Does anyone on here have...

Discussion in 'Fibromyalgia Main Forum' started by Sissy70, Sep 20, 2003.

  1. Sissy70

    Sissy70 New Member

    Hi. My name is Danielle and I have been reading the board for a couple weeks now and you can't even begin to know how much it has helped me. I have been on other boards, but never really felt as if I fit in. I can relate with so many things on this board. I have a very rare condition called EDS (Ehlers-Danlos Syndrome). Does anyone else on here have that? If not it is a connective tissue disorder and there are different types. I have type III and it is known to be the most painful form of EDS (not that all aren't painful). I have FMS and CFS secondary to the EDS. In EDS it is very common for joints to sublex and dislocate on a normal basis. The pain jumps from one area of the body to the next (it's not just based on the dislocations as they don't hurt until the joint goes back into place) with no rhyme or reason as to why. It's not just joint pain as there is long bone pain and muscle pain as well. I also have IBS. I have problems with my memory and finding the right words to say. Basically I have a majority of the signs and symptoms I have been reading about on this site. The post that helped me the most was the isolation post as I have been doing that for the past two years. I thought I must be depressed, but I didn't feel depressed. I lost all my local friends when my illness became much worse so I stopped leaving my house other than for appointments. I have had joint pain my whole life, but it was ignored and I was told it was growing pains. Well when I had to have a hysterectomy I ran into some healing problems in the connective tissue areas and the joint pain became very severe after I had to go through 6 operations to fix the tissue that continued to tear. I then went to Mayo clinc and was diagnosed. It was sort of a relief, because it proved that I wasn't crazy as so many doctors had made me believe. I apologize for the length of this post. I just wanted to finally introduce myself and tell you a little bit about what was wrong with me. I am really curious to see if there are any other people with EDS on this board, because it is so rare. Thank you for taking the time to read this lengthy post and I can't wait to get to know you all.

    Danielle
  2. carole128

    carole128 New Member

    Read your message but have never heard of your EDS. It sounds awful. At the moment I am having terrible memory problems. I used to be a Toastmaster but then I became so full of pain that I gave up for awhile. I would like to join again but I feel anxious that I won't remeber my speech or all the words will come out mixed up. If I do go out shopping or even to get my hair cut I feel worn out. I have odd dreams about forgetting my lines in a play, or forgetting to meet somewhere or looking after children and then forgetting about them and leaving them my themselves.
    I am having trouble thinking on how to spell the words so will stop now.
    Carole
  3. Momskelleygirl

    Momskelleygirl New Member

    I HAVE NEVER HEARD OF EDS EITHER, BUT GLAD YOU INTRODUCED YOURSELF.

    I HAVE LEARBED SO MUCH FROM THIS BOARD, AND IN TURN MY DR. HAS LEARNED A FEW THINGS THAT I HAVE COPIED AND TAKEN TO HER.

    ONE THING I LEARNED, IT IS LIKE BEING WITH FRIENDS AND FAMILY, AND WE ALL TRY TO HELP EACH OTHER ANY WAY WE CAN, EVEN IF IT IS JUST A KIND WORD.

    BEST WISHES,
    KELLEY
  4. Sissy70

    Sissy70 New Member

    My family had no idea that EDS was an issue until I was diagnosed. My grandmother and my father were diagnosed with arthritis. My grandmother has had four joint replacements and my father has had several joint related surgeries. I have tried to convince him to see my genetic dr and get diagnosed so he could be treated for the pain, but he refuses to go. He claims I inherited the illness from someone on my mother's side, but no one on that side has problems with their joints like they do on my dad's side. Also people with EDS are extremely flexible (most contortionists have EDS) and both of them are very flexible as well so I know that is where I inherited it from. I have three children and my genetic physician said not to bring them in unless they were having problems as it would be harder for them to get insurance when they got older due to pre-existing conditions. Well my middle daughter started having pain issues so I took her in and she does in fact have EDS as well. My oldest daughter and my son don't seem to have any problems so I haven't taken them in. Basically I have a lot of the same problems that the people on this board have so it's truly not any worse thean FMS. I have been to EDS boards and I can relate with people there about the joint dislocations and the pain to some degree, but they don't talk about how it affects us emotionally at all and I think that is what I liked about this board so much. You all talk about everything related to the illnesses and not just the specifics of the illness. The emotional side of it is where I am having the most problems as of lately so this site has already helped me quite a bit in making me realize that I am not crazy or severely depressed. It also feels like a family atmosphere here and I never have gotten that feeling from the e-mail lists I was on. Thanks again for the warm welcome's.

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