Donating blood question

Discussion in 'Fibromyalgia Main Forum' started by kim840, Sep 25, 2005.

  1. kim840

    kim840 New Member

    I donated blood yesterday for the first time in years. I have FMS and mitralvalve prolapse. When I went to bed last night my MVP really acted up. I am wondering if any others here with both FM and/or MVP have ever donated blood and what their experience was as a result. My iron level was fine. I'm finding myself tired and a bit short of breath today yet. Weird!

    Thanks!

    Always Hopeful
    Marcia
    [This Message was Edited on 09/25/2005]
  2. kim840

    kim840 New Member

    Yes, they take a complete medical history. They looked it up just to double check it and said we were good to go.

    I am feeling more from the MVP than the FM. So I was curious as to if it is a coincidence and it was going to be more problematic anyway or if it was due to donating.

    I guess I'll donte once more in a few weeks and see if it happens again. That will probably give me the the answer.

    My mom has needed quite a bit of blood in the past couple of years so I really want to be able to contribute back into the pool.

    Thanks!

    Always Hopeful,
    Marcia
    [This Message was Edited on 09/25/2005]
  3. Leenerbups

    Leenerbups New Member

    I wish you had asked us first, because this happened to me too. I was seriously ill from giving just one pint of blood.

    I was fine before , but as I was giving the blood I could feel something going wrong inside of me.

    I was ill for a month and missed an important surgery I was supposed to have. It was'nt until I came to the boards that I was told we suffer from low blood volumne, which I did'nt know, and we should never give blood.

    Drinking a lot of fluids and taking iron helped, but it took a while to feel normal. It was scary for a while. I had trouble breathing, dizziness, weakness and heart palpitations.
    [This Message was Edited on 09/25/2005]
  4. kim840

    kim840 New Member

    There's the answer I was looking for. That's just how I feel. I didn't know..... I guess that's the end of my donating which makes me sad. But, I need to be up and running as best I can.

    THANKS!

    Always Hopeful,
    Marcia
  5. Leenerbups

    Leenerbups New Member

    I hope you feel better soon. Your health comes first! Drinking Gatorade and Galcier Smartwater seemed to help me.
  6. CATHYRG

    CATHYRG New Member

    i donated blood for several years before i was diagnosed, as soon as the dr. told me i had a positive ana,he said no more blood donating!
    many of the support groups i have attended through the years people have voiced the thought that posibly we can pass autoimmune disease throught he blood stream??? the question has not beem answered yet? cathyrg
  7. ladybird1

    ladybird1 New Member

    Even before I knew I was diagnosed with fibro and then MVP,
    I always suffered with anemia (since childhood...have a small hemoglobin) so I would be too weak if I donated blood.
    Had heard that it is best not to donate if you have fibro.
  8. Mikie

    Mikie Moderator

    We have had many posts about this over the years. Because 60-70 percent of people with FMS and/or CFIDS test pos. (using more sensitive tests than antibody tests) for stealth pathogens, it is really not a good idea to donate.

    Many blood banks will take blood from people with FMS, but they took blood from people with HIV before they had to stop. No one knows for sure what causes our illnesses and it may not be our infections; they may simply be infections of opportunity.

    On the other hand, if a person is sick enough to need blood, he or she doesn't need an infection. If he or she has genetic defects, it might be possible to get sick with one of our illnesses. I'm not saying this will happen, but even if the chance exists, it just isn't worth it. We should not consider donating our organs either. Donees are given drugs to lower their immunity and this could be dangerous.

    It is noble to want to help, but with our illnesses, we could unknowingly cause harm. No one would ever do this intentionally. I believe the blood banks need to be better informed and more careful about their doners.

    I have valuable plasma and could sell it for much more than the going plasma rate but I would never want ot take the chance of transmitting any part of my illnesses, including the underlying infections.

    I hope you are feeling better. Take care. It was very sweet of you to donate.

    Love, Mikie
  9. kim840

    kim840 New Member

    I'll be calling UBS and cancelling my next donation appt. I will give them the info. you guys have given me and possibly someone in the heirarchy will decide what to do with us. In the meantime, I hope others read this post and do not donate. Good intentions do not always mean good results. I will pray that God will not allow anyone to become ill due to my donation.

    Always Hopeful,
    Marcia
  10. kim840

    kim840 New Member

    Hello All,

    I've had a very low key day. Getting winded pretty easily. I did a little look see on the computer and saw that low blood volume equates to low blood pressure. That would explain how I've felt since yesterday. So, I'm taking your advice......resting and drinking lots of water/gatorade.

    I never thought about donating blood or organs as being bad for the recipients. I was going to be an organ donor but now I see that it may be wisest not to donate with all the unknowns of this illness. Yet another disappointment.

    I so appreciate all the feedback. It's good to let everyone know.

    Always Hopeful,
    Marcia

  11. Juloo

    Juloo Member

    I can't figure that anyone would want MY blood -- full of chronic active Epstein Barr and who knows what else.

    Also, although I've never been diagnosed with it, I probably have hypovolemia (low blood volume) as well. There is supposedly a linkage between blood volume and MVP. The less blood you've got circulating, the 'saggier' the valve. I remember reading somewhere that treating a person for hypovolemia sometimes reduced or eliminated symptoms of MVP.

    If you've got hypovolemia, you'd do better than to donate. You're already asking your body to exist on a reduced capacity -- no sense in diminishing that further.
  12. kim840

    kim840 New Member

    Please tell me more about this hypovolemia. How does one get that diagnosed. What is the test for it. Very interesting...........

    Thanks.

    Always hopeful,
    Marcia
  13. kim840

    kim840 New Member

    Yes, what is that test called and what do they do.

    Thanks
    Marcia
  14. Grailgoddess

    Grailgoddess New Member

    I'm sorry for your bodies' protests. Hugs!
    How unfair when all you were doing was being caring & responsible!

    Thanks for sharing your info & insight; I have been wondering (with no real answers, just common sense) if a person with CFS or FM should donate. You've given us the answer, and probably helped countless people you will never know about. Bless you all!

    Thanks!
  15. kim840

    kim840 New Member

    What is the advantage of knowing this about yourself? I'm sure there are lots of us with this and undiagnosed. Is it important to know this? Other than donating blood.

    Thanks
    Marcia
  16. kim840

    kim840 New Member

    You've been very informative and helpful.

    Thank you so much. It definitely explains some things about myself for me.

    Always Hopeful.
    Marcia
  17. Juloo

    Juloo Member

    Can you tell us what your results were? Do they tell you in liters? Do they give you a comparison -- like whatever-percent of normal? Just curious....
  18. kim840

    kim840 New Member

    As I wrote last Sunday, I donated blood and had an adverse reaction.

    I've had an interesting week. I'm still dealing with some of the consequences and again, advise anyone to avoid donating for all the reasons stated in the responses in this post. I don't want anyone to go through what I'm going through and MORE IMPORTANTLY, we don't want to share this DD with anyone that is out there.

    I'm ok, just needing to pay close attention to what I do. I know this will pass in time, thank goodness!

    Love you guys. And gentle hugs to you all.

    Always Hopeful,
    Marcia
  19. Sheila1366

    Sheila1366 New Member

    I need to change my organ donation information.And I will stay away from giving blood.Glad this was posted.I learn something new here all the time.
  20. rileyearl

    rileyearl New Member

    hope you're feeling better!

    Francie