Hypermobility Syndrome FM Ehlers - Please Reply

Discussion in 'Fibromyalgia Main Forum' started by CarrieLynn, Sep 6, 2006.

  1. CarrieLynn

    CarrieLynn New Member

    Hi, I'm new to this site and was dx w/ hypermobility syndrome a couple of yrs ago and Rheum said that I met most of criteria for FM as well, but he is not sure as my HS could be causing all my pain. It all started when I was 13 and I could dislocate my R shoulder, during a nurse check up during basketball I showed the nurse what I could do and she was shocked and said go see ortho immediately. It was causing no pain at that point and was just a cool party trick. Ortho wanted to do surgery right away (back in 1983), but we didn't. I was restricted from playing sports and Dr said not even to lift my arm above my head. Well, bounce forward a few years and my R shoulder started really hurting when in use. I've always had severe back and neck pain and was seeing chiro 3xweek when I was 15-16. My R shoulder would just get on FIRE with use. I have tons of "injuries" where I would pull my back out while putting on a pair of pants, or turning over and neck decided to seize up and only go to one side (Dr. called it something inparticular but I can't remember). I was always pulling something out by doing virtually nothing, just normal movememtn. Then a few years ago my R knee started buckling going up stairs. Also major stomache problems and Dr. dx w/ Celiac disease, so tried to stop eating gluten which helped in one way but still had major stomache problems only the opposite of what I was used to. Then I found a good GP and I decided that I've got to find out what is going on. Sent to rheum and he dx HS and FM. Now my left shoulder subluxes and goes back in wrong and pinches a tendon (this happens a lot). My poor 9 yr old son has to pull on my shoulder to try to stop it from pinching tendon. Anyway sorry I'm going on forever. So basically now both shoulders, both knees sublux all the time. Occasionally other joints such as ankle, hip and such will do something weird or swell up and caused more pain. I started doing research on the net and saw about Ehlers. Is Ehlers the same as Hypermobility Syndrome because I see it listed as a sub category? I haven't worked in 10 yrs and Dr. recommended I apply for SS disability, so still waiting for hearing at this point. I try to manage my pain by decreased activity, especially on the joints that cause most of the pain, muscle relaxers every day, 1600-2400 mg of prescription Ibuprophen every day and occasionally pain pills when needed, heat, ice, massagers, braces, arm slings and wraps. My closet looks like a medical inventory store. These help somewhat. But my main questions are does anyone know of any medical documents which really talk about HS and what it is that I can print and show my GP and my PT? I see a lot of good info from people suffering. And if anyone wants to just talk....it is nice to read others stories, especially regarding the "invisibility factor". Thanks and have a great week!!!!
    [This Message was Edited on 09/06/2006]
  2. justjanelle

    justjanelle New Member

    I understand just what you mean about the problems caused by dislocation and subluxation, although it certainly sounds like you have more frequent problems with them than I do.

    Mine is mainly an extreme form of double-jointedness, but I do have dislocation and subluxation problems with my shoulders and knees.

    Do a Google search on "Ehlers-Danlos Syndrome" and "diagnosis". There are some sites that describe the different types of Ehlers-Danlos and how they affect the body. Diagnosis is done mainly on the basis of the doctor's observations of the looseness of the joints, and there are several sites that show the physical "tests" they have you do ---if you can do a certain percentage then you're considered to have the condition.

    These tests are things like bending your little finger back to touch the top of your wrist, bending your thumb down to touch your arm, touching your fingers behind your back when reaching one hand behind over your shoulder and the other hand back under your shoulder, laying your palms flat on the floor while standing, double-jointed elbows and knees etc. The sort of things that are fascinating to elementary children.

    You asked if there were different kinds of hypermobility syndrome. I'm sorry I can't help you there. I do know that there are several kinds of Ehlers-Danlos Syndrome, which is a kind of hypermobility syndrome. I do not know if there are other types.

    Hopefully someone else will see this and have more answers for you.

    Best wishes,
  3. MtnDews

    MtnDews New Member

    Carrie, you may want to go to a geneticist for a proper diagnosis. They are really the only doctors that I've found that actually know about Ehlers Danlos. Sounds to me like you have it, but without documentation, it doesn't count. I'm beginning to believe that the world is made up of only doctors and lawyers...regarding disability. Check out the Ehlers Danlos National Foundation website. There is information there.
    Also there is a vascular EDS and you should be screened for that if possible...your son will have the same kind of EDS as you do.
    Hope this helps some.
  4. CarrieLynn

    CarrieLynn New Member

    Boy, that is the same feeling I've been getting as I read other's stories. That I could have written it myself too! But I wanted to tell you what my dr told me (of course check with your own Dr first). But he said when my shoulder goes back in "wrong" and pinches a tendon, to lye belly down on a table/bed/couch, whatever and have your arm to the side. Have someone gently pull on your arm straight down. No jerking, just gently pull, he said that could stop pinching the tendon and that it still may hurt for awhile and limit use, but at least hopefully the tendon wouldn't still be pinched. He said this would not "injur" the shoulder. Thanks again and I'll be back to this board frequently!
    [This Message was Edited on 09/06/2006]
  5. CarrieLynn

    CarrieLynn New Member

    Thanks for the info. From what I've read and my symptoms - It seems I have Ehlers. But only been dx w/ HS and FM. But certainly I need to find out for sure. I have two boys and it scares me to think they could have this. My 9 yr old doesn't show any signs of hypermobility, but my 5 yr old does. I know that doesn't mean that they will develop the syndrome, but I'm worried. Thanks again and I will be back to this site often for info and support. Have a great week!
  6. CarrieLynn

    CarrieLynn New Member

    Thanks for replying and I'm new to doing these message boards and internet chatting - I've always avoided it. But it certainly seems it is a great place to get support and info! Have a great week!
  7. dianahubb

    dianahubb New Member

    Hi Carrie (love that name)

    I have Chiari Malformation and Tethered Spinal Cord. The National Institute of Health is doing Clinical Studies on EDS AND it's possible link to the above diagnoses.

    I am scheduled for surgery at The Chiari Institute in NY in Oct.

    The Chiari Institute is working with the NIH on these studies because they have found a high incidence of EDS in people with Chiari & Tethered Spinal Cord.

    Anyway the reason I was writing is because on the chiari website they have an EXCELLENT video you can watch on line about EDS.

    Their website is their name...thechiariinstitute

    Hope you get more info! Take Care, Diana
  8. Ginner

    Ginner New Member

    I have never heard of this. I had to go to ER during the holidays last year for a dislocated knee just from kneeling - moprphine drip even!!..and a dislocated shoulder one time..hmmm
    I am new here, learning alot, thanks for sharing!
    Bed time now I will get back with questions soon, if you don't mind.

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