Thought I'd pass this information on

Although many people that suffer from Fibro wouldn't even contemplate having children, many women do still think about what could have been etc.. This year I was referred to see a community pain management centre, very helpful for me and people that suffer from Fibro and I would recommend if you haven't been referred to go and get yourself referred. Anyway whilst I was there I was asked if I have children and when they were born I.e before or after I had fibro. Reason being if you are to have children after you've been diagnosed with fibro there's a 50/50 chance you will pass it to your unborn baby and it will suffer like you for all its life. This is rather horrid if that were to happen so I'd thought I'd pas it on. Luckily my kids were all born beforehand which was an immense relief.

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  • I've heard that there is a genetic link -- or at least a susceptibility -- but I didn't know there was any research done to come up with such figures! So I'm skeptical of this and I'd like to see the research!

  • I agree with Meloha, though I think fybro is hereditary my Mum and several Aunts had it , I'd like to see the research on this if it is true I really don't think it would stop me having children, there are many women with far worse life threatening illnesses who decide to have a family, frankly I find it hard to believe.

  • Id be interested if you find anything out plz do let me know.

  • Recent research seems to suggests a genetic component but of course until they do very large studies over many years I don't think at the moment there is absolute concrete evidence of this. I do think from reading alot of articles that there are many things about genetics we are still discovering so I think there might be a factor there that makes one more likely to get things like RA, osteo or fibro. There are already tests they can do for other diseases like Huntingdon's Chorea so why not fibro in the future. The disorder is often seen in families, among siblings, or mothers and their children so I don't think this is a coincidence. I am not sure fibro is quite as clear cut as some problems as even reading the posts on the forum you can see that often people who seemed perfectly fit have developed fibro after a najor operation, trauma or after being out under extreme stress so I think there are many factors involved.

    I do think if someone really wants children they should go ahead as long as they know that there will be someone there who can step in on those "bad days" when we know we are incapable of doing very much. As Armetryp has said the are marvellous Mom's out there who have far worse illnesses to contend with a still somehow manage.

    I often think children are more flexible that we realise in adapting to things but I for one would not have knowingly brought a child into the world if I thought I was going to be dependent any time soon for that child to be my sole carer. I have unfortunately seen this happen with a couple of people I know and it has really blighted their childhood. Whereas I have seen children born to someone who has an illness but has an extended family pitching in who actually seems to have become really rounded happy person as they have a kindness bred from helping their parent out when necessary.

    Not a quandry that is going to happen to me fortunately but everything in life if we really think about it is a stab in the dark.x

  • I have never been able to have children 😢 i have never found out the reason why my 2 sisters havent been able to have children either. I have a stepdaughter and plenty of neices and nephews. Xx

  • Hi

    I am highly sceptical of this advice.

    We do not know what triggers Fibro or why it presents so differently in everyone. How on earth would we know this precise figure of a 50/50 chance of it being passed on?

    I agree that some people have family members that suffer with Fibro, but again where is the research on this?

    Sorry, but I really don't agree with this. Just my personal opinion.

    Lu

    Volunteer Adminstrator

  • I do believe it can run in family as both me and my sister have it.I don't know about 50/50 sounds a little to high.Stranger things have happened I guess, right???? Peck ✌

  • I had thought that there may be a genetic factor until I saw a brilliant Physio. We talked for and hour and a quarter. One of the subjects which came up was genetics. This guy had specialised in fibro at the Royal Bath Rheumatology Hospital, had lots of experience and research behind him. It was his opinion that there was no genetic link and in his professional capacity he'd not heard of any research indicating that there was. Again in his vast experience he believed that families of someone with fibro may have other members who had 'learned behaviour'.

    I'm inclined to agree.

  • Learned behaviour? How strange 😟

  • I agree with blue mermaid 3 and I can't even get my head around the fact we are even discussing it, i think fibro is hard enough to live with but for someone in the medical profession to even suggest without any proof that we could have passed this horrible illness on to our beloved children is disgusting.

  • There was no hint of Fibro in any of my family on either side.

    I am a one off. :P

  • That is horrifying to read but it is difficult to believe that it is a 50/50 chance? The ratio there is huge? After my diagnosis I thought to myself that my mum had Fibro as for all of her adult life she had constant pain in her body and suffered with horrendous fatigue. Sadly, I lost her a long, long time ago and we had never heard of Fibro at the time.

    All my hopes and dreams for you

    Ken

  • I have had Fibro since I was 15, I am 52 now, I was only diagnosed in 2000. My mother & sister have arthritis in their knees & shoulder as I do, I have had 7 knee operations eventually having my knee caps removed in 1996, something that my mother took me to the gp about when I was 5 and was told she was s paranoid mother. For many years I have seen symptoms of Fibro in both my mother & sister, my mother gp has diagnosed Fibro although she has no idea I have it. To say that if family members, most often the female maternal family members, have learnt behaviour I find to be very insulting, my sister & mother have developed Fibro or had it finally recognised, in their adult life & both think they haven't got Fibro although there is a huge weight of experienced medical persons & myself who can see many of the symptoms in them. I also know a lot of female Fibro friends whose mothers sisters daughters have been diagnosed also. I know everyone is entitled to their opinion, but sometimes the way people word things can cause distress & insult. 1 man who has worked within the Fibro medical area cannot say definitively this or that in Fibro, it is hard enough for us to cope with this condition ourselves with battles with medical staff, some people have family & friends to have to battle with also, I don't think we need it from within the group also.

    I chose not to have a family mostly for health reasons, but some other reasons also, but never once thought that I could give a child this condition there are far too many variables in people their health their conditions to think like that, I was once told by a consultant to go away and get pregnant and this would stop me worrying about pain etc, a week later my legs collapsed while I was out & as a result had to have both my knee caps removed, this really helped with my bone type pain but sadly the nerve muscle tendon pain got worse, I was eventually diagnosed with Fibro in 2000 & had seen many of my health problems in both my mom & sister during that time even though I had never heard of Fibro before my diagnosis

  • As someone who was diagnosed at 15, there was no chance for me to have had a family before being diagnosed. So this is something I have always had to think about.

    I am 12weeks pregnant now & the thought of passing on FM is horrible. It is something I considered greatly before deciding to try. The grief of thinking I would never have a child of my own outweighed the possible risk of passing FM to my child, in then end. It does make me sad that I will always be on the look out, crossing my fingers, but this child has already brought so much joy to my family. That is all I could ever hope for, to live a full, rich life with joy as well as pain Xx

  • Lolis, 

    Please, please, please enjoy your pregnancy! And then enjoy your baby! 

    My mum died in October 2014 after suffering pain, fatigue and mobility problems that she was constantly told were caused by a@[] she had when she was 58 yrs. She was 89 when she died. 

    My 7+ years of 'ostheoatrthritis' was finally diagnosed as Fibro in Jan 2015 and it was only then that I recognised that my mum's collective symptoms were also most likely undiagnosed fibro. 

    My point is that my mum had 5 kids and only one of us has fibro - so chances are that your child will be a beautiful, happy healthy individual and I wish you every joy x

  • Hi Maggi, thank you that is very kind of you. I am sorry to hear that your mum suffered so much with no support from the medical collective, that is very hard. I hope you have lots of lovely memories to hold on to.

    I think I will always live with the worry & guilt of being a disabled parent, just that I want to give them everything and know I cant be perfect. I have to accept that, but my husband is lovely & both families are thrilled. So Im glad they will have two sets of excited, loving grandparents to play with them and take them places when I cant.

    I hope you had a good Easter, take care Xx

  • Congratulations on your baby, i hope you have as pain free a pregnancy as possible and put all the bad thoughts out of your minds.think of all the people with heart problems etc if they all stopped having children in case the children had problems we would have a smaller and sadder population enjoy your pregnancy and enjoy getting spoilt xx👍

  • Hi Rosie, thank you :) I am doing my best! Ive had a textbook pregnancy so far, I cant complain. Obviously on top of FM it is proving very much hard work. My husband is very pleased about the forth coming sproglet, and more than pulling his weight (I still cant get a back massage for love nor money :P)

    I hope you had a good Easter, Take care Xx

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