More than one family member with CFS/fibro

Discussion in 'Fibromyalgia Main Forum' started by GBHope, Jun 24, 2006.

  1. GBHope

    GBHope New Member

    How many of you have more than one family member affected by this strange illness? I became sick in 1995. Then my husband kind of got real sick a couple years later, but seemed to recover, at least temporarily, then in 2000 my son came down with a strange illness and has suffered with CFIDS/fibro since then, kind of got better, but recently relapsed big-time with hospitalization of huge glands, enlarged spleen and liver, bodyaches, fatigue, dizziness with elevated IgM EBV titer.

    My daughter also became ill in 1999 and had an enlarged spleen with mono and has never been the same since. She is able to work to some extent and so was my son. He is supposed to go back to work tomorrow and I'm very nervous about it. He also has a positive tilt table study and I'm very worried about him.

    My husband is the one that is really bad now too. He had back surgery in March, but was struggling with the pain, dizziness, and fatigue getting worse over the last couple years. Now, he just can't recover and has very little stamina.

    All my family suffers with the fatigue and sore throats now with bodyaches if they do to much.

    My daughter doesn't get dizzy like myself, my husband, and son, but has some dizziness. What in the world could be going on.

    I can't get my doctor to take it seriously. My husband and myself see the same guy. He was really sympathetic to chronic fatigue when I first saw him in 1997. I am really scared.

    My son's pediatrician is great. She believes and understands. When we saw her last week in hospital f/u, she said my son's throat was still red and I told her mine was red chronically and she looked and hopefully that helped validate his illness a little more.

    I am deeply frustrated. I'm sorry if this sounds crazy, but it's the honest truth. Any feedback would be appreciated. They say it's not contagious, but I beg to differ.

    GBHope
    [This Message was Edited on 06/24/2006]
  2. GBHope

    GBHope New Member

    , but thanks anyway. Mold wouldn't make my son's EBV titers go up and his fever shoot up to over 103 with huge glands like when he had mono. Wish I knew what was happening. This has been going on for years. Just keeps getting worse.

    GBHope
  3. GBHope

    GBHope New Member

    Broke it up into paragraphs. Sorry about that. Did all of you get sick one after the other or at the same time?

    GBHope
  4. lovethesun

    lovethesun New Member

    She's in her early 30's and doesn't have it too bad.Linda
  5. hopeful4

    hopeful4 New Member

    It doesn't sound crazy at all. Finding out the cause will take some detective work.

    Many of us with CFIDS/FM have underlying viruses, bacteria, and infections. These then lower our immune systems, effect our hypothalamus-pituitary axis, thyroid, hormone levels, digestion, etc.

    Since families are by nature living closely together and exposed to similar environments, it makes sense.

    Some people are able to carry various viruses, bacteria and infections in their bodies, and their healthy immune systems fend them off. Then, depending on the person's genetic makeup, lifestyle, stress levels, traumas...the body can no longer keep these intruders at bay.

    In my family, I was DX w/CFIDS/FM in 2000 going to many doctors, not getting well. Went to FFC, found the underlying infections (mycoplasma, echovirus), hormone imbalances, and the culprit that started it all: Lyme Disease, which had not ever been mentioned by other doctors, and was not diagnosed until late 2005.

    Then there's my husband. He was in an accident in '03, taking care of me since '00, and slowly started going downhill. Got diagnosed this year w/CFIDS/FM, and then finally, Lyme Disease.

    It is not that uncommon for a whole family to be infected with Lyme. Have you ever been tested for that w/the IGENEX Western Blot? Most testing is not reliable. Diagnosis is clinical, and must be made by a person very knowledgeable about Lyme.

    Well, these are just my thoughts for you. I do hope that you find the answer and help you need for yourself and family, soon.

    Hopeful4

  6. GBHope

    GBHope New Member

    just Western blot a couple of times early-on. Is it contagious among people? I thought it was just transmitted by a tic bite or mosquito infected?

    GBHope
  7. GBHope

    GBHope New Member

    because going away from our home does nothing for any of us.

    GBHope
  8. diva42597

    diva42597 New Member

    My mother and I both have fibro. I know I inherited it from her and it definitely can be herreditary. I also read someone else's post about mold. If you haven't had your house inspected recently, you might want to give it a try. I have heard and seen horrible stories about families that have all become dealthly ill with different things because of problems with the house. I am in real estate and I have heard everything from mold to bat infestation. It's something to consider since everyone in your household is sick. Also, if it is a household problem, going away from the house for relatively short periods of time might not make the problem better. Some of the families I have dealt with have moved away from their problem homes and still experience chronic difficulties. Just a thought. It would be a fairly economic way to rule out a variety of possibilities.
  9. adirondackhoney

    adirondackhoney New Member

    My brother and I both have Fibro and it's "glory".
    Mom had polio/
    hmm..
    Cindy lou
  10. carebelle

    carebelle New Member

    I have two brothers ,two sister-in-laws,a cousin and two childhood friends that have these DD's.I also am seeing sign's in my children.
    I'd like to know how many people I grew up with have this from my hometown or school district.
    [This Message was Edited on 06/30/2006]
  11. GBHope

    GBHope New Member

    There must be possible outbreaks in different areas and it would seem there is some form of contagiousness perhaps? Just food for thought.

    GBHope
  12. Bruin63

    Bruin63 Member

    Well, my Siblings and I have been dx'd with FMS.
    From what our Symptoms are, we think, that both our Mother and Grandma had it too.

    My Sisters son, displays a lot of the Symptoms too.
    Plus His Mother, my sis, and also one of my Brothers has Ankloysing Spondilitis. He was dx with that also, Blood test's can confirm it.

    We have all been dx'd but at different times, my Youngest Sister, was the first, but never said anything, till, I was dx, in 2000. I could have shot her, if she had mentioned it before, I might have saved myself some Pain and Stress.

    She's really in a bad way, so I would say she had FMS more serverly, that some of us, then I'm next, and I am the oldest Sister.
    To bad, no one, does Research on Family's, when there are a lot of memebers who suffer with these conditions.

    sharonk
    [This Message was Edited on 07/01/2006]
  13. 1sweetie

    1sweetie New Member

    My husband has similar symptoms as I do and my 24 yr old son has issues also. There is no mold.

    There has been lots of info recently on a newly identified virus that could possibly cause CFS. I can not think of the name now but the information is scary. There was a thread recently on the board about it but I have received numerous articles from medical research about the recent findings. It is similar to the "bird flu" because it can cross between humans and animals. They allude to the government suppressing the information due to fear of panic.
  14. mme_curie68

    mme_curie68 New Member

    Hi -

    My maternal aunt has fibro. and has had it for a very long time. At least 40 years. She believes it is a result of rheumatic fever when she was a kid in the 50's. Both she and my uncle got sick with it.

    I did not develop fibro. until after the delivery of my second child, but it does suggest that there is a genetic component - a susceptibility to what I think is an as yet unknown virus.

    Possibly set up by EBV (I had mono my senior year in college) for me, rheumatic fever for her.

    Hugs,
    Madame Curie