Polymyositis & Dermatomyositis Support Group
Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.
As some of you know, I was diagnosed with Polymyositis last July. I worked in the healthcare field a few years ago and understand the meaning of the Poly, mo, sitis, pretty well, but I never knew anyone with this illness and had never heard of it. I have done a lot better than my doctor's seem to think I should be doing,
I noticed yesterday, that my legs are stronger. I can stand up without holding onto anything. My stomach cramps are now gone (after taking Cymbalta for a few weeks). But my leg pain never goes away.
A few weeks ago I was on 8 mg of Prednisone per day. My Rheumy had told me to decrease it by 1 mg per week. At the time that he told me to do that I think I was taking 15 mg per day. Well about a week or so ago, I ran out of 1 mg tablets and took just the 5 mg tablet. I have been taking only 5 mg per day since them.
I haven't noticed anything different, so I continue to take just 5 mg per day. I am lucky enough to see my Rheumy, my neurologist and my pain specialist on Monday. Plus I will be having an MRI of my lumbar and bloodwork. I am so lucky...haha. I am blessed though to have health insurance to pay for all of these wonderful visits, plus I started my healthcare reimburse again this month. This is the first time in my life that I am the only person on my insurance plan.
The pain specialist gave me a patch to wear and I didn't feel any improve so it will be nice to see what she will try next. She talked about a spinal implant but my daughter said no. So we will see. I believe that God has done a miracle in my life. At one point I couldn't sit up. I couldn't take a bath. I used a walker. I am so grateful and happy and have plans for my future. We have to believe even during our worst times.
I noticed yesterday, that my legs are stronger. I can stand up without holding onto anything. My stomach cramps are now gone (after taking Cymbalta for a few weeks). But my leg pain never goes away.
A few weeks ago I was on 8 mg of Prednisone per day. My Rheumy had told me to decrease it by 1 mg per week. At the time that he told me to do that I think I was taking 15 mg per day. Well about a week or so ago, I ran out of 1 mg tablets and took just the 5 mg tablet. I have been taking only 5 mg per day since them.
I haven't noticed anything different, so I continue to take just 5 mg per day. I am lucky enough to see my Rheumy, my neurologist and my pain specialist on Monday. Plus I will be having an MRI of my lumbar and bloodwork. I am so lucky...haha. I am blessed though to have health insurance to pay for all of these wonderful visits, plus I started my healthcare reimburse again this month. This is the first time in my life that I am the only person on my insurance plan.
The pain specialist gave me a patch to wear and I didn't feel any improve so it will be nice to see what she will try next. She talked about a spinal implant but my daughter said no. So we will see. I believe that God has done a miracle in my life. At one point I couldn't sit up. I couldn't take a bath. I used a walker. I am so grateful and happy and have plans for my future. We have to believe even during our worst times.
I hope you will find the best solution for your pain. If your daughter has concerns about the spinal implant then check out some other options. I will put in a prayer that you will find a good solution. Keep on swinging the sword of the spirit in regards to your pain. Keep us posted.