Fatigue and weakness???

Diagnosed with ITP back in May. My counts have been hovering between 45 and 52k. I'm currently doing a 4 day course of prednisone every 4 weeks. I've noticed that whenever the bruising increases, my energy level plummets and I feel weak/tired/brain fog for several days. Both my hematologist and PCP claim that there is no correlation between fatigue and low counts, but I swear it must!! I've also noticed that my symptoms seem to get worse about 7 to 10 days before my period starts. Not sure if there is any connection there. But I have weeks when I feel great and others when I feel awful! It's discouraging to hear both doctors tell me they don't think there's any connection, because then I start worrying that something else may be wrong with me. It just seems to make logical sense that if your body is working extra hard to destroy something, that you would feel tired.

I can always tell when my count is dropping, because I get tired and cold. My doctor says there's no connection, but I definitely think that there is. And when the time of month rolls around, things get worse. I think it's probably normal, and you should just try to get more rest when those times hit.

Snorkel:

Many people say that they feel tired when counts drop. I felt that way when I got below 20k. Above that, I was fine. I always did feel very tired and had brain fog a week before my period, way before I was diagnosed with ITP, so sometimes it's not related.

There are also many people who feel just fine when counts are down. Because low counts do not always = fatigue, it's a good idea not to always assume everything is ITP related because then you could be missing something else that could be wrong. Vitamin deficiencies are quite common for people with autoimmune disorders, so you don't want to overlook that. There is also a chance that other autoimmune disorders may appear. You should try to stay on top of it as much as possible.

I had this routine and for me it turned out to be from freaken lyme disease. I definitely agree with Sandi, it could be caused by other things. My Dr.'s just tagged me with ITP and didn't do much more testing. If you can go to other specialists and see what tests they will run. I should have gone to an infectious disease Dr. a long time ago.

I agree too. I had a lot of fatigue as well as pain in my extremities, which my docs assured me was unrelated to platelets. What they didn't do was investigate the cause. It turned out to be a result of multiple micronutrient deficiencies.

When my count goes down I get tired and hot. My temperature control seems to go way off kilter and I feel hot as soon as I start to do something.

It turned out that I have had a primary immune deficiency all along which might explain some of it but I didn't feel totally exhausted until ITP came along. So something changed.

When you've had Lyme for a long time there's all this controversy over whether or not there's any point in treating you for it longer than the 28 day maximum treatment for someone who has only recently contracted the disease. The CDC says 28 days of antibiotics is all you get. There's a whole other marginalized side of the medical community consisting of Dr.'s who have treated thousands of lyme patients and feel longer courses of treatment are more effective for patients who have had lyme disease for longer periods.

Anyway I'm getting off track of what my point is. In order to get longer term Lyme treatment you have to seek out Dr.'s willing to practice medicine that does not necessarily go by the book. They've developed standard procedures over the many years this has been around but HMO's and insurance companies don't necessarily have to acknowledge that the treatment is necessary. I managed to find an integrative medicine Dr. that takes my insurance and my treatment is being covered so that's not always the case.

You probably don't need all this backstory. Finally my point is that I did go and have a consultation with a Dr. who has a private practice in a swanky office in the city and she doesn't take insurance at all. She provides an itemized bill so I can submit it to my insurance for out-of-network provider reimbursement. She charged $360 an hour and insists on an initial 2 hour consultation. Appointments afterward are maybe an hour if that. This is the kind of Dr. people go to when they have money. I can't afford to see her regularly but I could afford that consultation. All the tests she ran were covered by my insurance. She ran a ton of tests. I wish I had known to seek out some kind of fancy doctor five years ago when I thought I was dying and kept getting bounced around and ignored by the really poor quality healthcare my insurance covered.

Aoi is right. Dr.'s will insist your problem is not your platelets but they won't look any further to figure out what is causing your illness. Here is a link to a blood test order form from Stanford's Chronic Fatigue Center. If you're going to a Dr. and repeatedly complaining of chronic fatigue one would assume they would test you for common viruses and bacteria that could cause an otherwise healthy person to feel like this. Instead it seems if you have an illness that isn't easily identifiable or doesn't kill you quickly like heart disease or cancer you just get categorized as unfortunately sickly and ignored.

The form is from stanford and it is supposedly used to rule out other causes for chronic fatigue so maybe you can convince your Dr. to at least run these additional tests. If anything it will at least give you an experience taking more of an active role in requesting appropriate healthcare from your Dr.. Just be prepared for them to be ridiculously dismissive and annoyed.

chronicfatigue.stanford.edu/docs/CFS-lab-outside.pdf

My mom has lupus and 2 other people in my family have autoimmune diseases. My ANA was negative back in May, but not sure if that's something that can fluctuate often and so it may be positive now.

I feel great and energized some weeks, and others I feel wiped out. And I notice that the onset of the fatigue correlates with the onset of increased bruising, which makes me think it's the low counts causing the tiredness. I also notice that a couple days after stopping the prednisone I start feeling that way. Not sure if it's a "rebound" drop in the counts due to stopping the prednisone. I don't particularly enjoy feeling like that! I go back to the hematologist next month so I'll be a little more aggressive and ask him to investigate further causes...

Tapering and stopping Prednisone can cause fatigue, sometimes extreme.

ANA's can fluctuate, showing negative one time and elevated another time. Steroids and other immunosuppressants can cause the test to be negative.

Fatigue is a very frustrating symptom to bring to the attention of a healtcare professional. I've been told that it's highly non-specific, and without other clinical signs of symptoms, there's little to suggest how to perform an evaluation. The shotgun-like approach suggested in the CFS guide from Stanford is similar to what I did, though going through it all was time-consuming and frustrating.

On the subject of ANA, which I tested negative for a couple of years back, I found the following on LabTestsOnline.org:

Use of a number of drugs, some infections, autoimmune hepatitis and primary biliary cirrhosis as well as other conditions mentioned above can give a positive result for the ANA test. About 3-5% of healthy Caucasians may be positive for ANA, and it may reach as high as 10-37% in healthy individuals over the age of 65 because ANA frequency increases with age.

Since I'm an aging Caucasian male, I may eventually test positive regardless of disease state.