Yep! In fact, my thighs / quads were my first major symptom area. They'd get these lightening shooting pains that had nothing to do with whether or not I'd exercised them. Also they were initially my weakest muscle group due to the CTD.

What's helped me are things like:
- Epsom salts baths
- Reducing stress
- Eliminating gluten
- my Richway Biomat

Feel better, and glad to have you here!
Tricia

Thanks for your reply! I went gluten free in September and feel a lot better. I do take the Epsom salt baths but don't know what the Richway Biomat is?! I try to exercise a few days a week and it seems to be worse, but I was told exercise helped decrease symptoms/flares. I think today is just one of those days where it all gets to you (emotionally).

Hi,

My thighs and knee joints hurt every day. Some days it is worse than others. My rheumy ordered a MRI of the thighs thinking myositis, but nothing showed up. I see her on May 1st and will mention it to her again. I am guessing it is something I have to live with.

"Polymyositis (PM) inflames and weakens muscles in many parts of the body, and especially those parts closest to the trunk. With polymyositis, dysphagia (difficulty, discomfort or pain in speaking or swallowing), fatigue, and pain in the muscles are common. PM rarely affects people under the age of 20, with the peak onset between the ages of 30 and 60."

I have dysphagia and fatigue too.

Feel better!

Gabrielle

Hi there,
I too have thigh pain, not always, but Ill have days where it feels like my quads are very bruised, and of course there is nothing, the slightest touch is painful!
I havent done anything special for it. it just comes and goes like almost everything else!

Hey, Red, welcome.

I am a guy, so my pattern of symptoms is sometimes different from others here. When I was in my mid-teens, soreness in my legs was my first symptom, accompanied by high fevers.

In my 20s, I had pericarditis, but no more muscle pain.

In my 30s and 40s, I got headaches, which have continued.

In my 50s, it's been blood clots and headaches.

I have had many long periods with no symptoms, and life-threatening problems on three occasions (the clots and the first episode of pericarditis.)

If you are young, steroids might tide you over for a while, or the symptoms might remit spontaneously. The main thing to focus on is this: This may not last, or could be treatable. The pain is really shocking at first, and if you didn't have moments of panic, you would probably be the first person who was so lucky!

I don't go to the rheumatologist often, either, but I'm starting to change that. And yeah, moderate or light exercise should help, but only between flares. Try to work the muscle groups that are not affected. I have been sick now for almost six weeks, and I am really glad I was training before this happened... my muscle definition is gone, but I still have some strength left. and as I resume exercise, I'm not starting from zero.

Welcome to the group, keep posting.

Thank you for all of your insight. I still don't know much about this disease, so any knew knowledge helps! The pain is most days but not all. I am on steroids right now, so they feel ok today :)