Quote:
Originally Posted by knittenkitten
I responded to you before but I can't find it now. Sorry.
I have PM. It started as a terrible ache in the muscle in my left thigh. My CPK was high so I had a biopsy. I started on low dose prednisone but it made my blood pressure and blood sugar soar. So, I am off meds and my CPK is higher than ever. I have an appointment with a reumy in November. I don't know what he will do but I'll see. They tell me there is a PM specialisit in Rochester, NY which is not too far. If I need to I'll go see him.
The thing is, right now I feel mostly fine. The pain in my leg is gone. I have a nagging pain in my right arm but it is getting better. I can live with how I feel. I don't know if a high CPK is dangerous. If not I'd just as soon let it go.
Write back and let me know how you are doing, please.
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Hi knittenkitten!
Thanks for your response. Sorry it has taken me so long to get back. This forum doesn't notify you when someone has commented on your post so it takes diligence to check everyday and unfortunately, I don't always have the strength to do that.
I am so sorry to hear about your pain! Is pain a common symptom of PM? I do get achy muscles, but I believe it is after I have used them too much. I had my CPK check in May and it was fine. My Sed rate was also fine. The main thing for me is this terrible weakness. I wake up feeling pretty good, but as the day wears on I get weaker and weaker. Then I have severe weakness that can be triggered by certain things--like illness. Does this make sense with PM?
The doctors all keep telling me--"I have no idea what this is!" and then drop me like a hot potato. I'm tired of being sick and I'm tired of this diagnosis nightmare. I'm so glad that at least you have a diagnosis and hopefully the NY doc can give you some good treatments that will get you in the best of health once again!
Keep in touch!