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 talked to my Dermatologist today and told him my nightmarish ordeal with my new Rheumatologist last week. I told him, I would not be going back to her EVER!! He pushed my prednisone back up to 60mg. I told him I will be seeing the NP in rheumatology that I used to see and he told me to tell her to get me in with one of the doctors in her clinic and if she wouldn't to call his office right away and he would personally call her. I have heard really good things about her so hopefully things are on the right track. It has been a nightmare just trying to find someone to even listen to me. Anyway I'll let you know how it goes. I will be seeing her Wed.
My question is do any of you have insomnia? I have been researching everything I can on DM. I have come a crossed a some articles that do say it can be a side effect but it doesn't seem to be one of the main ones. At least not from what I have read. My Derm says it is. Just wanted some feedback. If anyone does suffer from this, just wanting to know what you do about it. I have been suffering from this for a few years, but it has gotten dramatically worse. Last month I went 2 days at a time without sleeping and I did that several times. I used to take Ambien and it worked at first but after time I would wake up at 3 a.m like clockwork and not go back to sleep. I also started reading about how bad Ambien is for you so I weened myself of it. I try everything, relaxation techniques, etc.. Couldn't tell you the last time I got a good nights sleep or woke up feeling rested. Just wanted some input.
The other thing I have noticed that has gotten dramatically worse over the last several months is my eyesight. I thought nothing of it at first. I am 44, but I have never worn glasses. At first I just needed them for reading, but now I notice it is continually getting worse. I literally cannot read any small print and things are often blurry. My eyes are always blood shot looking and kind of glassy. Any thoughts??? I am a single mom with no vision insurance..
My voice has also deepened quite a bit over the last year or two. I have read that can happen with DM. I get hoarse a lot, especially the more I talk and at times if I try to sing along to the radio, omg, it sounds like snap, crackle, pop!! I often get called sir on the phone.. Do any of you experience that?? Sorry about all the questions. This is all so new to me. Most of you seem so knowledgeable about this horrifying disease and I am just trying to learn all I can...
Thanks for all your help :)
I talked to my Dermatologist today and told him my nightmarish ordeal with my new Rheumatologist last week. I told him, I would not be going back to her EVER!! He pushed my prednisone back up to 60mg. I told him I will be seeing the NP in rheumatology that I used to see and he told me to tell her to get me in with one of the doctors in her clinic and if she wouldn't to call his office right away and he would personally call her. I have heard really good things about her so hopefully things are on the right track. It has been a nightmare just trying to find someone to even listen to me. Anyway I'll let you know how it goes. I will be seeing her Wed.
My question is do any of you have insomnia? I have been researching everything I can on DM. I have come a crossed a some articles that do say it can be a side effect but it doesn't seem to be one of the main ones. At least not from what I have read. My Derm says it is. Just wanted some feedback. If anyone does suffer from this, just wanting to know what you do about it. I have been suffering from this for a few years, but it has gotten dramatically worse. Last month I went 2 days at a time without sleeping and I did that several times. I used to take Ambien and it worked at first but after time I would wake up at 3 a.m like clockwork and not go back to sleep. I also started reading about how bad Ambien is for you so I weened myself of it. I try everything, relaxation techniques, etc.. Couldn't tell you the last time I got a good nights sleep or woke up feeling rested. Just wanted some input.
The other thing I have noticed that has gotten dramatically worse over the last several months is my eyesight. I thought nothing of it at first. I am 44, but I have never worn glasses. At first I just needed them for reading, but now I notice it is continually getting worse. I literally cannot read any small print and things are often blurry. My eyes are always blood shot looking and kind of glassy. Any thoughts??? I am a single mom with no vision insurance..
My voice has also deepened quite a bit over the last year or two. I have read that can happen with DM. I get hoarse a lot, especially the more I talk and at times if I try to sing along to the radio, omg, it sounds like snap, crackle, pop!! I often get called sir on the phone.. Do any of you experience that?? Sorry about all the questions. This is all so new to me. Most of you seem so knowledgeable about this horrifying disease and I am just trying to learn all I can...
Thanks for all your help :)
As far as glasses, I am over 40 and have had the eyesight decline as part of aging. So far, I'm still just a reading glasses girl. As Autumn said, you really need to get your vision checked annually while on Prednisone. If they are glassy looking, I would make an appointment very soon.
Regarding the insomnia, have you considered a nutrient deficiency, such as calcium, magnesium, and/or vitamins b (esp. b12) and d? Deficiencies in these nutrients can cause insomnia and be a result of poor digestion, along with a lack of probiotics in your system according to my research. Just thought I'd throw these things out to give you something more to consider. Hope you find the answers you need. Best wishes.
Yes I have been tested for every vitamin deficiency known at least I think. lol! Well my Derm actually suggested he thought I might have an overlapping disease, but I went to that crazy Rheumy that I wont be going back to and she said no way. If you look at the post I just posted about needing help for my apt. you will see most of my labs are normal except my cpk and I have a lot of skin issues. I did mention some labs that were not normal that my Gp never mentioned to me. This is all just driving me crazy, which does not help my sleep. I totally get what you say Lexisgirl about the lesser of two evils. I don't want to take a sleeping pill, but on the other hand, sleep deprivation can literally kill you. When I was going 2 days at a time without sleeping, I didn't know what I was doing. It was really very scary. Will you both read my new post and give me some of your insight. I am just learning and you both seem very knowledgable. Thanks once again xoxo