossible to breathe. For whatever reason, I have weird muscle weakness generally and specifically with breathing. I can’t wear a purse, since even a light one is too much work to breathe against. I have a cooling necklace thing from amazon that kinda works. Ace bandaging ice packs to my stomach and back help to a point but just for walking. Too insecure for anything else.

                  I’m already doing a bunch of supplements that are part of the Cusack protocol. Aloe helps quite a bit, though capsule form works out better for me (designs for health aloe 200x).

                  I found some nice brushes from Oster. The ECS blue curry combs fine and coarse. The handle makes them a bit more comfortable to use. The fine is easier since there’s less resistance.

                  Now I just need to figure out how to work mine easier. Free lunging kinda works but I’m burning too much energy doing it and am once again getting dangerously thin.

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