Discussion in 'Fibromyalgia Main Forum' started by bunnyfluff, Mar 19, 2006.

  1. bunnyfluff

    bunnyfluff Member

    My problems started shortly after receiving 2 units of blood. CFS/FMS people are not SUPPOSED to give blood, or donate organs, but there is no mechanism in place to keep them from doing so. Also, of course, no screening for it.

    With so many CFS/FMS undiagnosed or underdiagnosed, and a report I read where it is possible to get it from blood, I was wondering how many others here have gotten any blood any time in the past.

    Just curious.
  2. MamaDove

    MamaDove New Member

    During oophorectomy in 1993, when my problems began soon after...I also had an infection in the incision area during the hospital stay...The fatigue started and never went away...

    I remember my docs here in Maine questioning my symptoms which had worsened after a neck injury, and decided to rule out HIV from the transfusion...The surgery was done in NY and my docs here were concerned about the blood supply at that time...The anxiety waiting for that test was something I choose to forget...

    I am just now thinking about the transfusion as the cause of my initial problem...Certainly my neck injury and other issues have contributed to the 'progression' of these dd's.

    Great question Bunny, especially when I am now researching this...

  3. elsa

    elsa New Member

    In 1998 I was pretty sick and in the hospital ... I had two units of whole blood. On top of that I had interferon treatments for liver inflammation of unknown causes .... Turns out I probably have been a classic example of Dr.Chaney's 3 Phases of CFIDS all along ....

    My symptoms showed up soon after ... well, my recovery time for the acute illness was about a year, but I noticed after that that the muscle pain and fatigue never let up completely. That's when I mark the start of CFS/FMS symptoms.

    I am very angry over the major blood banks handling of this ... it took them years and serious threats to finally test their blood products for HIV .... Their problem .. All of them .... was the huge cost to implement such testing .... said they couldn't afford the millions of $$ to do such testing.

    Before anyone gets angry at greedy corps or wicked government ... AM Red Cross, for example, is a not for profit, private entity that is not related to government. They have a form ASKING if you have CFS/FMS .... that is their only precaution .... no testing.

    There are some inherent problems ... 95% of the American population will have anti-bodies to EBV so that simple test they argue would be useless. It is more specific tests that will show whether the pathogen has been upregulated / reactivated / back being active ... whatever you want to call it .... They would prefer not to run this test.

    Their other arguement is that with no known cause, they cannot afford to run every pathogen test that may be related to CFS/FMS. Remember though, it was not until hemopheliacs were dying from HIV/AIDS ( not the huge numbers of other groups passing on) that the major blood bank groups "found a way" to afford to test for the HIV pathogen.

    The hemopheliac population were a direct link of HIV/AIDS and blood bank blood products .... they needed blood transfusions to sustain life ... How ironic is that? Ryan White was probably the most recognizable name connected to this stuggle.

    I cannot wrap my mind around the numbers of individuals that will potentially end up with CFS/FMS because of a set of people whose job is securing the "bottom line" have not been "made" to see the error of their actions.

    I imagine it will take two things to change the status of blood testing ... 1. a causative pathogen identified, and / or 2. CFIDS evolves into a life threatening illness ( which I don't see happening )....

    I am sorry for going on a rant with this ..... I cannot blame all my ills on a blood transfusion ... But I can hold them accountable for some of it ...

    If you follow Chaney's 3 phases theory ... I had to be susceptable in the first place. Also, interferon causes CFS in a % of patients that undergo treatment. Lastly, in an effort to protect my liver from any future problems, I had the hep a and hep B vaccines .... They have a % of causing CFS like symptoms .... although I do not know how strong the evidence is to support this.

    So you see ... several things had to happen for me to end up with CFS/FMS ... in my opinion, blood transfusions had a hand in increasing the odds of my walking away with this chronic illness.

    The flip side of course is that I may not have recovered at all without it ... so, it is a double edged sword.

    Interesting topic ... thank you for posting it ....


  4. foxglove9922

    foxglove9922 New Member

    I had a blood transfusion in 1982, my first bout of CFS wasn't until 1993.
  5. hugs4evry1

    hugs4evry1 New Member

    I can't even count how many bags of blood I've been given through the years, but I do know that when I had my daughter in 1986 I needed 8 bags of blood that time alone.

    That was back before it was tested for much of anything and sometimes when I think about it, I do wonder if it could have been tainted.

    Nancy B.
  6. bunnyfluff

    bunnyfluff Member

    There must be more of you out there......
  7. fairydust39

    fairydust39 New Member

    I had many many blood transfusions in the past. I had UC for 30 years and would have as many as 7 pints at one time.
    I don't have UC any more but I could have been infected with about anything. Don't know.I know I've had Fibro for a long time but wasn't DX'ED with it until about 5 yrs. ago.
    Hugs Shirley
  8. Toga

    Toga Member

    I received two units of blood preceeding a Hystorectomy (sp?) on July 11, 1996.

    I have thought of the possibility of getting "something" from that blood but there was no other option. My blood count was way down and I had to get that operation or bleed to death and they couldn't operate until the transfusions.

    It took eight hours for them to get a line in because my veins were so flat. I often think that if I had been smarter I would had my husband donate some blood for me in advance. He is the same type as I am. But I was so weak and stupid for weeks before the surgery. I couldn't think straight.

    I've not felt well since. I kept waiting to recover. But then again I had severe migraine headaches from 1969 until that surgery. I always thought that meant I had it FM earlier and it took a long time before the other symtoms to show up.

    Who knows? But I wish I did.

  9. littlebrownwren

    littlebrownwren New Member

    I received 4 pints of blood in 1987 during my last back surgery.

    It seems my fibro symptoms began after that time.

  10. Beadlady

    Beadlady Member

    when I was born. My mother had Rh negative blood,

    It turned that my uncle finally had the right blood for me.
  11. rosemarie

    rosemarie Member

    I had blood after my tosils were taken out and I devlpoed antibioic induced colitis and was given at least 4 units then, later on after I was married I had retrograde menstratation which is bleeding from my tubes in to the abdomen. I was given 3 units one day and another 2 the next day. so I have had alot of blood. I also have had some symptoms of fibro all of my life. So I don't know if the blood transfusions had anything to do with my having fibro. I only remember that during the transfusions that I was so sleepy that I slept and slept all day everyday, for days after them, I don't know if it is from the being so low in iron or if it was the begining of the fibro.
  12. sues1

    sues1 New Member

    I have never had a blood transfusion. From the time my children were tiny, My Dr. would say to not donate blood because you need to keep what you have. I always wanted to donate, (before illness) but never did.

    I was stunned that it was stated that the AM Red Cross uses a questionaire...that asks like "Do you have HIV/AIDS"..?...many would think they did not and donate.

    Is this still true? Scary.
  13. greatgran

    greatgran Member

    I had 2 blood transfusions in 1994 and broke out in one heck of a rash that was horrible..For years the rash would come and go. I had been rash free for about three years until a few months ago and it is back, on my legs and drives me crazy with the itching...I feel sure that the transfusion had something to do with the rash but doctors have no answers.

    I first started having symptoms of cfs in 2000 not sure if there is a connection or not..

    God Bless,
  14. Staceymarie

    Staceymarie New Member

    Forgive me please....I know that I had to receive blood as a child for a head injury, but is that considered a "Blood transfusion??"
  15. bunnyfluff

    bunnyfluff Member

    If you get any blood or blood "product" that is a blood transfusion.

    An article I read said that 34% of CFS sufferers in a control group had gotten blood in the past. A much larger group had worked in the health industry in the past.
  16. kdeenak

    kdeenak New Member

    I had a popliteal artery aneursym in my right leg and had to have a bypass in 1998. I received a transfusion at that time.

    I started having FM symptoms in the Winter of 1999 after stomach flu/influenza as best I can tell.

  17. elsa

    elsa New Member

    The Red Cross does present a questionaire prior to someone becoming a donor .... general information and other questions that may lead them to be turned down at that time for blood donation ...

    IE,... "Have you been out of the country in the last 60 days? If so where? Have you been to South America?" (This is an indicator for possible maleria.) They might follow the travel questions up with "Did you take any medications, or vaccinations for preventative measures prior to travel?" ... IE Prevention of maleria(sp). The questionaire will also have questions on it concerning CFS.

    As for HIV/AIDS .... You really don't need to worry about that. The HIV references I made earlier concerned ALL the blood bank's practices during the 1980 - 1985 time frame .... not present day practices.

    The American Red Cross tests for HIV, HepB, HepC and others. Surely you didn't think that a blood test in that common use today for HIV detection in patients was not also used for HIV detection in the blood supply?

    I have been distressed over the possible passing on of pathogens that cause CFS ... problem is, no one knows what pathogen is directly responsible for CFS/FMS ... very difficult to test for something that is unknown.

    To this point the only thing the major blood banks can do is ask on the questionaire if you have been diagnosed with CFS/FMS ....

    That or run on each batch of donated blood the same infectious panel the FFC does ... which is huge .... and costly.

    It's a catchey situtation at the moment ... one I hope answers and testing methods can be applied to soon.

    Hope that helps .... The blood banks have been testing for the major infectious bloodbourne pathogens for a while now .... American red Cross included ... No HIV accepted in case you were worried ....

    Take care,

  18. carebelle

    carebelle New Member

    we have discused this several times over the years here .I had 2 blood transfustions 27 years ago.
    I do not give blood because my Doctors have told me not to
  19. caffey

    caffey New Member

    I had a blood transfusion approx. 2 years ago. I just developed fms 2 months agao. I was told it is related to ra.
  20. TerryS

    TerryS Member

    I had one in 1979.

[ advertisement ]