Hyperflexibility Strikes Again

At first hyperflexibility (aka being double-jointed) may sound like a good thing. Or, for some people, it must sound like a sexual thing, because I've gotten quite a few inappropriate leers or comments if I happen to mention being hyperflexible. (Seriously, if that's where your mind went: Not everything is about sex!)

But as I keep finding out, hyperflexibility is bad. Very bad. A few years back, a rheumatologist was looking into my chronic joint pain and decided that my joints simply get sore and inflamed because they bend way too much. Now it turns out my feet are also hyperflexible and it's causing a slew of problems.

That's right, I had my first physical therapy appointment yesterday to start dealing with the stress fractures in my feet. And yes, that's feet, plural, my right foot hurts much more but both have the same problems.

As soon as my physical therapist watched me walk, she asked, "Are you very flexible?" Uh oh. I'd heard this before... Then, while examining my feet, she kept twisting and turning them and commenting on how far they bent in every direction. (We had a few laughs over my near-circus-freak bendability--she's super nice!)

It may be odd - considering that I already knew I'm hyperflexible in pretty much all of my other joints - but I'd never considered that the joints in my feet could be hyperflexible. I don't really think about my feet at all because they're just.... well, feet.

The solution is to relearn how to walk, because my feet have been doing it wrong for 30-some years. In a nutshell, the joints in my feet are so flexible that the muscles are working overtime to keep them stable. The wrong foot muscles have overdeveloped in an effort to compensate, leaving the muscles that should be doing the job to slack off.

As a result of all this, the weight isn't distributed properly in my feet, they don't step properly, and my entire gait is a mess. My hyperflexible knees and hips might be contributing as well, so they are going to get some attention too.

It looks like I'll be in PT for at least six weeks, possibly with some maintenance appointments after that. In the meantime, no weight bearing exercise and stay off my feet as much as possible so the stress fractures can heal.

I did find out that I can use a stationary bike for cardio though, so hopefully I won't turn into an entire puddle of goo while I'm recuperating!

27 comments:

  1. I TOO HAVE JUST BEEN TOLD IM HYPERFLEXIBLE, ALL THE FAMILY USED TO HAVE A GOOD LAUGH WHEN I WAS YOUNG ABOUT HOW I USED TO SIT WITH LEGS SPLAYED. NOW IM A COP, MARRIED WITH 2 KIDS AND THINGS ARE NOT QUITE SO FUNNY FOR ME. AFTER HAVING SECOND DAUGHTER 3 YEARS AGO IVE BEEN IN NEARLY CONSTANT PAIN WITH MY BACK. 8 PHYSIOS, ONE CHIROPRACTER, AN MRI SCAN AND A STAY IN A REHAB FACILITY, FINALLY DIAGNOSED THE PROBLEM OF HYPERFLEXIBILITY. ALTHOUGH BY THIS TIME IM ALSO HAVING PROBLEMS WITH MY KNEE AND FEET TOO. IVE BEEN TOLD PILATES AND SWIMMING ARE THE MAIN EXERCISES TO TO BUT VERY HARD TO DO WHEN YOU ARE SOOOOO SORE YOU CANT GET YOUR PANTS ON IN THE MORNING!! ALL I CAN DO IS PERSEVERE WITH THE EXERCISE PROGRAM AND SEE HOW IT GOES BUT THINK THE DAYS OF ME BEING BACK ON THE BEAT COULD BE LONG GONE.

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  2. Allison, sorry to hear you're having such a hard time. I was also recommended swimming and pilates. I'm not interested in swimming, but I've really gotten into the pilates and it, combined with the PT exercises, has helped me a lot.

    From what I've learned, it's a matter of building up the correct muscles to support the joints. I also get morning soreness/stiffness through my legs, back, etc. and I've been told that is probably something called dural tension. Basically, my nerves aren't as flexible as my joints and muscles and they tighten up overnight. I now do simple "nerve glide" stretches in the morning and it feels much better. Nerves can be aggravated by static stretches, so learning to do nerve glides let them gently stretch out. But you have to be careful not to overstretch with the glides or it makes it worse!

    I can't say that any of my experiences would help you. But maybe it will give you some ideas of questions to ask your doc. Hang in there with your PT and I hope it gets better!

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  3. Dear Susan,
    I have recently been told that I am also hyperflexible, although so far I have not had any issues with my feet. My problems have centered on my knee, back and shoulder (all the right side funnily enough). I have also found out that my knee responds quite strongly when my glutes are being worked on (apparently they are connected ?). I have also been told to go do strengthening exercises for my joints and to take vitamins for them (this is after seeing 5 different doctors and still being in pain on a very regular basis). I was intrigued by your mention of "nerve glide" exercises. Could you tell me how to do these ? I am pretty much willing to try anything at this point as even the strongest anti-inflammatories and numerous stretches have not helped much.

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  4. Hello,
    I've been hyperflexible my entire life, but it wasn't until I started learning about connective tissue diseases that I realized hyperflexibility could be a bad thing. I haven't seen my own doctor yet. I am a little concerned that I had such HUGE deep stretch marks from my pregnancy with my son.

    One question and one suggestion:
    Were you worried about connective tissue diseases? Many can cause aortic dissection!
    My suggestion for knee and hip pain: boots with heels. I know it sounds crazy, but when I was pregnant my hyperflexibilty was out of control. High heeled boots were the only shoes I could tolerate. They are less flexible than normal shoes, so your foot is forced to walk correctly, and the angle of the heel force your gait to be straighter.

    Thanks,
    Melissa

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  5. I have had ankle problems for years (which is saying something because I am only 20 years old). I would sprain my ankles at least twice a month, which was causing back problems, knee problems, hip problems...I am basicly a mess. After a pretty tramatic fall down the stairs at a sports staduim I was recomended for ankle reconstruction surgery because I can invert my ankles 60 degrees (normal is 30). After surgery my doctor asked me to do some streching and flexablity so he could observe. This is when I found out I have hyperflexablity!

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  6. It was nice reading that I am not the only wierdo. I was not diagnosed until I was 20. I was tormented by my PE teacher in school as a child. She claimed I was being lazy and that is why I am fat and that makes me lazy and saying the horrible pain from running was just an excuse to stay lazy! Growing up friends would point out wow Sarah I cannot do that with my elbow or jaw or ankle. I never put it together. I have a file cabinet of my own full of ankle injuries ranging from cracked growth plates, sprains, fractures, spiral fractures, breaks to both ankles/legs. I remember running sometimes and it would feel as though I had a blowtorch on my ankles because they would pinch nerves in my ankles from popping in and out of place. I cannot believe that the doctor I ahd never mentioned how odd it was to have the same child every year almost multiple times a year sometimes... I had to go to the military hospital at age 20 and say figure out what is wrong. The ER doctor could not even tell if I had an injury because i have so many old injurues. i am so used to arthritis I accidently walked on a sprain for months causing some bad damage to my right ankle. My worst joints are my ankles but I was told it is pretty much through out my entire body from doing this flexibilty test and I got a 10 out of 10 score. MY PT said he has never seen a person so flexible in his life. I guess Now I am just looking for more information because I ahve a daughter and I dont know if she could get it because I have it... If so what are things i NEED to look for in order to catch it early and help her avoid the problems I face at age 20 because no one looked into it for me as a child.

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  7. I have always been hyperflexible, and I had an issue when I was a teen with my knee that it would lock/patella would catch connective tissue and it was absolutely the most painful thing. That was the first instance that I realized it could be a bad thing. However, I can tell you that by strengthening muscles, the condition is so much better. I now am a kickboxer and do the kettlebell, and for me this has helped tremendously. My coach realizes that my hyperflexibility can be a dangerous thing (I almost really hurt my knee a few weeks ago) so we work on exercises to strengthen all those areas. All I can say that for me, exercise is key!

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  8. Thanks for starting out on a completely sexist note. I'm surprised that, as a man, I could actually read two sentences without thinking about boobies or when I'm getting laid next! Because, let's face it, as a guy I can't think about hyper-flexibility in a sports context even though that's what I googled to get here.

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  9. Chris, I'm sorry that my tongue in cheek opening offended you. I know that not all men turn hyperflexibility into sexual innuendo. At the time I wrote this I was rather frustrated with how many men had made uncomfortable, insinuating "jokes" when I was simply trying to talk about a painful and upsetting injury.

    If you were a woman who'd had the experiences I've had, you would probably better understand my frustration. However, I may reword that bit to not blame "all" men for the immature reactions of some. (I probably won't remove it completely, because--unfortunately--that is a reaction I've encountered frequently.)

    Please also keep in mind that this is a blog entry, venting personal frustration over an injury, not a serious, medical article about hyperflexibility. I hope you find the information you're looking for elsewhere.

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  10. I can sympathize with your frustration at many of my gender who turn everything into a sexual "joke". My fiancée is a bartender and it seems nearly every day she comes home with another story of some drunk jackass who feels it necessary to verbally violate the staff.

    I also understand that this is a blog. I too have similar issues with my hyper-mobility and am looking to see what others have done for it. I didn't criticize the opening because it's not up to par with a Medical Journal entry, but because nobody likes to be pigeon-holed. I'm sure if you came across a blog post that was overtly racist/sexist/bigoted you may say something as well.

    And I don't mind jokes, just as long as they are funny. I would have laughed if you had said something along the lines of, "and for those men who googled 'hyper-flexible women', you won't find any porn here". I don't know, not my best work, but it raises the issue without making us all sound like drooling horn-dogs.

    Just my 2 cents. I appreciate your apology, and can appreciate the context in which it was written. Maybe I'm oversensitive what with basically every sitcom and TV commercial using this (among other) stereotypes. I don't think I was offended as much as defensive, but maybe they are the same thing.

    Or maybe my gender is completely made up of horn-dogs and I'm just in denial. =)

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  11. I totally see your point, Chris, and I appreciate you calling me on it. Like I said, I was frustrated when I first wrote this post, but that doesn't make it okay to lump all men in with the ones I was annoyed by.

    I should know better, since my husband doesn't fit most male stereotypes (he especially hates the commercials where men can't cook or clean without their wives--so do I).

    I rephrased the first line to use inclusive language, because after I thought about it, I realized that it actually wasn't just men who trotted out the sex jokes. (and it's annoying from both sexes, especially when you're in pain and worried about how to feel better.)

    Anyway, thanks for dropping by, and I do hope you find the information you're looking for. This hyper-flexibility stuff is a huge pain!

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  12. My hyper-flexibility became an issue a couple years ago after a battery of tests (to rule out things like Lupus & Arthritis). I wasn't surprised with the diagnosis. I too was called double-jointed because of my crazy flexibility (and yes, I too got the sexual remarks all the time).

    My biggest frustration is other people. One day I was having trouble walking at church. A woman inquired about my trouble. When I explained I had hyper-flexibility (& what it was) she rolled her eyes & said she's flexible too & doesn't have any problems.

    Because we don't look horrible it is assumed it's all in our heads. For this reason I push myself too hard so I don't have to deal with other people. The problem with this method is the risk of breaking a joint.

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  13. Kelly, I have the same trouble with people not understanding. The older I get the more my joints ache (though I'm only 35) and I frequently have sports-related injuries which trace back to hyper-flexibility. But people think it sounds silly or frivolous somehow. Very frustrating.

    Add in my limited diet due to food allergies, and it's pretty easy to feel like a circus freak. But that's just the way my body works, so I do what I have to do and try not to let others get me down.

    By the way, building muscle and doing PT does help! My feet are much better now, and I'm currently working through a bout of Runner's Knee with knee stabilization exercises and building up my glutes.

    I'm finding that a vigorous ashtanga yoga class is good for all over body strength--as long as I'm careful not to overextend and strive more for strength/balance over stretching into the more flexible poses before my muscles are stable. :-)

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  14. It's refreshing (in a sad way) to hear about people who have the same issues as me having a hard time dealing with the "normal" people out there. Being a reasonably fit guy means I get the stink eye every time my fiancee is pushing the loaded shopping cart, or there's people lifting heavy stuff and I don't volunteer to help. Or the worst: when I have the audacity to ask for help loading stuff in my car! Then when you say "My shoulder is completely jacked and I'm not supposed to do any heavy lifting/pushing, doctors orders" there's always some backhanded comment that makes me feel inadequate, like "it doesn't look like you have anything wrong with you".

    I guess the best us folks can do is carry around a pre-printed page that explains what's going on that's signed by our Docs/PTs so we can avoid having to justify our choices.

    (By the way, sorry for bursting on to your blog the way I did, but if it's alright with you I'd like to join the discussion. I appreciate your apology and the fact that you actually discussed the prior issue with me instead of just calling me an ignorant jerk and blocking me [which has happened before].)

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  15. Hi, I have a 10 year old daughter who has the same problem. She has been seeing a physiotherapist for 6 months now. I have been told that because of the hypoflexibility hadn't been spotted when she was small it has now become a longer process to try to correct as she has had to retrain her body to walk properly again. I always noticed that she would always fall over things, even falling oven when there was nothing there, and doctors would brush me off with it was kids being kids, however when I spoke to the physio, she informed me that these early signs of the hypoflexibility. When I said I had another daughter with the same signs, she told me that if one child has it the other child may get it too. The reason for the falling over is that the body has become unbalanced as they find another way to walk which is comfortable to them, but it causes further problems with the core muscles, back knees and feet, it also happens when people are flat footed too.
    My daughter also has a tendency of when she falls she always hurts her joints, it always ends up as a trip to the hospital, and always turns out to be tendon damage. I have since learned the reason for this from the physio, and that is when she falls she protects herself to prevent the hurt, but they stiffen themselves up and the shock form the impact of the fall will go into the joint and muscle causing more damage, than a normal persons fall.
    I find that exercise has helped, but it is very difficult to get a stroppy 10 year old to do them all the time, but we try!!!.
    I hope in sharing this information, people will get a better insight to this condition.
    Christine

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  16. So glad I found this page! I'm due to set out on my gold Duke of Edinburgh expedition tomorrow, [i'm female, aged 16] and was trying to find out more information on hyperflexible feet as last time I visited the chiropodists 5 weeks or so ago, my podiatrist casually dropped in the fact that I have seriously hyperflexible feet and it takes my muscle another 30 percent more to get to the standard of any averaged footed person. Any advice on what to do if pains in my feet begin mid expedition??

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  17. Christine,

    Kudos to you for getting your daughter diagnosed so young. She might not see the importance of the exercises yet, but she'll be better prepared as she gets older!

    My son is flat-footed and has balance trouble, too. After multiple twisted ankles, we've finally gotten him into much better shoes and are looking into supportive insoles. But the shoes alone have made a big difference!

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  18. Anonymous Expeditioner (Sorry, don't know your name),

    I'm not sure if this would help mid-expedition, but I keep a frozen water bottle to roll under my feet after a run. Just step on it (in socks, no shoes) and roll it back and forth under the arch. Then stretch or rub your feet to loosen up tight muscles.

    Otherwise, I'd say supportive shoes, warm up gradually and stretch often. Good luck! :-)

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  19. I used to suffer from serious knee pain as a child whenever I had to do any running or jumping in school. Doctors always informed my parents that the problem was all in my head!

    The issues continued into adulthood and after hurting my back at work, I suffered from chronic pain plus pain in my hips. It has taken 4 years and numerous doctors and scans to come to a diagnosis of hyperflexibity. After just one physio appointment (that's all the NHS in London will provide me with) I am no closer to making the pain in my back any better. However, as with Melissa, I also find that wearing high-heeled shoes helps to correct my posture.

    The most that doctors have been able to help me with is prescribing me Tramadol which helps me get through particularly painful days at work and telling me that I should change my career - I'm a retail manager so am on my feet for 10 hours a day. Not particularly helpful.

    Now, after 5 years of chronic back pain (at only 29 years old), I have decided to bypass the doctors and find out for myself what may help. I didn't realise all the other issues that can result from this problem before reading this blog and it angers me greatly that it took until the age of 27 for it to be diagnosed. For years I was told that I was "putting it on" or imagining it to avoid physical exercise! This debilitating medical issue needs to be more widely recognised and understood.

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  20. Nat, I'm sorry you've had such a hard time. Chronic pain can be so frustrating and depressing, and there is so much that doctors still don't know about various health problems.

    I know it's not for everyone, but I've found yoga to be very helpful. For me, building muscle to support my joints seems to be the best thing and yoga has helped me get stronger without injuries. I usually do yang-type yoga for strength building, but I've recently been exploring yin-style yoga, which is supposed to be good for joints and connective tissue.

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  21. i also have hyperflexibilty mostly in my knees and wrists, i do have a lot of trouble with my knee, i cant go jogging as if i do a few day later i cant walk as the pain is undescribeable. I would really like to tone my legs up & just wondering if you had any suggestions on how to? my ankles are quite weak due to the this and i tend to go over alot on them which had lead me to badly sprain my ankle.

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    1. Hi, Shona. A doctor or physical therapist would probably have better advice, but from my experience, I'd suggest biking, swimming or yoga. I've found yoga to be particularly good for strengthening my ankles and feet, but that was after a few months of physical therapy exercises, too.

      Here's a link I came across online for some ankle strengthening exercises: http://www.pamf.org/Orthopedics/mountainview/handouts/AnkleExercises.pdf

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  22. I was pleasantly surprised to accidentally discover that Reebok easytone shoes really helped with my ankle pain after running. I definitely have hyperflexible ankles, although they are my only obviously hyperflexible joint. If I had to hazard a guess, I would say that the air pods that are supposed to unbalance you in order to "give you a better workout" somehow makes your other muscles work much harder than my ankles. Probably won't work for everyone, and people with more serious issues than myself should probably still avoid running on them, but they have also helped me with the pain I would also get simply from long walks.

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    1. That's great, Jeanette! Thanks for sharing! :-)

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  23. I am 24 with two kids, a two year old and an eight month old. Im constantly in pain due to my hypermobility and have dislocated each knee 3 times (the last time just a few months ago while ice skating... I know... Stupid lol) and it takes over 6 months to heal all the ligiment tears. I noticed one comment from someone that mentioned their pregnancy stretch marks... Mine look as though I have been mauled by a bear... Or a few mountain lions. It never crossed my mind that it may be due to hypermobility...very interesting. Anyway... Because of the back to back pregnancies, years of breastfeeding and carrying them around all day to say that I am in pain is an understatement. My doctors seem to think I am over exaggerating and will not perscribe pain medication. My left side is especially painful from my neck to my recently dislocated knee (I tend to carry my kids on this side). My chiro says I have multiple ribs out on that side and he adjusts me, then says no lifting...just rest! Obviously the problem is that I just cant. 30 min after the adjustment I am back to having my 23 lb 8 month old in my arms (I am a stay at home mom). Anyway... I have a bone scan next week, I guess we will see what the osteo says about it. If anything. It is a ridiculously frustrating problem. I also have TMJ which brings on migrains. I can easily feel depressed and extremely fatigued for weeks. Phew...alright thanks for letting me vent! I feel a little better (emotionally) now ;) oh, and... I thought your "sexist" joke was hilarious by the way. Boy if I had a dollar for each snide sexual comment I have received about being double jointed or super flexible, I would be a very rich woman. :P

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  24. I have a three year old daughter who has hyperflexability in her thumbs, shoulders, knees, and ankles. We have seen the genetics Dr. I am getting no where. She complains that her feet hurt and wants to be carrief any info would help. My email is chasitybrown80@gmail.com thsnks.

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  25. I am also hyperflexibile, and physical therapy does wonders. I have dislocated both knees, my hips and even my tailbone, and have been going to a physical therapist for dislocated vertebrae for over a year. I never knew it was abnormal to be able to sit backwards ( my front facing the back of the chair) until someone said it was weird. I was also told there was nothing that could be done for my pain level since it's all caused by my bones moving too much. I'm super worried though because I'm only 18 and have already begun developing arthritis like symptoms in my knees. ):

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