MALEN I am sorry but I've been told Not to

Discussion in 'Fibromyalgia Main Forum' started by carebelle, Jul 15, 2006.

  1. carebelle

    carebelle New Member

    My Doctors have told me not to donate blood because I have FM/CFS I really wish someone would get this information out and find out whats true.For everyone.

  2. wildflowers2

    wildflowers2 New Member

    My cfs/fm Dr told me the same thing. you cant give blood.

  3. minimonkey

    minimonkey New Member

    I think this is probably good advice, sadly. Since no one really knows exactly what causes FMS/CFIDS for sure, no one can say whether it is transmissible or not. Certainly CFS tends to appear in clusters, so there is some real evidence of an infectious agent.

    I found out that my FMS symptoms were caused by Lyme, and I had to remove the donor card from my wallet -- a very sad day, as I have always felt very strongly about being an organ donor -- but there is too much evidence that Lyme can be passed this way.

    Now, I think I may just donate my body to research when I am gone -- that way, maybe I can help other sick folks in a different way.
  4. sometimes I think that is how I GOT FIBRO, from someone's blood I was given during surgery. Of course back then we just did it, no worry. Nowdays they make you donate your own, and check it thoroughly , although they can't ck. for everything can they.
  5. carebelle

    carebelle New Member

  6. Malen

    Malen New Member

    Did your doc tell you that due to meds you're on?

    I asked the people working at the blood drive, including the doctor, he asked what meds I was on (none, but I did tell him the natural suppliments I was on) and he okay-ed it.

    Could be you have a prescription med that is not compatable with donation, or an active virus in your body (again, I've been tested and no EBV in my blood).

    They also allowed a woman who had previously had Lyme disease to donate sionce she's now been cleared of it.
  7. mrdad

    mrdad New Member


    I also suspect that my CfS could have been caused
    by a Transfusion during surgery. But I have other poss.
    also.

    Have a good day!
    MRDAD
    [This Message was Edited on 07/20/2006]
  8. Greenbean7

    Greenbean7 New Member

    Sometimes they will take blood that is designated for lab research work only.

    We did blood drawings at a place I worked. They had each of us fill out a form (while standing in a booth like a voting booth so no one could see what you wrote, or that you wrote anything) that asked if there was a reason why the blood should not be used. It was confidential and only identified by the number they use on the blood units.

    This kept people who would otherwise not be giving blood for use as transfusions from being embarressed or singled out by the people they worked with.

    I believe you can still do that, but I'm not sure. They do need blood for research.

    Hugzz
    Greenbean

    Stop and smell the puppies!
  9. Malen

    Malen New Member

    People definitely need to communicate if they donate blood, no matter who they are (CFS/Fibro sufferer or not).

    I'm curious though that if they people that were told they can't donate blood due to the risk of passing it on (if indeed it has a viral cause) have been told to have safe sex or not have children? After all, if you have a virus in your blood that can be transmitted, if will also be possible to tranmit to a sexual partner or a in-utero child.

    If they haven't been told that, I would think they Docs are telling them they can't donate for other reasons.
  10. sues1

    sues1 New Member

    I have been told that I can not give blood because they do not know what causes Fibro/Cfids. So it is still risky to pass on something unknown, if there is a possibility.

    I have never had a blood transfusion.


    Susan
  11. carebelle

    carebelle New Member

    I was told it was for my own safty and the safty of others because not enough is really known.

    I also had two transfustion after a childbirth.
    But to be honest I feel I have had this sence I was a teen.Its just gotten worse with time.