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.
I am new to the site and this is my first posting, so please bear with me.
I suspect that I developed PM about 10 years ago but wasn't diagnosed until we moved to France ( which I believe was a life-saver) 6 years ago. My creatine count was 4800 and I was put on 80mg prednisolene and 300mg imurel. After a few years of what we have all been through - weakness, dribbling, can't swallow or even smile etc. - my blood results are showing normal although I still take 10mg pred and 300mg imurel.
I have had very few spells of severe pain and now have none at all, unless you count cramp which I get alot of.
However, I do have symptoms I don't understand. Although my muscles are reasonably strong for my age ( 70 on the 9th), every few days I feel really ill in a way that is very difficult to describe, especially to a French doctor when you are English. It is like a panic attack or severe acid attack but the worst part is that I cannot sleep because when I relax in a chair or lay down it is as though my whole body is shutting down including my breathing which stops if I doze off and I come to gasping for air.
Sorry to ramble on but does anyone else have similar experiences?
I suspect that I developed PM about 10 years ago but wasn't diagnosed until we moved to France ( which I believe was a life-saver) 6 years ago. My creatine count was 4800 and I was put on 80mg prednisolene and 300mg imurel. After a few years of what we have all been through - weakness, dribbling, can't swallow or even smile etc. - my blood results are showing normal although I still take 10mg pred and 300mg imurel.
I have had very few spells of severe pain and now have none at all, unless you count cramp which I get alot of.
However, I do have symptoms I don't understand. Although my muscles are reasonably strong for my age ( 70 on the 9th), every few days I feel really ill in a way that is very difficult to describe, especially to a French doctor when you are English. It is like a panic attack or severe acid attack but the worst part is that I cannot sleep because when I relax in a chair or lay down it is as though my whole body is shutting down including my breathing which stops if I doze off and I come to gasping for air.
Sorry to ramble on but does anyone else have similar experiences?
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I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
I have problems sleeping since diagnosed with PM and had to start anxiety medication because of the disease and the Prednisone (as if being sick isn't enough).
And like you, even though I'm 38, I have bad days where I can't even function and feel just downright ill, physically and mentally.
Thank you for the advice. Unfortunately I have told my specialist about it as best I could in my broken French but he seems to think that it is just another symptom of PM or the drugs.
Don't misunderstand me as I have huge respect and gratitude to the French Health Service which had me undergo inumerable tests and came up with a diagnosis within 5 days of seeing a general practitioner; whereas I had spent many months prior in the UK getting nowhere.
Perhaps I will book in to see another specialist for a second opinion which is common practise in France.
I am curious about some of the medication you are taking in the States. Apart from Prednisone, I don't recognise them unless imurel is a European version of Methotrexate or Azathioprine. I'll give it a Google.
Great to hear from you.
Your description of your breathing difficulty brings to mind "sleep apnea"; it could be caused by the prednisone that affects sleep patterns. I had to take temazepam when I was on high dosage of prednisone; I would wake up at 3 and be unable to go back to sleep if I did not.
Thank you all for your support and advice.Sorry I haven't replied sooner but as you know some days are pretty grim.
I had the same thought as you Levek, about sleep apnea, so I checked in with a Heart/Lung specialist for tests. The results were all normal apart from a slightly fast heartrate and, not surprisingly, elevated blood pressure - more pills, Coveram and Essedrex.
There is one thing that has helped considerably with the 'stop breathing' symptom which surprised me somewhat. A friend of mine, who does not have any Auto-Immune disorder, told me that she had similar problems which were caused by acidity. I have always been susceptable to acidity but haven't had actual acid reflux for a long time now so I was very sceptical. However since taking Omnepresole I have noticed a big improvement.
Anyway, enough of me, how are you all. I hope you are having more good days than bad.
Dee, what medication do take to relax? And Madison, what do you take to help you sleep?
Bless you all.
Hugs!!!