In a myositis flare!

So what  does that mean and what does it have to do with a turtle?

You often hear people with autoimmune conditions like MS or fibromyalgia say they are "in a flare" and I guess generically it means that their symptoms have flared up, gotten worse and they know that they will calm down again to their "normal" symptoms. But here is what it means for me with polymyositis:

The pain has increased to where I cannot really bear it and I have the option of a. taking more painkillers and being grogged out and not functioning or b. retreating from the world, as if I had the flu or something else contagious, and living in my room until it blows over. I suppose there may be a c. but I have not thought of it, probably because I am in so much pain I can't think straight.
So besides the pain it feels like you are just pushing yourself to do anything - the muscles are weaker so getting out of a chair makes you feel like a turtle stuck on it's back that cannot get up or over. Pouring the kettle hurts, walking up the stairs is nigh impossible except at turtle speed and with a long recovery at the other end and typing is excruciating to the fingers, wrists, arm and posture. So, sorry if I have not posted or do not post for a while. I know that if you are interested you will read some older posts like:
No longer rage against the disease
It is all about the muscles
Knowing what it is helps

PHOTO:   Summerian relief carving of turtle from Louvre Museum


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  4. Anonymous10:50 AM

    Im a 41 year old man have a shoulder injury mri said I have muscle atrophy in it. But noticed my forearm twitching for a week and is very weak. Started getting very tired and muscles in my back around my spine started hurting very bad and tight this started happening 2 years ago when I went to the ER due to the same symptoms my cpk came back very high they sent me home and said it was dehydration. When I start feeling like this it last for about a week with this pain. Then is starts feeling better and it comes back down the road. It can be a week or a few days. Any help Thank You.

  5. whoah this blog is fantastic i really like reading your articles on myositis and your personal perspective.
    You realize, lots of persons are hunting round for this information, you can help them greatly.

  6. Hi I know this is an old blog but I would like to build a friendship with people going through what I'm going through. I have dermatomyositis. My email is

  7. Hi, thanks for reaching out and I have emailed you with the subject 'Connecting over Myositis' - please make sure my email does not go in your spam box!

  8. Hi! I'm so happy to find this blog. I'm in the process of testing with a rheumatologist who can't seem to pinpoint what's wrong with me. I have this nasty I rash that comes and goes in flares, this is been going on for a year and a half. I believe that I do you have dermatomyositis based on everything that I have read. And my symptoms. Has anyone had blood work that came back that everything seemed normal, and still ended up after further testing to be myositis?

  9. Hi Michelle, so glad you found us too. It took ages for me to get a diagnosis as all my bloods, except CPK (measures muscle enzymes) were normal. I was only diagnosed by a muscle biopsy which was a simple day procedure in hospital. A Rash of an autoimmune nature is often DM or Lupus if on face in the shape of a butterfy BUT I am not a doctor!! Where is your rash and do you have muscle pain and/or muscle weakness? Have you seen our facebook page?

  10. Anonymous6:25 AM

    very reassuring to read this


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