ITP with extreme fatigue and muscle pain??

After having doctors always "notice" my low platelet count since high school, I was finally diagnosed with ITP after having every single test done on me...including the always fun bone marrow aspiration. My count hasn't dropped so low as to need treatment, but I have noticed that when my count drops below my normal range of 75-90, I get EXTREMELY tired and have severe muscle pain in my neck and shoulders. I've gone to doctor about this and have been sent for additional tests including MRI, scoliosis and then to PT when nothing "abnormal" showed up because apparently it must be my posture. (but magically my posture must get better when my platelets go up because the pain goes away...yeah that makes sense) I've been told that fatigue and muscle aches are not symptoms but I can't help but wonder if it is because its too much of a coincidence. I have almost no energy and am usually at the gym every day otherwise. I hate feeling like this and then to not know why is even worse! Does anyone else have this issue?? I'm sick and tired of feeling sick and tired

Hi Felita:

Some people do report having fatigue and other symptoms along with ITP, but I tend to believe that there may be other things going on. I had neck and shoulder problems long before ITP and have found a few reasons why. Stress, loss of C curve, and lately, herniated disks have been some of my problems. The only way it could have ever been connected to ITP in my case was that I was stressing over counts and tightened up. I did feel fatigue when counts were down, but not until I got below 20 or so. I know everyone is different in that regard though.

Have you had any thyroid tests or common Lupus screening tests like the ANA? Has anyone ever considered fibromyalgia?

I've literally had every test you can think of....My internalist is very thorough. Come in with a headache and you'll leave with 5 referrals to 5 different specialist to find out what the issue is. I've looked up Fibromyalgia before and my symptoms don't seem to match....the pain is solely in my neck and shoulders and that and the fatigue only seem to occur when my count drops...hence my "conclusion". The pain and fatigue just get to the point where it interfers drastically with normal life. I just want to dose up on pain meds and curl up and sleep all day. I just want to feel better...is that too much to ask? I feel like I am in a battle with my own body. Ugh

I have very similar problems but I also do have other diagnoses (Lupus is one). I really don't think that severe shoulder and neck pain is related to ITP. Sometimes a diagnosis can take time as some disorders develop very slowly. It could be that your ITP flares up when the other undiagnosed disorder does. I'm just throwing ideas out there.

Is there something that you do differently when you learn that your count is down? Stop exercising, sleep more, etc? It could be the different activity you do that causes it.