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.
brendacaytonwhite
With my lousy memory, I can't remember if I have posted since having the IVIG infusion. It was five days of sitting in a recliner for 6-8 hours while having the blood by product given to me by IV. It was painless, which is a good thing for a body that is full of pain 24/7. There were 2-4 of us each day and for the first two days there was a guy who also has PM. He was a pharmacist when his body was under his control. He had to go on full disability because of PM. He told me that I was the only person he has met that has this illness and he has had it for years. He and another lady who was being treated for a different disease said that the IVIG does give them more strength and helps with the pain, but they have to get it every few weeks. They have been getting it for years. I can't imagine taking a week off work every few weeks to get this treatment. I will because I need it. I am feeling stronger at times and even walked a little further with my grands on Sunday and carried some bags down the stairs yesterday and was able to help my daughter bring bgs up the stairs, something I have not been able to do in the past two years. I am still in a lot of pain, but I think it is because I haven't been taking my pain meds in a timely manner. If I sleep too long and miss the time to take my pain meds I am in pain for hours when I get up. I also have no appetite and forget to take my pills because I forget to eat. It is a cycle and I am more than ready to get off of it. I am taking so much pain medication that I felt like I had overdosed last night, I couldn't keep my eyes open and I was nauseous. My daughter kept telling me to wake up. This stinks.
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