Tuesday, March 09, 2010

Hypermobility Syndrome Anyone?

Holy Crap - I'm Hyper Mobile!

So, I have had increasing joint pain and joint stiffness in the last few years, as many of you hip folks know. What's been odd is that its not just in my hips anymore. Its my knees, my shoulders and elbows, even my fingers. Its also been coupled with fatigue, difficulty sleeping, headaches and muscle pain. So I was finally sent to a rheumotologist. She took one look at me and had me do a couple of my neat double jointed tricks (I can basically tie my fingers in knots, my knees practically bend backwards, as do my elbows, my feet can twist almost backwards, etc. etc.) and said that I was hypermobile. Hypermobility Syndrome to be specific.

Now she didn't act like that could be the cause of any of my troubles and told me to avoid yoga at all costs (too late) and that she'd keep testing me for the real cause of my problems (like RA or Lupus, both of which I test negative for). But here's the deal....I started looking up Hypermobility Syndrome and it can cause ALMOST ALL OF MY SYMPTOMS!!!

And I'm thinking that should include my lingering hip pain. I've asked my OS about that and he said my hip is perfectly positioned and he sees no reason for my hip pain and what if he's right? What if there is no Hip Dysplasia related pain left in my pao'd hip but it's HYPERMOBILITY PAIN? Eh?

What about that??? Any of you other Hipsters out there Hyper Mobile? Let me know!!

Now if you'll excuse me, I must begin my lengthy research into the topic of hyper mobility.

10 comments:

  1. Hello H,
    Your post on hypermobility popped up on my search for exactly that. You are not alone. Hypermobility Syndrome has recently become synonymous with Ehlers-Danlos Syndrome - Hypermobility Type, especially when other issues like fatigue and muscle pain.

    Check out www.ednf.org. When I found them, I was finally at home with my symptoms that took 33 years to diagnose!

    You very well might have had (and may have again) hip dysplasia, which is very common in EDS. If you've worked to strengthen the muscles and realign the hip, you probably resolved some of the issues on your own. I haven't read through your history, but you have a label of post-op pain so I am guessing you've had surgery? That can also help, though maybe only temporarily in EDSers.

    Back to the dysplasia diagnosis...
    Osteoarthritis and stuff like bursitis can easily result from or accompany years of dysplasia problems.

    Check out EDNF.org and my own blog for other stories (blog roll) of people living with EDS.

    Feel free to contact me as well.

    Kindly,
    e

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  2. I am hyper mobile too (or as we used to call it: "double jointed"). Not to the extent that you are, it sounds, but I do believe that it is somehow tied to some of the problems I have.
    When I did research on it, I learned that we are more susceptible to arthritis in all our joints, which carries plenty of symptoms.
    Good luck with your research and I hope you get to feeling better soon!
    Cassie

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  3. i am penny i'm from the uk i have hip dysplasia and have had 3 ops as a child i now suffer from hip and knee pain and am having a arthrogram thursday your blog has been very helpful i too have very flexable joints i'm now 32 with 3 children and a little overweight i have tryed to lose it but it hurts to exercise i'm very worried about my work and my children how will i manage? how old were you when you had your last op?

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  4. Hi Penny! I was 26 when I had my right side PAO and I'm 33 now.

    I have a lot of difficulty exercising as well and the only exercise I can do regularly is swimming. I take water aerobics at the local community pool and its really wonderful! As all the ladies in my class are a lot older, I got over being self conscious of my bathing suit body quite quickly. (I need to lose some weight too.)

    I am also the kind of person who has difficulty losing weight. The only thing that works for me, especially since I'm not exercising much (water aerobics doesn't burn a ton of calories) is reducing my diet down to 1200 calories a day.

    Its very difficult, but you get used to it quite quickly (after about 2 weeks, its not that bad) and it really works. You should never go lower then 1200 calories, but somewhere b/w 1200-1300 was what my doctor said was perfectly safe and had to be effective.

    Always check with your doctor first, but that helped me quite a bit. I still need to lose more weight, but I'll be going back to my 1200 soon. (school has been murder this semester so I took a break from the old diet).

    Good Luck with everything and feel free to e-mail me with anymore questions!!

    Heather

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  5. Anonymous6:16 PM

    Hi!!

    After years of odd and uncommon health problems (and I'm only in my 20's), I was finally diagnosed a few months ago with Ehler's-Danlos type III, which is the hypermobility type.

    I have bilateral hip dysplasia, they say is likely a result of my Ehler's-Danlos (EDS). In utero, because of my hypermobility, my doc said that the hip sockets didn't form properly, so perhaps this is true in your case as well? And with the extra hypermobility, it puts extra strain on the joint.

    I also have a left hip impingement which is adding to the problem. I am having an arthrogram MRI done this week to ensure there are no labral tears in preparation for PAO surgery.

    I'm pretty anxious right now about the whole thing.

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  6. Hey there! EDS-III could very well be the bulk of my problem as well. I don't know b/c my rheumy says genetic testing is expensive and I have terrible, miserable insurance.

    The Arthrogram MRI isn't too bad. Most people breeze right through it with no problems whatsoever. I had a few issues but I am pretty sure that was b/c I had a lousy tech performing the procedure. I mean, he had to stick my hip 4 times to get the needle properly positioned - that couldn't have helped. :)

    I'm sure you will be fine. Trust me, if I can do it - You can do it.

    Hng in there and feel free to e-mail me with any questions about the MRI Arthrogram!!

    Dysplastic

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  7. I'm hypermobile. I was diagnosed with DDH when I was 6 weeks and have had chronic hip issues for the past 7 years (I'm 29 now) and can't get an ortho to take me seriously. I just get told that it is all in my head and written off. It is frustrating--especially when I have a diagnosis.

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  8. Hi! First off your blog has been very helpful. I do not have hip dysplasia (yet) but I had surgery on my right hip 6 years ago for a labrum tear, and since then it hasn't been right. I'm getting an arthrogram MRI in a few days, and came upon you blog when searching for info. I just wanted to say that although it sucks, I'm glad to see that there are other people going through similar struggles. I'm the only person I know my age with hip problems (well i take that back my brother just broke his hip, hes a few years older, we're both in our 20's) but its a small consolation. Especially reading your brave choice to chage careers - I worked in kitchens up until recently, when I literally couldn't take the pain anymore. Unfortunately, I was very active and I've had to change my lifestyle to reflect dealing with the daily pain.
    All i can say is that being active is an important goal for me and its very important to healthy joints, and everyone should try to do as much as they can to stay active. Good luck =)

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  9. Hi All,

    To start with i'd like to say thankyou for this blog and to know that there are other young women out there suffering with this daily pain. (Gee that sounds selfish sorry) but it is how i felt when i sat here and read it last night.
    A little about myself, i am 32 and have just been diagnosed with bilateral hip dysplasia, coxy vulga, zero ichium bones (yeah they just didn't grown apparently) and osteoarthritis in my left hip which is the real sore one. I've been in pain for about 4 years but always went to physio's chiros and was never diagnosed. I ended up going to my GP because i couldn't sleep at night and needed drugs. She sent me for xrays in September and here we are!!
    Yesterday i went for my first MRI with those needles. OMG im so glad i didn't google that first, i may not have gone. Thought i was getting injected with dye in my arm or something then freaked out when i realised what was about to happen!!
    My surgeon was looking for a tear in my labrum (haven't got the results yet). He wants to do a THR on the left side but my insurance wont cover that for 12months. (Im an Aussie with young persons private insurance however Total Hip Replacements are only covered by the higher level of cover GRRR).
    In a way i'm kinda hoping there is a tear (as that op is covered straight away) but realise this might just be a quick fix or even no fix at all.
    Im so stressed about it all, i walk like an 80 year old and feel like a constant winger (and who likes them!)
    I just don't know what to do.
    Has anyone got any suggestions or ideas? Should i get the tear fixed (if there is one) now and then get the THR done in a year? Has anyone done this before or heard of it working?
    I hope i didn't ramble on too much and i realise my Dr is the only one who can really answer these questions, i just can't see him until December. Please help.

    Renee

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  10. Anonymous6:24 AM

    hi just came by this blogg and read through everyones letters,iwas diagnosed with bylateral hip dysplaciia in 2008.im slightly over weight and found it difficult to hold down any work.every days a different day for me as the pain moves about .some times it can be pain full if i sit at a normal dining table a tend to get pain in my spine and lower back and find a have to get up and stand to relieve the pain.there are times a found my self fall over as my leg gives way.every day normal things are a chore as a suffer more, from carrying things like 2 litre carton of milk as a feel its to heavey and want to drop it .also have athiritis in my joints and a was diagnosed with eosteomalicia(weak bone density)which am curetly taking caleos 3 times daily.feel like am waisting my time with doctors as i know my condition is deteriating as i get older.im 47 this year and a was wondering if anyone has same symtoms and conditio as me , and wondered how they manage to get any partime work as little as 2 hrs a day just to get outof being stuck at home

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Hi Guys. I don't really check this much anymore. You are welcome to comment though, I just can't always promise you a personal response. I do hope this blog has helped though!