Double jointed and FM, very common?

Discussion in 'Fibromyalgia Main Forum' started by Chelz, Mar 28, 2011.

  1. Chelz

    Chelz New Member

    I had just recently seen a new rheumy last week. Although he was kind of brash and "old school", he was the only rheumy I ever saw who actually spent an hour with me and gave me a fuller examination.

    He had told me something that I NEVER knew about FM. He said I was double jointed (hypermobility I think is the medical term), and that I was pre-disposed to getting FM.

    He seemed like the kind of doctor who might engage in more conversation once he has seen you for a while, but not at first. Unfortunately, I had extra poor sleep the night before and I was having a bad case of brain fog, so I didn't ask too many questions, just listened to what he had to say.

    Of course, being who I am, the next day I went searching on the internet about hypermobility or double jointed info and I just couldn't believe how they described me perfectly.

    I have often wondered how at the age of 8 through 10, I was able to take tap, ballet, jazz and expecially...............acrobatics. I was so incredibily limber, I could do back flips, cartwheels and so many more "acrobatic" things than others in my class, or at least I was able to pick up on it much quicker. I laugh now because if I had attempted to do any of those things later in life, I would wind up in the hospital for months, LOL.

    I remember my mom taking me to the doctor when I started to experience a lot of pain issues, such as pain in the lower back, calf pain something terrible, hip pain, and I was so young. The doctors told my mother it was "growing pains", which I had found out is a typical answer for children and young teens who are experiencing problems becuase of hypermobility. I used to tell my mom that it shouldn't hurt to grow, and I was right. The doctors all thought I was trying to seek attention, or was a "young hypochondriac", when in reality it could have been because I was double jointed.........and in my later teens developed fibromyalgia along with TMJ.

    When I reaserched the information, what the doctor had said was right, maybe I was pre-disposed to get this. It sounds really strange, but it was kind of like a relief for me, not that it helps now though, I still have the FM regardless of how I got it, but I really thought it was interesting. Has anyone else been diganosed or just told by a doctor that you may be double jointed? Hugs, Chelz.
  2. justjanelle

    justjanelle New Member

    and I've seen many others mention here on the boards that they did too, so there does appear to be a connection. However, when I asked my rheumy about it, he said that he wasn't aware of an formal studies connecting the two.

    Wish I had more information to share about it.

    Best wishes,

    PS -- about the growing pains. I had those too, but haven't heard that they were connected to the hypermobility.
  3. ILoveGreen

    ILoveGreen New Member

    I too have "hypermobile" shoulders and hips. From early on I could move my femur in and out of the socket... And here I thought the FM was brought on by all those car accidents! I have had a lot of achiness and soreness that feels like it comes from the inside out; almost as if it starts deep in the bone marrow.

    Interestingly enough, while I was caring for my mother she had a hip replacement. All of that time spent waiting for her appts gave me time to read up on the subject: apparently hypermobility is an indicator for future hip resurfacing and possibly replacement.

    I wonder if anyone has had hip resurfacing? Supposedly it's better to have it done sooner than later as a preventive measure for total hip replacement.
  4. luigi21

    luigi21 Member

    A j Holmes did an article on this may be worth googling
  5. ILoveGreen

    ILoveGreen New Member

    Check out Ehlers-Danlos Syndrome. After a visit to the ortho for cortisone injections in my hips for bursitis, a very astute P.A. noted my hypermobile joints among other things and suggested I get assessed by a rheumy for EDS. You sound like you may have a variation of it as well.
    My hope is to get on a specific exercise program that does only good (the wrong kind of exercise (too much stretching, weight bearing, etc.) can do more harm than good) and decrease the pain!
    Good luck!
  6. jole

    jole Member

    Chelz, your story sounds so familiar. All the childhood pain. Was sent to a huge Children's Hospital because they thought I had rheumatic fever. Was put on antibiotics, and told I'd probably be on them until the age of 21 (well, I became allergic to them shortly after so that was ended). The tests all came back negative for rheumatic fever, and I was sent home without a diagnosis.

    With the FM I was also told I was very hypermobile, and have seen that mentioned here in the past. And like ILoveGreen, so much of my pain seems to be deep in the bone. Haven't heard anyone mention that before. Gotta say, you gals are

    Will look up the EDS.
  7. gb66

    gb66 Well-Known Member

    One of my granddaughters is hypermobile and it was at first thought that she had Ehlers-Danlos Syndrome, but it turned out to be Marfans Syndrome. She's 6 feet tall and on the thin side.

    This is a very serious conditon. I think it has to do with the tissues and muscles being loose. She has had several surgeries for curvature of the spine and a breast augmentation because of one underdeveloped breast. She has to be evaluated periodically for heart and eye damage. She's 25 years old now .

    They asked if anyone in the family had Marfans but no one does. It's definitely heridtary. I guess it's a tissue related disease like FM only much worse.
  8. ILoveGreen

    ILoveGreen New Member

    are both genetic diseases that can cause many complications throughout life,as I've learned during my recent research. Unless one has been genetically tested, there is no way to know for sure if you have either of them or not.

    In my quest for information and knowledge, I came across many "coincidences" regarding family history which I believe could be related to EDS symptoms. My doc asked me, if I test positive, how receptive my family would be to getting tested. That is a very good question. Right now, I tend to think they may be of the "shoot the messenger" school of thought, since many of them, after 12 years of me having CFS/FM still can't understand that I have a disabling health condition. I'll cross that bridge when I come to it.

    Looking forward to hearing if anyone else has gone through or is going to get genetic testing done and what good comes from it. :)
  9. sarahcatherine

    sarahcatherine New Member

    I haven't been tested for EDS, but when I was first diagnosed with Fibromyalgia and CFS, all of my doctors commented on my hypermobility.

    I have always injured my ankles and knees easily. Pain around my knee caps finally became unbearable (and caused fibro flares), so I went to see an orthopedic. I am doing physical therapy to strengthen my quads and am getting fitted for custom orthodic inserts.

    The doctors have all mentioned that my knocked knees have also contributed to my knee pain. I am kind of upset because my mom brought the shape of my legs up with my doctors many times when I was young (Like the first poster mentioned, I was in constant pain as a child and the doctor always thought my mom was over reacting). It turns out that braces for my legs when I was 11 or 12 could have corrected the issue.

    I am looking forward to the orthodic inserts, even though I am not looking forward to the shoes that they'll fit in!

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