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ITP and pain?

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15 years 5 months ago #4481 by Sorenna1
ITP and pain? was created by Sorenna1
Hello-

If any of you have had pain with your ITP please share what kind of pain it is.

Ever since I was dxed I have had awful pain- it is like fibromialgia pain with a constant pain in the upper right quadrant. Tests showed no trouble in liver or elsewhere, though an ER doc said it could be chron's.

Lots of stomach pain but mostly awful joint and muscle pain- knees, upper back, shoulders....

Has anyone else had bone, muscle pain or other pain?

Thank you and good counts to us all! :-)
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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15 years 5 months ago #4486 by Sandi
Replied by Sandi on topic Re: ITP and pain?
ITP shouldn't cause pain, logically. Some people may experience muscle or joint pain but it shouldn't be severe.

Have you had an ANA done? SED rate? If not, I'd suggest starting there.
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15 years 5 months ago #4506 by Lorie85
Replied by Lorie85 on topic Re:ITP and pain?
I've had pain, mostly joint shoulder elbows ankles. that tends to happen when i get down to 0k i tend to live between 0k and 3 k.
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15 years 5 months ago #4509 by Ann
Replied by Ann on topic Re:ITP and pain?
I have had joint pains as a side effect to one of the drugs I was taking. So not striclty caused by the ITP.
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15 years 4 months ago #4640 by Sorenna1
Replied by Sorenna1 on topic Re:ITP and pain?
Yes, I had lots of test to check for lupus etc. THey once did 6000 dollars worth of tests and they were are crazy wrong. One said I was hemophiliac and had a factor VIII problem, but then I went to a very well known hosptial because I was freaking out and they said I was not hemo and no factor Viii issues!

The only thing they ever find is mildly low platelets but subjectively I have awful leg pain and back pain as well as crushing fatigue. It is very depressing because I used to run.
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15 years 4 months ago #4690 by Beth
Replied by Beth on topic Re:ITP and pain?
For the first 2 months after ITP diagnosis, I was in terrible pain especially in my upper back. It was so bad, my hemo sent me for x-rays, which showed nothing. But it wasn't the ITP or the steroids. My doc told me to take 2 prilosec every day so the steroids wouldn't upset my stomach. Turns out, the prilosec was causing the pain and dizziness and loose bowels (rare side effects listed on the Prilosec website.) I stopped taking it and the misery went away. Just to make sure, I started it up again and the pains came back. My doc said, "hum, I've never heard of that." I think steroids do a number on whatever is normal, so you have to think outside of the box...
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15 years 4 months ago #4693 by NatalieM
Replied by NatalieM on topic Re:ITP and pain?
I have mild body pain from time to time. Nothing excruciating, just what I like to call "growing pains." Sometimes my shoulders will be achy or my back will be a little sore. But...I don't really think much of it because it isn't that bad and it isn't a nuisance. Sometimes certain joints hurt but I chalk it up to different excuses...you know, "I must have slept wrong" or "I need to exercise more..." etc. etc. I like to do that. It makes me less paranoid and worried about it. Just sharing... :-)

Natalie
*Here's to high platelets!*
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