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

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    Horsewoman's Avatar
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    Anyone else here with hypermobility syndrome/ Ehler-Danlos?

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    Hi, I've recently been diagnosed with some form of hypermobility syndrome (not sure exactly what yet, am still in the process). Waiting for follow up appointments and a physio referral is taking forever and I am not feeling very patient! I've got into a vicious cycle of worsening symptoms, increasing inactivity, injuries that take months to heal, weight gain, weaker muscles... you get the idea. Joint pain and fatigue is having a nasty amount of impact on my quality of life right now. I have plantar fasciitis which I have tried pretty much everything for, so am limited in how much I can be on my feet.

    I just wondered if anyone else here had HMS or knows anything about what I can do to strengthen my muscles so they can support my joints better, and rebuild my fitness without injuring myself. I've just had to give up working and I don't have funds for any private help like a chiro or massages.

    Any advice very welcome.

    (Just to add, my siggy says I have AS but I don't, HMS is my new diagnosis)
    Last edited by Horsewoman; 02-25-2012 at 10:08 AM.
    Gluten intolerance and hypermobility syndrome http://www.cfids.org/pdf/joint-hypermobility-guide.pdf

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    Hi HW, my 10 year has, I think. She suffers frequently from sprained ankles, twisted knees and dietary problems. Trying to persuade my (non paleo) Mrs. To put her on a Primal regime for a couple of weeks but it's tough. I'm at the stage of gathering information at the moment so it's early says for us yet.

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    Yes, I have HMS. I can touch the inner side of my forearm with my thumb with ease and could lean forward and touch my hands flat on the ground when I was obese LOL! When I used to run, my knees hyperextended very significantly.

    Just today, I've been referred to my GP for high intraocular pressure by my optometrist, even though I show no detectable signs of loss of peripheral vision yet. Apparently glaucoma can also be caused by abnormalities in collagen, which links back to hypermobility. My Mum and her only sibling and my maternal grandfather all have glaucoma. My Grandad has tunnel vision due it being caught quite late. Still he's done quite well to live to 89. One of his brothers lost the sight in one eye due to glaucoma.
    Last edited by paleo-bunny; 03-17-2012 at 11:37 AM. Reason: clarification
    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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    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.
    5'6" Female, 29 Years Old, 260/195/120

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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 of the syndrome yet then you probably have nothing to worry about. There are lots of different factors involved in causing hypermobility so everyone's different.

    I have to avoid running as it makes my knees hyperextend. Also some yoga poses are out because they weaken my ligaments.

    Horsewoman, I have quite a lot of the symptoms listed in the article linked in your sig. These are IBS, gluten intolerance, chronic insomnia as a child, autonomic dysfunction, low blood pressure, weak neck muscles, tennis elbow, weak ankles (they cave in after about 30 minutes of ice-skating), clicky jaw, pain when I apply pressure to the common fibromyalgia points, interstitial cystitis (seems to be linked to phytic acid intake).

    I think the advice in the article is good, regarding suitable forms of exercise. I used to swim but as my skin is very sensitive to chlorine I've had to give that up. My main forms of exercise are walking, and using a cross-trainer and exercise bike at the gym. I also do strength building on resistance machines and with dumbbells and various exercises on a mat. Plus I do fitness hula-hooping which has strengthened my core. Isolation exercises are the best for avoiding damage to ligaments and tendons - whole body exercises e.g. burpees, kettlebells, playing sports, running, complex dance are really not suitable for us. My advice is to put together your own programme with what feels right for you, and build it up slowly.

    I think you would benefit from pilates as that strengthens the core, which helps prevent injuries. Perhaps buy a book or DVD rather than shelling out a fortune on classes, or perhaps you can find instruction online. I'm sorry you've had to quit your job - I missed that when I first read your post.
    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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    I would say, horsewoman, that you need to get to a yoga teacher or pilates instructor who is a specialist (your physio might be able to recommend someone).

    A lot of teachers focus on flexibility, rather than strength -- and as such, people who are hypermobile or have your syndrome (or any weakened areas in tendons and ligament are particularly at risk with them. But a teacher who focuses on strength is a good option.

    With special needs, I would not practice with a book or DVD alone. Definitely fine for inbetween lessons, but get lessons. It makes a huge difference.

    Ask family members to give it to your for your birthday, or ask the yoga teacher if s/he will trade. I trade lots of things in exchange for yoga. right now, i'm exchanging ukulele lessons, child care, cleaning of the studio, assistance with my administrative duties with the business, and so on. I've even traded gardening, construction projects, and other odds-and-ends that I needed for yoga.

    I'm sure you have something to trade, and hopefully, the teacher will work with you. good luck with it!

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    paleo-bunny's Avatar
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    Quote Originally Posted by zoebird View Post
    I would say, horsewoman, that you need to get to a yoga teacher or pilates instructor who is a specialist (your physio might be able to recommend someone).

    A lot of teachers focus on flexibility, rather than strength -- and as such, people who are hypermobile or have your syndrome (or any weakened areas in tendons and ligament are particularly at risk with them. But a teacher who focuses on strength is a good option.

    With special needs, I would not practice with a book or DVD alone. Definitely fine for inbetween lessons, but get lessons. It makes a huge difference.

    Ask family members to give it to your for your birthday, or ask the yoga teacher if s/he will trade. I trade lots of things in exchange for yoga. right now, i'm exchanging ukulele lessons, child care, cleaning of the studio, assistance with my administrative duties with the business, and so on. I've even traded gardening, construction projects, and other odds-and-ends that I needed for yoga.

    I'm sure you have something to trade, and hopefully, the teacher will work with you. good luck with it!
    Having done both, I recommend pilates over yoga. The pilates class I took focused purely on building core strength because it was a beginners' class. I found it extremely boring compared to yoga, but very effective.
    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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    I have EDS, and so does my son. His manifestations are worse than mine (since EDS "breeds true" I suspect his father has it too, but he always refused testing.) I wish I had advice on how Primal affects this, but I haven't been following this long enough to say. I am a certified personal trainer through ACE, though, and have experience with how hypermobility and the cartilage issues of EDS affect exercising.

    Strength training is fantastic, as the muscles can be built up to supply the support ligaments and tendons usually give. But you have to use strict attention to form and progress slowly. Allow plenty of time for recovery, more than the usual one day between workouts. Kettlebells *can* be used, but especially for EDS folks, they aren't a learn-on-your-own thing. Much as it pains the pocket, if you want to use these great fitness tools, get qualified instruction from an RKC or other nationally recognized kettlebell instructor.

    If you're flat-footed, or have serious ankle pronation problems, you may want to be cautious about the bare-foot part of all this. That advice is for people with anatomically correct feet. I have flat feet, and have "built" a slight arch just by making it a habit to hold my feet correctly until the muscles developed to keep the arched position-- but my son's ankles are so weak that, without shoes and orthopedic inserts, the insides of his ankles literally touch the floor. This is even after a barefoot infancy/toddlerhood and childhood physical therapy to try to correct the severe pronation. For us, supportive shoes may be a compromise between our weird anatomy and our Primal ideals.

    Be careful with pull ups and push ups and don't beat yourself up if you have extreme difficulty doing them. We're so stretchy, it's hard to hold the shoulders rigidly enough to properly supply the force to do these essential moves. Look up "packing the shoulder" and apply this and the usual form pointers religiously.

    The following is just personal anecdote, so take it for what it's worth. With EDS, the valves in the heart can be effected. I have a bum mitral valve due to rupture of the chordae tendineae, or heart strings, that fasten the valve to the heart muscle. My cardiologist suspects this happened due to my program of sprinting a few years ago, and I tend to agree because my heart problem had such an abrupt onset. YMMV on this, and this is just one Dr's theory.

    Basically, just move, move, move and do weight-training at your own speed and progression pace. Exercise really does help, even when you're fibro-achey all over. Just don't go nuts with it-- and get a good cardio workup if you're diagnosed with EDS before getting aggro with the sprints. Just in case. ;-) Oh, and don't do weirdo bendy stuff as party tricks. Bendy now is arthritis or spontaneous dislocations later. Trust me on this.

    As for how Primal eating can affect this disorder, well, sadly it's a genetic coding defect so it won't fix it-- but I'm SURE it will make it easier to live with. Gut mobility is definitely better even after my short time with the program. My fibromyalgia-like symptoms (I'm a frakin' barometer) have also resolved during this short period on the diet. Reflux is no more as well. For those things alone, this way of eating/exercising is well worth the effort. I have no way of knowing this, but I can't help but suspect that the superb nutrition of this approach would help with the difficult wound healing and disordered scarring issues EDS people experience.

    If you have jaw clicking, you may want to try a $20 jawline exerciser that's sold in those 'as seen on TV' sections. I had jaw clicking and locking, and started using one of those gizmos. Can't say it's done much for my nascent wattle, but it did relieve the jaw misalignment issue.

    This is just my take on dealing with this disorder in myself and in my son. There's an excellent source of information on EDS of all types and benign hypermobility at ednf.org.

    Wishing you better health, and all the best on getting proper diagnosis and treatment.

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    Seeing the responses to this question motivated me to create an account and I will state clearly that SOME PEOPLE ARE NOT GIVING GOOD ADVICE. Please, please, please do your own research before you take into account some of the suggestions here as well as your own body or you will hurt yourself.

    I have EDS Type III as well as POTS, and have just started following the PB, so I cannot tell you how the new diet has affected me yet, BUT:

    First and foremost, hypermobility is NOT A PARTY trick, and it is offensive and harmful to say that it is. The chronic pain that plagues many people with EDS or hypermobile joints ruins lives, and those "party tricks" encourage others to view this condition, my condition that I have battled my entire life, as harmless fun. It isn't harmless. Continually hyperextending our super bendy joints injures us over time and leaves people wheelchair bound and in more pain than most people will ever know for Every. Single. Second. Of. Every. Single. Day.

    Secondly, talk to a medical practitioner before you start Pilates or Yoga. I have been told over and over again that both of these things are TERRIBLE for EDSers because they encourage you to stretch your muscles when we need our muscles to be as tight as possible in order to compensate for the laxity of our ligaments. If you have had success, or your pain level is manageable, do it. I wouldn't recommend it, and I think it is bad for you in the long run.

    I am glad that people took the time to respond to your question even though they themselves may not have much knowledge of what can be, and is often, a debilitating condition, but I would like to caution everybody (myself included) against offering advice without sufficient experience or knowledge, because that advice may do more harm than good.

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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.
    GrokON, looking at your other posts I fell that you have enormously good intentions and are truly passionate about this lifestyle, and I salute you.

    I would like, however, to take this opportunity to educate you about EDS and hypermobility in the hopes that you will recant or apologize for what I feel is a blase and disrespectful comment about a very serious condition.

    As an active, previously-whole-food-eater-turned-Paleo, Junior in college with EDS Type III, also known Hypermobility Type, I think the attitude you expressed here towards EDS and joint hypermobility is one of the huge reasons that people are dismissive and do not understand how hypermobility could, has, and will cause me to roll over at night, crunch a shoulder to my chin, and wake up crying, or take a step and have my ankle dislocate, or breathe too deeply and feel a pain in my ribs that makes me loose my feet. This, and more, has been my life from my earliest memories, around ages 3 and 4, until now, at 20 years old. People have requested these "party tricks" more times than I can count when I try to explain my condition, and these "party tricks" only serve to damage the joints more while desensitizing others to a very real, very serious medical condition.

    I would encourage you to visit www.endf.org or the hyperlink below in order to learn more and maybe educate someone else on how EDS and hypermobility can affect every facet of a person's, or child's, life.
    http://www.ednf.org/index.php?option...temid=88888969

    While I am not trying to attack or offend you, GrokON, I do think that your response to the OP's post was inappropriate and unintentionally cruel.
    Last edited by KKDMB; 04-05-2012 at 10:45 AM. Reason: Spelling

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