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Hypermobility Syndrome

JulieAJJulieA Posts: 1,420
edited 08/01/2014 - 8:55 PM in Arthritis, Osteoarthritis
I met a new PT person today who came highly recommended and she spent about an hour and a half going over my problems. My back, neck and knees.... She thinks I may have this. It is resinating with me. I have had super lax joints since I was a kid. Any rate she said my collagen/ cartlidge isn't stable and my joints don't know where to stop. I have a long road (more of a journey) ahead to try and re-train my entire muscle/joint system. Apparently I am quite a wreck.

Just wondering if anyone else has been diagnosed with this and what their out come was? I suppose I need to see a specialist. Thanks Julie



  • I've heard of people being more flexible but didn't think about it being hard on the body(It does make sense). It's a good thing you found the PT person you saw. I hope that things work out and you can get your body squared away. Good luck in your PT journey...
  • When I was 14,my knees and ankles started dislocating.I saw multiple Drs. over the years.I normally was on crutches or legs in full length braces most of every yr. until I was in my 30's.As I got older,things got a tiny bit better.
    I had arthroscopy done on one leg in the 80's(?).They said the grooves my knee caps set in, were too shallow and there was nothing they could do for me(I do know it probably did not help that at that time I had no insurance)
    Years later I was diagnosed with patellor femoral disease.I was then told I could have had a tendon from a cadaver put in to help give me extra support for my knee caps. But by then I was already diagnosed with OA.So I decided to just wait until I need total knee replacement,which will come eventually from all the damage I had done to my knees over the decades.When I was 38 I filed for disability because of DDD in my spine among multiple things.
    Lost my train of thought,LOL....
  • Hypermobility describes the joints that extend beyond normal. Hypermobility syndrome is generally considered to comprise hypermobility with other symptoms such as myalgia and arthralgia. It is relatively common in children and affects more women than men.
  • Oh Julie...just what you need honey...more stuff to think about...I am so sorry my friend!!!

    All I can say is that if you need me, for anything, just let me know...I am here for you!!!
  • Julie, That is a very interesting article and it agrees with some of the things I was told of as a child.

    While I do not think I was ever diagnosed with (JHS), I was treated for what my doctor called ligamentous laxity, also diagnosed as a child with kyphosis and epiphysitis of the vertebra which, we were told were the basis for my pain from 7 on. By 17 I needed knee surgery which would correct my knee from sliding out of the joint space while I walked. I had a lifetime of falls and injuries when mostly my knees, but it happened with most of them, they would disjoint and my kneecap would be outside the jointspace and visible on the outer side of my leg. While I do not fit most of the rest of the description,I was tall and overly slender as a child, I do have A-Fib, but I was told I got it as a result to my having had an allergic reaction to valium prior to surgery and not genetic (tho' both my mom and dad have/had it and a number of the grands)

    I do think if I were you, I would definitely see a specialist-if they feel this is a problem you have.
    Do you have many of the things he talks about in his article? It would be so interesting to find a solution to what all is going on with you, you know? And, if this is an issue for you, what will/can they do to help you?
  • Unfortunately it is incurable and degenerative however there are ways to cope of course. Really good book called "bending without breaking" by Isobel Knight, give it a read, lots of different symptoms ie youthful looking soft skin!
    Kirsti x
  • edited 01/16/2016 - 7:38 AM
    I was diagnosed in 2011 with hyper mobility . I don't think it did me much good. I still have a world of spinal issues. I am still not sure how this diagnosis is supposed to help me. Can you honestly retrain your joints to know when to stop? I've never been able to in all my life. lol. It would be quite an accomplishment. Please do tell about how your treatment goes. I'm still on my way to a fusion at two levels. Best wishes, and message anytime!
  • I think you will find the hypermobility syndrome is more commonly called Elhers Danlos syndrome it is a connective tissue disorder. Hypermobility being only a part of the syndrome it can affect all the major organs as it is a connective tissue disorder. It also tends to go hand in hand with other syndromes such as postural orthostatic tachycardia. It is important to have your heart valves checked to make sure it is not vascular. Both my daughters and my husband have it. My eldest daughter writes a blog post called themyastheniakid don't get confused by the name she started the blog when she first became ill and it was thought she had myasthenia gravis. She has thousands of followers including medics. I hope this information is of help.
  • itsautonomicitsautonomic LouisianaPosts: 1,813
    Spinelessjellyfish, having proper diagnosis can mean a world of difference. This may be in fact causing some of the spine issues and can change some doctors approach. If it is elhers danlos syndrome causing they hyper mobility you should really be seeing someone who specializes in that as I know it has many, many other problems it causes or accompany it. Many I know suffer autonomic issues along with severe central pain. Once this pain was controlled they were able to focus on treatment for the joint damage and take correct steps.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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