Discussion in 'Fibromyalgia Main Forum' started by faithinlove, May 7, 2009.

  1. faithinlove

    faithinlove New Member

    I am interested in knowing if any doctors have told that this dd is hereditary. I have not found it to be in my family but my 17 year old son has been in some pain and has all of the trigger points and complaints of the same things that bother me. He also has trouble getting deep sleep.
    Could this be just a growing teenage boy or do some of you think I might need to be concerned that he has this awful thing to bear. I do not want to alarm him or even let him know I think he could have this. He sees what it has done to a Mother that was once a very independent ,educated ,working woman who is now on disability for this dd. Some days I hardly have the energy to get out of the bed because of the pain but I stay strong for the both of us.
    Please tell me if any of you think this could also be happening to him?
    God bless you all, hope for better days for all of us.
  2. 3gs

    3gs New Member

    My feeling is it is. My dad had fibro and now I really think from learning that he also had CFS. I have both and suspect Lyme.

    Iam seeing all the signs in my daughter and grandaughter,possible the other two grandkids too. Have read alot about this running in families.

    I really worry about my teenage granddaughter because she complains about alot of symptoms I have and mom thinks she's just a teenager.

    Teens do want to sleep alot,or not do chores etc but.My granddaughter has trouble getting to sleep/sleeps alot,racing thoughts,always cold,pain,can't process info(struggling with school)sensory overload etc.

    My daughter is in denial and always says they dont anything for you so why bother.

    Sometimes I wonder if Im just overly sensitive to things in kids or if its real.
    Bless you maybe have son cked out
  3. gasolo

    gasolo New Member

    I have csf, my younger brother had csf, my mother has fm and my older brother has multiple sclerosis. A coincidence?


  4. satchya

    satchya New Member

    My mother definately has it, my grandmother (her mother) may have it.

    I think my oldest daughter has it, or some variation of it. She has always had migraines since infancy (which so far have not run in the family) but she also has the super sensitive scalp that me my Mom and her Mom have had. She has the difficulty sleeping, sensitivity to cold and heat, sensitive nose and ears, sensitivity to flourescent lights, sensitivity to uncomfortable clothes, shoes, scratchy blankets, etc.

    When she doesn't feel well she really, really doesn't feel well. When she gets a scrape it really, really hurts she can't just brush it off. I don't dwell on it when I talk to her, but I won't be surprised if that's what she is eventually diagnosed with.

    I try to give her a litte extra room to recover when I think she needs it. I know my own Mom always used to accuse me of being melodramatic and trying to get attention when looking back I know I was really truly in pain and not feeling well.
  5. Forebearance

    Forebearance Member

    Hi Faith, 3gs and Gary,

    This is certainly a scary subject!

    I think that parts of CFS and FM might be hereditary. I did a genetic test called the HLA-DR by PCR, and it showed that I do have a genotype that makes me more susceptible to certain kinds of neurotoxins. My mom and brother have it too. In my case it makes me unable to clear out the toxins that toxic mold makes.

    There are also people who are unable to clear the toxins made by the Lyme bacteria. And a few people who can't clear either kind of toxins out of their bodies.

    I think it's worth doing that test just to know. If I had known that I was susceptible to mold toxins, I would have been more careful in my life. I wouldn't have lived in basement apartments. Or worked in a basement office.

    A doctor named Ritchie Shoemaker thinks that CFS and FM are caused by a build up of neurotoxins in the body.

    Another thing which is pretty scary is that if several people who live in the same house have CFS or FM, it could be a sign that the building has a toxic mold problem. It's just something to keep in mind.

    [This Message was Edited on 05/08/2009]
  6. pitoune

    pitoune New Member

    Yes, I do believe that FM is hereditary. My sister who is only 1 year 1 month older than me was diagnose one year before I was with this dreadful dd. Her's is very different than mine cause she has plateaud for many years without any new symptoms but now she's getting really bad. When I was diagnose 17 years ago, I was is a lot worse situation than she was and I'm not in a wheelchair and she's still trying to work.

    I've also been watching my daughter for the last few years as she is showing signs of FM. She is 27 years old now and just gave birth to her second child in January and just can't recuperate from it, always in pain, can't sleep, mega headache, depressed, pain, pain and more pain. Sounds familiar??? I have not told her of my fear either. I rather a doctor do tests on her and she finds out on her own since there are no scientifics tests to prove it might be hereditary. My dad's sister also has FM and has to use a wheelwalker to get around.

    I'm now 51 years old and not looking forward to seeing any of my2 children or 5 grand-children grow up to find out they might also have this dd cause to tell you the truth, I would not wish this on my worse enemy. In my case, I've never been able to get adequate treatment for my condition or test other than getting pain killer "Morphine" and "Valium" to ease some of the spasms. I don't like my life one bit and don't want my children or grands to have it but unfortunatly, I think it might be a possibility. When you look at it, 3 in the same family???? Need I say more! May God watch over them.

  7. FMsaddenedspirit

    FMsaddenedspirit New Member

    Hello Faith,.

    I asked my Fibro Doc the same question.. she advised yes , there seems to be some research that backs that up.. and its a good idea to have the person checked if they are showing symptoms . We asked because of my dauhgter. , we had been trying for years to find out whats up with her . Cronic Pain.. tummy problems,IBS .. she has been teseted for Glution also and quit a few others .sever alergy to MSG .
    She Had some employment issues after having her baby so no Med Insurance. so she has not been checked for Fibro yet. but will be as soon as she finds a good Doc in her area.

    sorry to hear your son is having probelms.. heart breaking to think our children may have this DD . as So young . Might be a good idea tohave him cheked ,and to look into his sleep problems. I pray its not... but let us know what turns up ok.

    my best wishes ... soft Huggles. Spirit. :)
  8. deadtired

    deadtired Member

    Faith, I haven't been told by any doctors whether its hereditary but I am often consumed with wondering the what, how , where and why's of this disease. All my children are afflicted and I believe so since birth, as I could see symptoms, the fatigue and look in their eyes. I ended up pulling the younger three out to homeschool after realizing the damage the grueling schedule of attending public school did two the older two. The older two boys accept the diagnosis, the younger three children,no. Our daughter is adamant she doesn't have it, as she doesn't seem to be susceptible to virus's like the older two, yet she has extreme insomnia and depression. The youngest two thank goodness are doing ok but I worry alot about them. Last year our youngest son, 17 yrs. came down with mono after joining a lacrosse team and youngest daughter,13 has strange aches in her legs.I am always trying to keep them from overdoing it physically. I try not to focus on the health issues but there are many days I feel cursed. The whole hereditary theory seems to go out the window in our case as my husband has
    CFS also . We both succumbed at the same time after a dreadful flu and our two older children at the time followed suit. I am left with the feeling that this disease is perhaps something infecting our blood passing through the generations and to spouses in that manner. Or perhaps, it is transmitted casually and there is something perhaps herditary in our response to it. Still, it leaves it a huge conincidence that my husband would have the same hereditary problem. Oh, I am from a large family and noone has anything even similar to this. My husband's only sibling is super healthy and very athletic and never sick. His parents had alzheimers, however. My parents were always very healthy and still are in there 80's. Only similarity would be my mothers insomnia in her later years. I never saw her sick a day in my childhood! Another theory I have concerns the polio immunizations. My husband and I may have received contaminated vaccines as there many lots that were in the mid-fifties when we received them.
  9. faithinlove

    faithinlove New Member

    I do appreciate all of your information. I will have to take him to the doc and see what they say. I just really hate to let him know I think anything about it but some things we have to do even when we do not want to do it. I only hope that our children and grandkids do not have to suffer with this intolerable pain and fatigue.
    God bless all of you and your families
    Keeping the "Faith" for better times." Faith
  10. cfsgeorge

    cfsgeorge New Member

    like heart disease, addiction, diabetes, cancer, MS, parkinson's, etc. You will have about 8-10X greater likelihood to develop the same disease(s) that runs in your family.

    Now if you think FMS and CFS are infectious diseases like HIV/AIDS, then the genetic/hereditary argument does not apply. Are we born with it or do we acquire it later in life? no one really knows do they?
  11. loto

    loto Member

    if this is hereditary, but i've read that it can be. I don't know of anyone in my family that has had FM, but i do have an aunt with RA. I worry about the same thing happening to my kids. I think my 16 year old daughter would be the most likely to follow after me. I pray not though. I'd hate for her or my son to have to live with this evil "stuff". I shouldn't say what I really want to call FM!!!!
    Maybe your son should go for a routine physical and get checked out?

    My prayers are with you

  12. Debra49659

    Debra49659 New Member

    My grandfather had FM...though it wasn't called FM. I wonder if my youngest daughter has FM because she has many for the same complaints.

    I hope not though, I can't imagine passing this along to anyone.

    Take Care,
  13. cfsgeorge

    cfsgeorge New Member

    GWS is not hereditary, but it is acquired. Further, it is slowly infectious with ~70% of family and pets getting the same symptoms after a few years.

    CFS outbreaks around the world point to an acquired infectious disease. no one in my family has CFS or FMS so what does this mean to me? i'm on the acquired side not hereditary. the question for me is "will i pass this disease on?"

    As for FMS, i hear more stories of multiple family members getting this later in adult life. hereditary or acquired? maybe both for FMS?
  14. outofstep

    outofstep Member

    Heredity probably does play some part in developing CFS-people can be affected differently by the same infectious disease. Polio is a good example-some people have no symptoms, some people have flu-like symptoms, and a very small percentage (around 2%) get paralysis. CFS could be the same deal where everyone is exposed to the same pathogen but have different reactions to it, b/c of genetic differences.
  15. cfsgeorge

    cfsgeorge New Member

    What is the infectious agent in CFS?

    We can't prevent or treat without knowing the cause.
  16. outofstep

    outofstep Member

    I really think that Chia and der Meirleir are on to something with their research...

  17. cfsgeorge

    cfsgeorge New Member

    I was referred to dr chia from my internist, but i eventually decided not to go see him during the 4month wait. I didn't show any GI symptoms that an enterovirus would cause. further, he is focused on those who had an acute infectious onset which could provide the link to an enterovirus infection. my CFS came on gradually over 3-4months with no infection-cold/flu. I didn't see myself as a good candidate for him and he didnt look like the right type of doctor for my type of CFS.

    Dr Chia is too focused on just enterovirus. according to his research, he says 82% of PWC have it while only 22% of normal people have it. 22% is a huge#and 82% is not huge enough. get it? too many doctors and researchers are focused on only one small part of CFS like one pathogen. Dr Nichols has his hands only on mycoplasma and others on HHV6. None of these are the cause or the infectious agent causing CFS, they are all re-activated and re-acquired pathogens that a normal immune system would not have. These pathogens are also seen in many other chronic diseases like lupus, autism, RA, AIDS, etc. It's just that all our body systems are so affected that these multiple infections come to life. they are not the cause.

    I like Dr der Meirlier's work and i have his books. he's so smart, innovative, very detailed, and most of all, he looks at the bigger picture much like cheney. However, he and everyone else is still missing the "big picture" when it come to CFS. i hope he and nancy klimas can figure out this puzzle and bring out some real treatments that CURE. I really don't know if i can wait another 5-10-20 years?
  18. deadtired

    deadtired Member

    Cfsgeorge....I also often feel that research is missing the "big picture." I was pretty convinced years ago that a retroviral infection made the most sense and still wonder why the research Dr. John Martin on the green monkey virus, a cytopathic spuma virus was never seriously considered. This virus was contaminating the oral polio vaccines for many many years along with lots more , more than 40 other simian virus's. We all know the retrovirus HIV and how it affects the immune system. Perhaps other simian retrovirus's make a hit on the immune system but in less severe and in different ways, causing CFS. All the initial cases would have been caused by the polio vaccines, and later cases from birth , blood, or fluids. Just another theory that is seldom mentioned. The severe cases of mono that were beginning to occur in the 60's may be directly related to some immune deficiency from the vaccines. Epstein Barr before the 60's was usuallly a very mild illness. Lots of CFS occurs after Mono.
  19. cfsgeorge

    cfsgeorge New Member

    Research is still missing the "big picture" for sure even dr teitalbaum admits it in his newest edition. I've read about the retrovirus theory in several books including dr bell's. It seems that it was just left as a theory since not many researchers went ahead with any additional research or papers on it.

    There are just too many possible theories and pathogens to look at. If CFS is an infectious cause, i don't understand why scientist haven't found the pathogen yet after 20years when HIV took only 10 years to find. It shouldn't be difficult to find another retrovirus now. This is what drives me so crazy everytime i read about CFS. Unlimited amounts of theories and papers about everything leading to nothing. We need a super editor and someone at CDC to get research going in the ONE correct direction. Research is everywhere and going nowhere IMO. This has got to be the most complex disease ever! CFS makes AIDS look like pre-school stuff.

    As for vaccines, they are blamed today for autism. dr nicholson says today's vaccines are contaminated with mycoplasma which are not tested for. He believes mycoplasma as a cause for CFS. You can read his papers on mycoplasma or his youtube video about vaccines contaminated with mycoplasma if your'e interested in that theory. it's interesting to watch although i don't know if it's true or not. so confused and brain fogged now.
  20. outofstep

    outofstep Member

    What I meant re: Chia and der Meirleir was that they were smart to be looking in the stomach for a pathogen. That's the one place that no one has really investigated. re: Chia you can just send him slides-you don't actually need to see him for a diagnosis-just have to get an endoscopy and pay for the labwork.

    The problem is that no one has figured out what's causing what and everyone has their pet theories. I also got sick after "mono"-a new EBV infection-but did that start the CFS or was it something else? Was it HHV-6a, since it's relatively rare and found in MS, AIDS, & autism? That's the same question that all of the researchers are grappling with. I think that our best hope for figuring it all out is w/ the WP Institute-they are going about it in a very systematic way and I do think that they'll have answers within 5 years-I definitely want a treatment before then though.