Human Pin Cushion

Hi there. I'm newly diagnosed with ITP after a long year of testing, and they're still not done with me. My Dr. sent me to a Rheumatologist to get tested for Lupus or Fibromyalgia. My fatigue is often debilitating and I'm unable to work anymore. Does anyone know if it is common to have Fibro or Lupus with ITP. I really wish that the diagnosing part was done already, I'm starting to feel like a human pin cushion or a science project of some kind.

Thanks :)

11 Replies

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  • Hi, sorry you are feeling this bad. I was often asked about lupus testing in relation to ITP and I was tested a few times.

  • Hi... what is your platelet count?... until my count is over a constant 40 I suffer from horrible fatigue. I didn't work last year for 9 months... but my count has increased (still up and down like a yo yo)... but I was able to return to work.

    I've been tested for a multitude of things... blood tests... scans... scopes... samples... biopsies... all clear... thankfully.

    The problem with ITP is that everone reacts differently to it... which makes it a bit of a bugger to pinpoint some specific.

    Good luck and hopefully it's not something too serious... x

  • Glad to hear you are doing somewhat better!

  • Are you going to a Hemotologist? if not, you would be wise to do that. You do not mention what your Platelet count is.

  • There must be some link that affects some of us. I was diagnosed with polymyalgia rheumatica whilst weaning off steroids , but was tired even before . Drs said it was still an after effect of the dreaded steroids the first time I managed to get back to 'normal'. My platelets go sky high between drops, but fatigue doesn't seem to relate to this! Hope you feel better soon.

  • I have been tested for Lupus several times over the years, I believe some people can go on to get it but by no means all. Negative so far. Hope you will be too.

  • I am newly diagnosed with ITP and my hematologist has referred me to a rheumatologist also. I went into the hospital with a platelet count of 4,000 a few weeks ago. Now I'm on steroids and have done two rounds of IVIG. I have hardly any fatigue even when I was at a count of 4,000. My blood work did show positive for the lupus marker but I have no symptoms of lupus. My hematologist told me just because you have the marker doesn't mean you have lupus. I think they are just trying to rule it out. I do however have celiac disease. I was diagnosed at 20 months old and have followed a gluten free diet since. I know it is more common to have multiple auto immune diseases. Hope this helps, best of luck and I feel your pain about feeling like a science experiment.

  • I am currently undergoing tests it is very draining and yes feel like a pin cushion : ((( I work full time but I am really struggling my job is very manual just don't know how long I can go on for find the painful joints the worst .

  • I was diagnosed with all 3. Everything for me runs into a pattern. First my lupus will flare up and that is extremely painful and with the flare, my fibromyalgia will also flare. then when im so close to getting these two out the way, My ITP rears its ugly head. my count has sometimes drop so low as to being 1. I am definitely a frequent flyer in the hospital and have come to learn and be friends with most of my doctors. ITP is how i found out i had Lupus. they put me on 100mg of prednisone and i went into a psychosis and i didn't realize it. i was very suicidal. after being weened from it i choose to never take it again. my count didn't drop again until a year later when i had a pretty nasty flare up. and for the last 6 years i have been in the hospital so many times i don't even count anymore. always with extremely low counts. instead of the steriods i get5 rounds of ivig and then do outpatient Rutexin.

  • You poor thing been through the mill havent you ???? At least you have answers and are getting help keep your chin up : )))))

  • Hi, I hear you about the fatigue. I have lupus and also ITP. Although, I have had lupus for 19 years and ITP for about the last 8 years. Lupus or fibromyalgia can cause overwhelming fatigue. Hang in there, I know the diagnostics are exhausting in themselves, and the emotional exhaustion from waiting for results. Keep in touch if you want. Hope you get some answers soon.

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