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Anyone else here with hypermobility syndrome/ Ehler-Danlos?

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  • Anyone else here with hypermobility syndrome/ Ehler-Danlos?

    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, 11:08 AM.
    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

  • #2
    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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    • #3
      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, 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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      • #4
        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

        "Discipline is choosing between what you want NOW, and what you want MOST!"

        Comment


        • #5
          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.

          Comment


          • #6
            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!

            Comment


            • #7
              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.

              Comment


              • #8
                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.
                My Primal Journal: http://www.marksdailyapple.com/forum/thread51432.html

                Comment


                • #9
                  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.
                  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.

                  Comment


                  • #10
                    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, 10:45 AM. Reason: Spelling
                    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.

                    Comment


                    • #11
                      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.
                      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.

                      Comment


                      • #12
                        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.

                        Comment


                        • #13
                          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.

                          Comment


                          • #14
                            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, 11:26 AM.
                            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

                            Comment


                            • #15
                              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

                              Comment

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