Hi,

I couldn't find polymyositis (PM) in the forums under Autoimmune or Neuromuscular so I thought I'd make a post in both groups.

Does any have PM? My PCP has suggested this as a possibility for me, but my neuro isn't doing his job and I don't know where to turn. I am hoping someone can tell me about PM and information on how to find a specialist.

Sincerely,
Lindie

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.

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!

When I googled polymyositis I got a ton of references. Most all of them listed pain in the proximal muscles as a symptom.

I had muscle cramping and weakness that I thought was due to my having MS. I went to the neuro and told her I had weakness in my jaw. That meant something to her so she ordered the CPK. It came back high so she started looking at PM. I still think the weakness was MS related because the pain in my leg was different. When I started having pain in my arm I went to my PCP. She said it was typical of PM so I guess pain is a symptom.

I hope you find out what is going on soon. There is nothing worse than knowing something is wrong and not knowing what. It can drive a person crazy.