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.
Hello everyone,
I have posted here before, it has been a while though. I really appreciated the advice you gave me before and I hope you will help me now. I had a biopsy of a rash on the back of my arm a little over a year ago. At that time, my rheumy had sent me to the derm doc and they had talked about the results over the phone and came to the conclusion, according to my rheumy, that it looked like it could be DM. Based on that, my rheumy ordered an MRI of my thigh and that came back negative, and she explained that it could be because I'm already on the meds to treat DM, because I have connective tissue disease and fibro as well.
Time passed and she has since talked about me possibly going to Stanford to be seen by their special rheumatologists, but didn't mention that they specialized in DM, which I have learned and confirmed with her that they indeed do. I am also being seen at Whittemore Peterson up at UNR and that doc said he didn't feel Stanford would have any more answers for me than WPI could offer me at the time. I hadn't received my positive diagnosis of DM yet. That came during my office visit with my rheumy a couple of weeks ago. I had lab work done to check my CPK levels, which were normal. So she thinks it is DM, skin only, not muscular. I disagree. I definitely have muscle weakness and have had it for a long time now. I also am still on meds that treat DM so that would mask the results of tests. My muscle weakness includes not being able to shower while standing for very long at all, having trouble holding my arms above my head long enough to shampoo my hair, which causes pain and terrible fatigue in my arm muscles, having trouble standing for more than a couple of minutes, I even have trouble putting on mascara! Holding the mascara up long enough kills my arms.
I have been having a lot of trouble with edema and it is all over my body now. So, I'm going to be having an echocardiogram done of my heart soon, at my rheumy's request. I'm also on meds for it.
My pain levels have been terrible as well. I have been on my fentanyl patches for a long time now and my pain doc says it may be time to try something different. I'm also taking Oxycodone for breakthrough, as well as Robaxin for muscle relaxer. I'm also on Cymbalta, 60 mg for pain and have been for a long time also. I'm going to my pain doc tomorrow afternoon. Are you on a winning combination of meds that helps with your pain? Do you have any suggestions? What about Methadone? I have a friend who is on that and says it works better for her than the fentanyl.
I would really appreciate any advise or help you can give me. I am glad I finally have a diagnosis that makes sense of my symptoms finally, but I'm also a little scared. Thank you!!
Hugs,
Sheri
I have posted here before, it has been a while though. I really appreciated the advice you gave me before and I hope you will help me now. I had a biopsy of a rash on the back of my arm a little over a year ago. At that time, my rheumy had sent me to the derm doc and they had talked about the results over the phone and came to the conclusion, according to my rheumy, that it looked like it could be DM. Based on that, my rheumy ordered an MRI of my thigh and that came back negative, and she explained that it could be because I'm already on the meds to treat DM, because I have connective tissue disease and fibro as well.
Time passed and she has since talked about me possibly going to Stanford to be seen by their special rheumatologists, but didn't mention that they specialized in DM, which I have learned and confirmed with her that they indeed do. I am also being seen at Whittemore Peterson up at UNR and that doc said he didn't feel Stanford would have any more answers for me than WPI could offer me at the time. I hadn't received my positive diagnosis of DM yet. That came during my office visit with my rheumy a couple of weeks ago. I had lab work done to check my CPK levels, which were normal. So she thinks it is DM, skin only, not muscular. I disagree. I definitely have muscle weakness and have had it for a long time now. I also am still on meds that treat DM so that would mask the results of tests. My muscle weakness includes not being able to shower while standing for very long at all, having trouble holding my arms above my head long enough to shampoo my hair, which causes pain and terrible fatigue in my arm muscles, having trouble standing for more than a couple of minutes, I even have trouble putting on mascara! Holding the mascara up long enough kills my arms.
I have been having a lot of trouble with edema and it is all over my body now. So, I'm going to be having an echocardiogram done of my heart soon, at my rheumy's request. I'm also on meds for it.
My pain levels have been terrible as well. I have been on my fentanyl patches for a long time now and my pain doc says it may be time to try something different. I'm also taking Oxycodone for breakthrough, as well as Robaxin for muscle relaxer. I'm also on Cymbalta, 60 mg for pain and have been for a long time also. I'm going to my pain doc tomorrow afternoon. Are you on a winning combination of meds that helps with your pain? Do you have any suggestions? What about Methadone? I have a friend who is on that and says it works better for her than the fentanyl.
I would really appreciate any advise or help you can give me. I am glad I finally have a diagnosis that makes sense of my symptoms finally, but I'm also a little scared. Thank you!!
Hugs,
Sheri
Ask anything else you want, but i am a fan. Shawna
Your doctors will give you things to help with the skin, pain and muscle weakness.
I think the most important thing is to relax and be patient with yourself. The beginning of DM is usually the hard part. Once the disease has some control, you will feel better. You will eventually get strength back. I totally relate to being scared. Things will get a lot better for you with the right meds.
The Myositis Association website has a lot to offer. There are research papers, medication, and autoantibody information that is helpful to read. That site also has a nice support group too. Be sure to look up the Myositis Association because it is helpful. Keep us posted!