Muscle weakness

[Melaxx]

My legs muscles mainly have been really weak , heavy , hard to go up the stairs up hilly road have to stop several times . Had blood tests come back with very high inflammation in my muscles . Dr asked to repeat the bloods and see him very quickly ( worries me) could be Myositis or idk what else , my raynauds and arthritis in my hands got very bad recently too , my arms are very weak too . Anyone knows about this condition, I will end up in a wheelchair? Thank you 🙏

[Lisalou19]

I have a suspected form of myositis. I feel the same weakness that you refer too.

It is quite worrying for sure.

The treatments are good and I very much doubt you will end up in a wheel chair. There are of course different types of this illness. I have a friend with polymyositis and she's still very mobile.

Do you find it a struggle to talk and do something at the same time? I struggle with this .

Myositis can be secondary for some x

[Melaxx in reply to Lisalou19]

I find I stutter sometimes, I never suffered of it in my life , I didn’t have a diagnosis yet , that’s what I’m thinking could be or Vasculitis, nerves damages , who knows . Blood test again on Thursday see the GP on Friday and the rheumatologist next week , I’m guessing a course of steroids and maybe up the dose of the immunosuppressant or trying a combination of two different immunosuppressant. Thank you for give me reassurances

[Lisalou19 in reply to Melaxx]

I've stuttered at times and convinced myself id had a stroke.

It seems a difficult one to diagnose myositis

Do let us know how you get on xx

[Melaxx in reply to Lisalou19]

For sure xx

[Mandypandy1969]

I have the same weakness and I have fibromyalgia. Immflamation rate always been high. 92 at moment. On d.m.a.r.d. drug. Also have sjogrens, raynauds and other stuff. X

[Penelope-Mary]

Hi melaxx

I have myositis secondary to SLE. I too have the same symptoms and have had rituximab infusions added to the usual SLE medications.

Do you have difficulty swallowing at times?

It’s absolutely exhausting carrying our body around isn’t it?! I’m also in quite a lot of pain with muscle inflammation.

No you most probably won’t end up in a wheelchair but I know why you would fear that...I dream of being pushed around sometimes!

I hope you are offered medications to relieve the symptoms; I truly feel for you.

PM

🌼

[Melaxx in reply to Penelope-Mary]

Thank you, I’ll let you know the outcome

[Lupiknits]

I have extremely weak muscles, which contributes to swallowing difficulties and urinary/ bowel problems. No myositosis, nor any mention. A mixed bag of connective tissue disorders, including scleroderma, Sjögren’s, lupus- like and Secondary Raynaud’s.

I don’t know whether that helps, but, as others say, there are plenty of treatments in the case it is.

[Lisalou19 in reply to Lupiknits]

You sound just like me.

I have the swallowing problems too.

I wonder why myositis hasn't been looked into for you.

Although it is very x

[Melaxx in reply to Lupiknits]

Thank you , you all been really helpful, I was really stressed yesterday, after reading all your replied I’m better ty

[Melaxx in reply to Melaxx]

My ck muscles bloods were up to 3000, they gave me cortisone for 3 weeks and if doesn’t go down I’ll have to have cortisone drugs intravenous. Should I stop the malaria immunosuppressant tablets ? Bc I read after long term use chloroquine caused muscles wasting. Ty