Hi y’all. Quick background: I was diagnosed with ITP in 2015 (age 26). I was 6 weeks postpartum with my second child and covered in bruises at my appointment. Platelet count was 16. (I apparently delivered with a platelet count of 30 and the lab didn’t catch it.) I did a course of prednisone and weekly blood draws until I stabled out. My count now lives around 50-78. I successfully had my third child in 2017 and thanks to prednisone had a 100% safe delivery and my platelet count is currently 69.
After my second child was born I suddenly developed a multitude of awful aches and pains and gastrointestinal upsets and after two years of tests we discovered I have MTHFR (heterozygous compound) and Celiac disease. I have been gluten free since then and was told it would make all my aches and pains go away....but it’s getting worse.
Last year, in September, I developed a pain in my left hip, femur, and knee that was coming and going, and at the time could best be described as it feeling like hot water was sitting in my bones. X-ray showed no weirdness and my RA tests and lupus tests are negative. My husband switched jobs shortly after my X-ray and we lost our insurance for about 8 months. In that time, my leg has been consistently aching day in and day out. It has now progressed into my shin and my ankle as well as my knee, femur, and hip. It’s a constant “it’s there” kind of ache. Now, I also get sudden and violent pains that feel like an ogre is trying to crush my bones with his hand. (Vivid, right?) It will pass in a matter of moments and return to a simple ache. I told my doctor and she sent me for an inflammation test which I haven’t received results from yet. However, yesterday I developed a limp because my hip feels like it’s going to snap when I walk and it’s made my gait shallower than normal. I have also developed a “tv static” feeling and pins and needles on occasion whether I’m standing, driving, walking, or sleeping. It’s random and I cant pinpoint why it happens. The pain is now also waking me up at night and I’m incredibly confused.
I’m just curious if anyone else has experienced anything like this and if it’s a normal “autoimmune” type inflammation. So far, everything we ever test on is incredibly unremarkable and nothing that leads us to look elsewhere. I’ve never had this type of pain before and I’m worried. I’m not even 30 yet (although I will be soon) and I’m a very healthy and active person and try to eat well. I never had issues before until my crash after having my second kid, so I’m still adjusting to life in the autoimmune world.
Sestrada I have never heard of anything like that being associated with ITP - but I don't know everything.
Isn't chronic pain one of the side effects of MTHFR (heterozygous compound) - could that be the cause of what is going on with you? Are you seeing a specialist or your PCP for this?
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
Hey, the MTHFR thing is super confusing to me and doctors apparently. When my doctor diagnosed me a few years back she basically told me “take methylated vitamins and it will help.” And that was the end of discussion. I started methylated B12 and folate and made sure that I ate well. My other doctors seem to have little to no interest in the MTHFR as a cause of anything other than poor folate and b12 absorption.
I am not seeing a specialist as of yet. I just had my first meeting with my new PCP on the 3rd. I went in two days ago for more blood work- again to check for inflammation. My new doctor doesn’t seem to have any idea of where to go from here. She asked for my old tests from my previous doctors, but I haven’t heard any other test ideas or theories.
I figured it would be worth a shot to just ask if anyone has any experience with this. I feel like I’m crazy sometimes because I’ve done everything to “get better and reduce inflammation” as the doctors and nutritionists have told me and it’s not changing anything.
I’ll definitely look more into MTHFR and see if there’s a link there. Thanks so much for piping in!
Are you still on pred or other steroids? Any current treatment for the ITP? I am not an ITP patient, but mom to an adult who had ITP as a teen. I felt that sort of pain while decreasing the dosage during a short course of steroids for another ailment. Felt as if something was crushing my bones. Also, how long did you stay on steroids?
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