poll - does anyone else have this rare disorder?

Discussion in 'Fibromyalgia Main Forum' started by FMSisAPain, Sep 15, 2002.

  1. FMSisAPain

    FMSisAPain New Member

    Both my daughter and I have fibromyalgia. She also has been diagnosed as having Marfan's Syndrome which is rare and possibly life threatening. It is one thing to be told you probably will be in pain for the rest of your life, it is something else to be told Marfan's may take your life at an early age.

    The chances are that I am the carrier of Marfan's since my dad has the classic symptoms too. This is a connective tissue disorder (ligaments give out, joints have hyper-mobility, in some cases hearts literally explode, Mitral Valve Prolapse is common, and much more). Seems to me that perhaps there is a connection to fibromyalgia here.

    So I was wondering, do we have a higher incidence of this "rare" Marfan's Syndrome among our families than the general public?
    [This Message was Edited on 09/15/2002]
  2. FMSisAPain

    FMSisAPain New Member

    Both my daughter and I have fibromyalgia. She also has been diagnosed as having Marfan's Syndrome which is rare and possibly life threatening. It is one thing to be told you probably will be in pain for the rest of your life, it is something else to be told Marfan's may take your life at an early age.

    The chances are that I am the carrier of Marfan's since my dad has the classic symptoms too. This is a connective tissue disorder (ligaments give out, joints have hyper-mobility, in some cases hearts literally explode, Mitral Valve Prolapse is common, and much more). Seems to me that perhaps there is a connection to fibromyalgia here.

    So I was wondering, do we have a higher incidence of this "rare" Marfan's Syndrome among our families than the general public?
    [This Message was Edited on 09/15/2002]
  3. Harmony

    Harmony New Member

    No, I have never heard of it. So sorry to hear you daughter has it. Is there a treatment for it? How was it diagnosed? Seems like others here have not heard of it either.

    Take care and God bless you both!

    Love,
    Harmony
  4. FMSisAPain

    FMSisAPain New Member

    is largely like fibromyagia's diagnosis - a process of elimination. We struggled for 16 of her 18 years with strange illnesses that the doctors shrugged their shoulders over. There apparently is no laboratory test they can do.

    It is widely thought that Abraham Lincoln had Marfan's. My daughter is a perfect match to the profile. Very tall (6'1"), nearsighted, chest deformity (her breastbone is indented), and long limbs & toes & fingers. She can hyper-extend her fingers and elbows (a definite ewwwwww!!!).

    She faces the very real possibility of being in a wheelchair/backbrace, blindness, rupture of the aorta, or collapsed lungs. Since it is a connective tissue disorder the ligaments, muscles, and tendons can simply stretch out of shape like an old rubberband. That explains why her knees just "give out" periodically.

    There is no treatment for Marfan's syndrome. Since she had an early diagnosis, if she gets regular cardiology checkups, and takes good care of herself she may live beyond the previous life expectancy for Marfan's (30-40).

    For more info:

    http://www.ehendrick.org/healthy/00056100.html


    Thanks for the good thoughts Harmony.
  5. griswoldgirl

    griswoldgirl New Member

    and they are doing quite well. The mother is inher late 50's and has lived a good life so far. They have both had a couple surgeries over the years and have osme restrictions to their lives.

    I have fms also and my daughter was just diagnosed with fms as well almost a year ago. She also has arthritc changes in her knees already(poor kid)

    My mother had MS and so does her brother. My mom died at 39 from multiple organ failure and in retrospect my uncle and I wonder if she had some other disorder to cause her organs to fail like that. Her mom died early also from organ shut down.

    I think someday they will find there is a genetic componet to all this.

    I hope the mention of the ladies I know will help you not think about the fatal aspect of Morphan's, and help you to do some research on this disease.

    Best of luck and positve healing coming your way

    cathy
  6. Mikie

    Mikie Moderator

    I'm sorry your daughter has gotten this diagnosis and I will pray for you both.

    Researchers are more and more looking into a connection between our illnesses and a whole bunch of others. Perhaps if we could find the cause of just one of them, it would lead to cures for all of them.

    My Mother had FMS, but she was not wanting to admit it, I have CFS/FMS, and both my daughters have FMS. One suffers from vulvadynia and interstitial cystitis, both connected with the FMS. My other daughter has had to give up on nursing school because her FMS is worsening.

    I believe many of our ancestors may have had these illnesses, but no one knew what they were. Remember how many people in the old days used to talk about having rhumatism?

    Good luck to you both.

    Love, Mikie
  7. FMSisAPain

    FMSisAPain New Member

    Cathy,
    Glad to hear of your friends' relatively normal life -
    normal is somthing we all could use a bit of.

    Mikie
    Looking back I am sure my mother had FMS, she was always complaining about her "bursitis" in her neck and shoulders and taking medication which never seemed to help. I am afraid I was not very sympathetic or helpful to her, but that is a different story.


    I am sorry to hear your daughters are affected too. Do they accept it gracefully or fight it tooth & nail? Hopefully seeing your struggles they are developing better coping skills. As if we don't have enough to cope with - the salt on the wound is knowing we inadvertantly passed this on and watching our children go thru it too.

    Wouldn't you love to see the face of the doctor(s) that scorned your complaints if he/she were to hear that FMS is a genetic disorder?
  8. Mikie

    Mikie Moderator

    I did get to see the look on his face when I accompanied my Mother to her appointments (I changed docs, but she continued to see him). I think he was very embarrassed. Not only did he think it was not genetic, he though it was rare and told me I probably didn't have it.

    My children do the best they can, but like all of us, these illnesses take their toll on our lives.

    Love, Mikie
  9. peggyj

    peggyj New Member

    I live in a rual town where the hospital is only good for first aid. I was wondering if you could tell me or send me a list of the symptoms of marfans disease. My chest bone sticks out about 1 inch from the other side which makes my chest look funny. I am a 24 yr old female. My doctor told me that this was just something weird that I have to live with. He never really gave me an explanation for it. Any help you could give me would be greatly appreciated. Please email any info you have to peggyj@ntl.sympatico.ca Thank you.
  10. GooGooGirl

    GooGooGirl New Member

    My cousin's son has Marfan's Syndrome and he is 18 years old. He is about 6'6" and he has been that tall for years.
    He was diagnosed about a year ago. They told him he can never play any type of sports again. He has all the classic symptoms. Also a very good friend of my Mom's had it and he did die from it when he was in his 50's. I don't mean to scare you but his heart exploded exactly like you said, while he was having a routine colonoscopy. I'm very sorry about your daughter's diagnosis.
    [This Message was Edited on 08/11/2003]
  11. jkd7058

    jkd7058 New Member

    but only the men seem to have it. My grandfather had it, my dad, brother and possibly nephew have it. I'm sorry to say I don't know a lot about it - but I am so sorry to here your daughter has been diagnosed.

    Even though the men in my family have it, it doesn't seem to have really affected them. My grandfather lived to 97 in reasonably good health and my dad is 82 a does voluntee work at an "old folks home".