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I have just learned that I have Mytosis to add to the shopping list of diagnoses that i currently have. My rhumey tried to explain it to me

But it kind of when over my head do i did some research well..

I understand that Mytosis causes weakening of the muscles but understand If it is a permanent thong or if it will go back to normal once my flare is under control or it i will just continue to get worse.

i tried to squat down to pick something off the floor and couldn't get back up. In the end I had to fall to the side, roll on to my hands and knees then use a cabinet to pull myself up.

Stairs are like mount Everest and I'm praying they will get better

Has any one had any experience with Mytosis?

9 Replies

Hello fellow lupie. I found your post very interesting as your description of restricted movement sounded just like me. How did your rheumy actually diagnose myosotis? Does it show in blood results? I have great difficulty with stairs, getting up from a squat position and general feeling of extreme weakness in my lower half when walking so can only walk short distances. I have been trying to improve core strength by doing hydro exercises shown to me by a physio and also swimming where the body weight is supported and I don't feel so weak. My nemesis was being able to manage the steps out of pool which I can now manage. I will be really interested in your reply and other people's responses to find out if this weakness in walking etc can be improved. Keep smiling. X


Hey Fitchick1

Thank you for your responses they really helps m.

I had been feeling sore and stiff and was progressively having trouble walking but when I was also having joint panes and al that other good stuff at the time so when I I told my GP he just put it down to the lupus and left it at that.

One day the Nurse from the Rheumatologists office called and told me that my CK levels had dramatically risen (So yes it did show in my bloods) and asked me if I was having any muscle pain or weakness which I had.

During my next Rheumatologist appointment the doctor tested my arms and legs and said he felt I had substantial muscle weakness and arranged for me to have a muscle biopsy and a EMG to confirm his suspicions

I have been since peen put on a high level of Prednisolone and i am feeling much better however Im not sure what will happen when I stop taking it.


Hi whatshernameagain (love ur name!!)

I had experience if this shortly after diagnosis. My gp told me this, and other symptoms were part of lupus so just get on with it. My muscles got so inflamed that touching them was agony. Even clothes pressing against them was sore. My breathing and gut muscles were also affected so I was pretty ill & couldn't breathe properly. I was so weak I couldn't raise my hands to my head and sometimes couldn't walk from room to room even with the strategically placed furniture.

So you get the picture... I was very ill with it and it was horrible.

I'm not telling you all that to depress you. When I did finally see my Rheumy she was shocked the gp had let it get so bad and I was admitted to hospital and pumped full of steroids. Within days I could walk and breathe, eat etc. It was a fast then around. It took time to build the muscles back up again (prob longer than needed because I was rubbish at doing the physio) but they did all come back.

I get slightly sore in my muscles when I start to flare but I know now not to let it get bad and I can call my Rheumy and we sort out an anti flare plan or change of meds.

I've had a bit of a remission the last 8 months and have even begun to run (never thought I'd do that again) . I've just signed up for a colour me rad 5k in celebration of new found health :)

So I guess I wanted to say. Yes it can be awful if left untreated, but yes it is treatable and reversible in my experience.

Hope you find yours easing soon


I still roll onto my knees to stand up from sitting on the ground. I think it's just habit now.


Thanks butterfly1000

Your comment was very helpful and inspirational!

I am currently taking advantage of a Fresh Start programme at my local gym which helps people with disabilities and even though i initially felt embarrassed that I couldn’t do much I honestly think I am making progress.

I am determined not to let Lupus kick me down (Even though I had a little cry today)

I committed myself to doing my stretching exercises every night and I am looking at my diet to make it more healthy.

I was hoping the rolling on to my knees thing wouldn’t be permanent .. dunno how that’s going to look when I finally get a boyfriend lol


I reckon you could make the rolling into knees thing into an attractive boyfriend-enticing dance move ;) - I'm pretty sure it's just habit for me - 10yrs of pain vs 10months if freedom.

I think one of the main things that has brought me health has been my diet - I am partly following a paleo diet and any time I ever off it I get sore and tired again. Gluten is def an issue. Hope you find what works for you. soon. Xx

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Wotshernameagain....had muscle weakness for awhile now. Wasn't diagnosed till a month ago with lupus, but I found walking alone wasn't getting my strength back. I picked up bike riding a year ago and have gotten my muscles back. Even though I do it everyday, I still have weakness here and there, like climbing stairs, getting up off the floor... I hate having to use something to help me up. I don't feel old yet to be having these problems. That's nice that your gym has classes for those with disabilities. I don't go to a gym cause I pop muscles too easily using machines. I am not on any medication yet.. Waiting to see a rheumatologist. Good luck and stay strong in mind, spirit and body!!!!


Thank Natura


[quote="wotshernameagain"]... I have just learned that I have Mytosis to add to the shopping list of diagnoses that i currently have ...[/quote]

It would be possible to misdiagnose dermatomyositis as Lupus : both are systemic autoimmune diseases made worse by sun-exposure. [ i.e. your "shopping list" may be shorter than it appears ].


I'm not sure but i will defiantly ask my rheumatologist. The seemed to believe that my EMG and muscle biopsy results are consistent with


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