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Anyone else here with hypermobility syndrome/ Ehler-Danlos?

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  • #16
    Wow, I had no idea this was a syndrome. I have the hyper-flexy joints, too. I have tendonitis, chronic ankle, back, and hip socket pain (my doc told me this was from my leg being set into the socket wrong, right foot turns in). I get weird bruises, which may be from vitamin deficiencies. My doctor never mentioned this syndrome, is it something that has only been recently accepted?

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    • #17
      Ehlers Danlos Syndrome has been recognized for 80+ years, but unfortunately many, including doctors, are woefully ignorant of it. It sounds like you manifest several symptoms of EDS, and if your doctor knows you have hyperextendable joints combined with chronic pain and has not mentioned EDS... you really might want to go to another doctor or get a second opinion.

      Good luck!
      Live Clean, Love Hard. Or vice versa.


      Female! Height: 5'10.5" HW: 161 SW: 135 CW: 124 GW: Whatever number my body wants to be when I'm eating and moving well - trying to get that muscle mass up.

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      • #18
        I've found some interesting info here from an EDS sufferer re: EDS and the MTHFR polymorphism.

        * MTHFR Polymorphism - HEDS - Dysautonomia - Masto* - Home

        I have high-histamine/mastocytosis symptoms, and this piece indicates a link with EDS or hypermobility. I noticed in another thread Rasputina said she has excess swelling from insect bites, as I do, which is a symptom of an excessive histamine response.

        An MTHFR polymorphism would also explain my vunerability to mercury poisoning... and various familial diseases. I need to research this further, maybe get a genetic test done. I doubt the NHS would fund one while I'm well enough to work.
        F 5 ft 3. HW: 196 lbs. Primal SW (May 2011): 182 lbs (42% BF)... W June '12: 160 lbs (29% BF) (UK size 12, US size 8). GW: ~24% BF - have ditched the scales til I fit into a pair of UK size 10 bootcut jeans. Currently aligning towards 'The Perfect Health Diet' having swapped some fat for potatoes.

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        • #19
          Hi there,

          I also am a sufferer from Ehlers-Danlos; it was never that big an issue until lately the years are counting! Now I am 40 years old and have always suffered from neck- and back pains. Tried tons of therapies and painkillers until I was finally diagnosed with Ehlers-Danlos and found a therapist that had that as her specialty! She told me that the most important thing is to strengthen the muscles without straining the joints. For this I now follow "bugnet therapy" and it does wonders! Thing is it makes me feel muscels I have never even known to have! For now this does rule out some other things; I am not allowed to use my crosstrainer, I am also not allowed at this point to have any fun with my kettlebells, I really need to take it slowly.

          My advice to you: Find a Bugnet therapist, it will do you so much good!

          Kind regards,
          Paleo_Mama
          Last edited by Paleo_Mama; 06-19-2012, 05:11 AM.

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          • #20
            Hello,

            I'm excited to find this thread as I also have EDS Hypermobility Type (HEDS), with secondary autonomic dysfunction (PoTS, more specifically). My joint laxity is very widespread. For exercise I walk, swim and do pilates and have started to Lift Heavy Things. I'd love to be able to start dancing again, but fatigue and low stamina in particular makes that really difficult.

            For a few weeks I've been doing the Four Essential Movements as outlined in the Primal Blueprint Fitness e-book for lifting heavy things and so far it's going fine, other than that the push-ups seem to be causing wrist pain, possibly because they're causing muscle sprain/strain. I'm doing stage one of the push ups (ie the ones against the wall). If anyone has any advice on how to avoid this problem, it would be much appreciated. I thought that it could be worth trying wrist supports as my wrist joints are lax and probably unstable. I might try a different stage of push-ups to see if that works better for my wrists for some reason. Does anyone know of any alternatives to the push-up that I could substitute if the wrist problems continue? Tess, I read you post mentioning pull and push ups with great interest and I'll bear what you say in mind; if I don't progress past the double leg assisted pull up stage, I won't give myself a hard time.

            My general rule is to listen to my body carefully and work on the basis that if exercise doesn't cause me any problematic HEDS symptoms, it's probably OK, but I could be wrong.

            Wishing all the EDSers out there the best possible health.

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            • #21
              I'm hypermobile - pretty floppy joints, especially ankles and I can do the thumb on the forearm thing too. Thankfully I dont' seem to have had many of the other symptoms - in the past I've been very prone to ankle sprains and my knees are a little dodgy. I do find, though, that it's worse when I'm heavier and improves with fitness.

              I do some running - and have found that it has actually strengthened my ankles and weight training has helped enormously with my knees....I do yoga too. Obviously I find some yoga poses ridiculously easy, but the counterposes impossible so I like yoga for trying to balance things a little - whether that's good or bad, I don't know.

              I'm guessing I'm lucky - it can be a bit of a pain in the butt but doesn't cause me any serious problems.

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              • #22
                No diagnosis, only mild symptoms.
                My hips, fingers and knees are way too flexible. I could bend my knees the wrong way as a kid and walk like a chicken. And my fingers bend most of the way backward in a curve. But I have a lucky ace in the hole. I have a hyper-aware brain (call it ADHD, autism, I don't care what you call it. I feel every wrinkle in my clothes all day long) so I've had no serious problems. My gait is always over-thought and conscious. I figured out in my teens that having my toes pointed out was probably hurting my knees. Within two weeks I had retrained my feet to point perfectly forward with every step. Knee pain greatly reduced after that. So I guess I'm unlucky enough to - SQUIRREL!!! - but lucky enough to - ow, that hurt, I can stop doing that. It's self-limiting thanks to my hyper-awareness.
                Crohn's, doing SCD

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                • #23
                  My hand function has suffered a lot due to a decline in proprioception. I sprain my fingers frequently.
                  F 5 ft 3. HW: 196 lbs. Primal SW (May 2011): 182 lbs (42% BF)... W June '12: 160 lbs (29% BF) (UK size 12, US size 8). GW: ~24% BF - have ditched the scales til I fit into a pair of UK size 10 bootcut jeans. Currently aligning towards 'The Perfect Health Diet' having swapped some fat for potatoes.

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