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Thread: Anyone else here with hypermobility syndrome/ Ehler-Danlos? page 2

  1. #11
    KKDMB's Avatar
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    Goodness gracious, as a prattle on, I would like to let you know what exercises I have been able to do that have helped me:

    Swimming - with too much repetition, my shoulders click and start to get too loose and inflamed, and I can only do crawl and backstroke. The breaststroke kicks causes my patellas to sublux. If your wrists get tired like mine do after a while, get a kick board! If your legs hurt, get a pull bouy. (Gyms/pools typically keep kick boards and pull bouys around for general use)

    Elliptica/Stair Climber - yay for circular motions! Great cardio, but it can be hard on the knees and hips. Always stop if you feel burning/pain in your joints apart from normal muscular pain during exertion.

    Stationary bikes - I can sit up, slouch, scoot around, and change positions while biking with those EDS-loved circular motions.

    Walking - Always good, unless your hips/knees/ankles/toes are too inflamed. In which case, go tread some water, or do some laps with or without a pull bouy.

    Calisthenics - not sure if this is the right word for this, but this is all the do-at-home stuff, like push ups, squats, lunges, etc.

    That's...pretty much it. No impact, nothing too repetitive. This is certainly not a one-size-fits-all guide for exercise with hypermobility, but those are great places to start.

    Medicine and Bosu balls are great, because they emphasize stability and balance over movement. Pretty much anything that makes you stronger and doesn't hurt your joints is good. When/if it hurts, stop. Period. Don't do anything that makes your joints click, either. For example, when doing push ups I only bend my elbows to about 100-110 degrees because dipping any lower makes my wrists pop. This leads me to another point, which is to concentrate on your range of motion. Just because you CAN go all the way down and score a 9/9 on the Beighton Scale doesn't mean you should. Actually, you should do the opposite and keep those muscles nice and tight!

    In summary:

    1. Do what works for you. If you can handle light jogging and impact does not bother you yet (or maybe never will if you're fortunate), then do it. If it causes agony, try an elliptical, and if that doesn't work, tread water. Avoid stretching, hyperextending, and impact, but above all: listen to your body. It will let you know.

  2. #12
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    I agree with KKDMB on some cautioning against stretching, yoga, or the wrong palates exercises. Heck, I don't recommend static stretches for anyone. But, in cases like this could be especially harmful.

    Also agree with Tess's comment. Strength training would be a good idea. If you are doing resistance training I would also recommend avoiding the extremes of the exercises ROM. Check out this book Amazon.com: Congruent Exercise: How To Make Weight Training Easier On Your Joints (9781467930413): Bill DeSimone: Books

    Or just look up his info online. Lots of good advise on making strength training safer for the joints.

  3. #13
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    I do the isolation exercises on resistance machines and with dumbells that are so frowned upon by PB.

    However, I have made progress on these ... in that I can do 10 quasi-push ups now. I can't drop all the way to the ground and back up again, but I can drop halfway down and raise back up again. This is serious progress for me.
    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.

  4. #14
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    Thanks, that's brilliant, loads of info .

    I can't do anything that involves paying for classes etc, unfortunately, so am at the mercy of the NHS and what I can learn myself. Trading is a nice idea, but I am barely coping with rudimentary housework and looking after my 4 kids, plus supporting my terminally ill sister, I really have nothing to spare. Birthday is an option, but I only have 20 pounds spending money a month so not sure I want to give my 60 quid birthday budget to this, probably wrong priorities but what can I say, I like books and music lol.

    I did a year of iyengar yoga, wondered why I was feeling worse and my body didn't seem to be improving, after getting my diagnosis I now understand why it didn't suit me.

    Party tricks- I'm not really bendy enough for those anyway, except for my weird toe lol but I keep that one to myself!

    I am now on the waiting list for physio but who knows how long it'll be. I am feeling a bit wary of it though, as my best friend was diagnosed after I was (she went to the doc after I told her about my diagnosis), she has already started physio, she had one session and her calf was aching, a few days later she went to run after one of her kids and tore her calf muscle, yikes! Also, another friend has a daughter who has it, and they have found the NHS physio useless, she has gone as far as borrowing money to pay for physio and a consultation with the specialist in London because the services locally have been so useless. She said the local rheumatogist is totally ignorant about HMS, well I haven't even been referred anyway, my joints are not as bad as her daughters, as for help with the other symptoms, I tried to talk about them by saying I had read up on it and found it explains a lot of other symptoms I have that are non-joint related. The doctor, instead of asking me about that, nodded and smiled and changed the subject. I am learning that this is normal with HMS, and there was me thinking after 16 yrs of struggling whilst undiagnosed (I was told it was depression when I went to the doctor before), now I would get help and be taken seriously!

    I have been looking back to what I was doing when I felt best. Definately some weight training, the primal movements aren't so good for me I think, it is better to do more isolated movements so I can be really careful. I have all the weights and stuff from before so can start that up again IF I can find the energy. I am feeling a bit stuck as the fatigue is so bad I can't find the energy to do the things I need to do to feel better. I was doing walks, cycling and swimming, I guess variety helps. Unfortunately no money for swimming and I don't have a bike any more so those are out for now (v frustrating how lack of money seems to arse up everything!).

    I had an orthotics appointment last week, and have had molds taken for custom orthotics. Not what I'd ideally want to do but if it helps the foot pain so I can walk more, it'll be worth it (hikes on the moors with my new dog, yes please!). He said my feet are rolling in and putting strain on my joints, so it'll help my ankles, knees and hips as well, fingers crossed.

    Primal eating definately helps, especially avoiding the foods that really bother me (gluten and corn, and ideally dairy). Less pain, better digestion, less reflux and so on. I have reintroduced rice, as low carb was wiping out the energy I have, even after 18mo, but otherwise am trying to stick with it, but finding it hard, I feel so exhausted a lot of the time it is torture just being awake and it's hard to enjoy anything, most things need activity or concentration, so I do tend to eat chocolate more often than I should!

    I definately have had a lot less joint pain since I got diagnosed- I immediately stopped all stretching including yoga and the Katy Bowman "when it hurts all over" DVD I had been doing.
    Last edited by Horsewoman; 05-06-2012 at 12:26 PM.
    Gluten intolerance and hypermobility syndrome http://www.cfids.org/pdf/joint-hypermobility-guide.pdf

    Eat food. Mostly real. Enjoy life.

    Health, energy, wellbeing, vitality, joy, LIFE! Health At Every Size

    "Do not ask what the world needs; ask yourself what makes you come alive. And then go and do that, because what the world needs is people who have come alive."
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  5. #15
    Horsewoman's Avatar
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    Quote Originally Posted by GrokON View Post
    Heh. This is a syndrome?! I always considered it a series of party tricks.

    Bottom line: Do I even have to bother reading up on this given that I am strictly anti-inflammatory, primal, moderate carb? I take an Omega 3 supplement as well, which I know is good for arthritis among other things.
    If you don't have symptoms, don't read up on it, no point worrying. But skip the party tricks, you might pay for them with joint problems later.
    Gluten intolerance and hypermobility syndrome http://www.cfids.org/pdf/joint-hypermobility-guide.pdf

    Eat food. Mostly real. Enjoy life.

    Health, energy, wellbeing, vitality, joy, LIFE! Health At Every Size

    "Do not ask what the world needs; ask yourself what makes you come alive. And then go and do that, because what the world needs is people who have come alive."
    Harold Whitman

  6. #16
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    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?

  7. #17
    KKDMB's Avatar
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    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!

  8. #18
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    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.

  9. #19
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    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 at 06:11 AM.

  10. #20
    Ello's Avatar
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    Primal Blueprint Expert Certification
    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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