Any one being treated for joint hypermobility?

Discussion in 'Fibromyalgia Main Forum' started by Defibro, Mar 4, 2006.

  1. Defibro

    Defibro New Member

    My MRI showed, that I have a disk bulge (not herniated), so the DR. asked me to get an epidural. I did two of them, separated by 3 weeks, no help. The Dr. also said that this has nothing to do with FMS, I did not even mention I was Dx. with it.

    The radiated pain through my leg stayed almost the same, only my back pain was relieved. The opposite was suppose to happen, according to the Dr.

    I went to see a Physical therapist, who told me that I am in luck, because she is specialized (25 years) in JHS (Joint Hypermobility Syndrome), She Dx. me with it. It is true: I do have double jointed elbows, I would score at least 5 points of the Beighton score test (when I was younger in my 30's or early 50's), which is enough.

    There are 9 point test, called the Beighton Hypermobility score, you need to have at least 5 of them.

    She promised me (here we go again :promises, promises going through my head), that I will be OK. Apparently it will be lots of exercices, some instrumentation that I need to buy, and help from my DH. She also told me that I don't have FMS, and I was misdiagnosed... Although I was Dx. by several Dr.'s + FFC. (I have the whole 18 points)

    Searching the web , I found out according to one blind study, that 8% of FMS patients have also JHS. In another it was stated as up to 40%. Usually all those athletic (GYm type) persons, such as Lou Raten (I don't know if it is the correct name spelling) has it, a lot of balerina's have them, etc....

    They are searching if a link exist between FMS and JHS, they are stuying it: Does JHS brings FMS??

    I would appreciate any help on this subject, especially if some one went through those exercices, and if they really helped.

    I love this board, thanks so much... Defibro
  2. Cromwell

    Cromwell New Member

    I had posted yesterdeay hoping for feedback. Mine is more or less neck, back(shoulderblades) and hands, feet. Not elbows. Son has it too same places. Got kidney infect. today so have not checked. Look for my post asking KELD who used to pst on this.

    Yeh, bummer.
    Love Anne C
  3. sfrazier

    sfrazier New Member

    Over a year ago when I was DX'ed with Fibro I was also dx'ed with hypermobility. I had no idea at first what that meant and did the physical therapy for it. My therapist knew of my fibro also so the excerses were not that strenous. I went twice a week for a couple of months and never really noticed the difference. However I was also in a flare so who knows. Might have helped more if I didn't hurt so badly to begin with. As for the instrumentation that you would need to buy I'm not sure about. I was never told about that. Oh by the way my Beighton Hypermobility score was 8. I have it in my hands, arms and legs. From my understanding it tends to make fibro worse because your muscles are weaker around your joints and that is what makes you more flexable. Hope this has helped some.
  4. cosmoo

    cosmoo New Member

    Well I don't know alot about it, but I know my S.I. joint became hypermobile as a result of a car accident. Left side is worse than the right. This instability in that joint has caused many other problems (i.e.-front of right hip constantly in state of pain cause it has to work so hard to compensate. when I am walking)
    Anyway my DR and PT recommended Prolotherapy which I will be starting soon. In addition there will be strengthening ex to do between injections to get the muscles stronger to try and help hold they joint in place. Once the tendons and ligaments are streched to far (like a rubber band ) they never go back into place, or shorten as they say to hold the joint in place . Prolotherapy stimulates the ligament, tendon whichever one is your problem to shorten itself again and hold the joint in proper stability. You may want to research prolotherapy on the web and see if it would be aplicapable to your situation. My hyper situtaion has caused tremendous instability ( and low backpain).
    Good luck
  5. Defibro

    Defibro New Member

    I will be starting Monday, don't know if its going to help either. I'll kepp you posted.

    Hugs, Defibro
  6. ephemera

    ephemera New Member

    It may be called bening joint hypermobility syndrome, but there's nothing benign in terms of pain. It sucks.

    I've had rheumies tell me I should work on keeping my joints & tendons in a "neutral position." Hah, there is no neutral position for anyone who is hypermobile.

    I'm CFS/FM & BJHS & I never know which is going to be the worst on any given day. I was diagnosed with BJHMS first, then FM. There's lots of info on the web,especially true for British sites which have lots of good info on hypermobility & EDS.

    I've done 4 years worth of warm water exercises several times weekly, but lately my CFS has not allowed me to be much more serious than being in the hot tub for 20 minutes without bubbles.

    FYI, there are also several internet sources for info, both in US & Canada that are usaually linked with an EDS site.
    best wishes.