Hereditory or not?

My son's is diagnosed with Fibromyalgia like me, but has other autoimmune problems. He gets very, very ill if he has a virus, has icepick headache, very bad vertigo and goes faint a lot, is tired all the time, has NASH liver, endocrine problems and skin rejection at his extremities.

Recently, I found out that I may, or may not have post Lyme disease syndrome, instead of, or as well as Fibromyalgia, and seen as he has never been bitten by a tick but I have, a Fibromyalgia hereditary tendency seems slightly less likely. I suppose there could still be a tendency, though his was triggered by glandular fever?

Diagnosis of Fibromyalgia seems to be a matter of saying - "we don't really know what is wrong, though we do know there is something genuinely very wrong, with certain brain function differences back this up" So it is called Fibromyalgia, and we must go away and see if something else happens to contradict, or shed light upon this diagnosis.

I understand that doctors and researchers can't know everything, and often have to just treat the symptoms, but knowing that doesn’t help us to feel reassured that some other important aspect of our health isn't going seriously wrong in the meantime. It is depressing enough when it happens to you, but when it happens to your children too - and there is still no better explanation!

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  • I think the accepted rule is that it is not hereditary, but there are many fibromites here who would beg to differ and have several members of their family who suffer from it.

    Fibro can accompany many other conditions, a lot of them autoimmune, and it is known that they tend to be hereditary, so perhaps the link is there.

    Research is being carried out and the results can't come quick enough!

    X

  • Hi bluebell99, thank you for your reply, I see how the link may be autoimmune based, yes and following that, Lyme and Glandular fever might just have been autoimmune triggers. I have been getting hell from my husband lately, telling me that it was letting the doctor give my son too many antibiotics when he was a child that did it. I can't discount that as a factor either, but I suppose that where there is uncertainty there will always be all manner of specific doubts. Yes, the results of research will help, what ever those results turn out to be.

    X

  • Hi dinahdabble

    I am so genuinely sorry to read that both you and your son are suffering and struggling so much. I have a personal opinion (without my FMA UK hat on), and this is that too many people are being diagnosed with Fibro when they do not have it. If a patient presents constantly at their doctors with multiple pain issues, then eventually (I believe) there is a good probability of getting a Fibro diagnosis after many tests are undertaken but there will always be tests missing that may lead to the real cause of the illness/es?

    However, despite saying all of this, according to *NHS Choices there is some evidence pointing to a genetic link. I have paste the excerpt below:

    *Genetics

    Research has suggested that genetics may play a small part in the development of fibromyalgia, with some people perhaps more likely than others to develop the condition because of their genes.

    If this is the case, genetics could explain why many people develop fibromyalgia after some sort of trigger.

    I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you

    Ken

  • Thank you for looking that up for me Ken, and for your kind words.

    I think it may be right that there are people who's genetic make up means that they react more strongly to some infections, and their immune systems are more likely to be permanently compromised. But again you are right, this shouldn't mean that they are simply given a Fibromyalgia diagnoses because it is the easiest option for the moment. I suppose it is really down to prioritising scarce NHS resources.

    Maybe in the future, technological systems will become available that are able to specifically compare and analyse family medical data in a more systematic way.

    Thank you again,

    X Dinah

  • Thanks dinahdabble it would be wonderful if a genetic pattern could enable doctors to use preventative treatments prior to contracting an illness, and nobody would have to get sick? Mind you, the cost of setting something like this up would be tremendous? Good luck my friend.

    All my hopes and dreams for you

    Ken x

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