After having focal myosotis in my abductor muscles I’m now experiencing pain in my hips, groin and thighs as I think the tendon aren’t supported by the muscles now as they’re permanently damaged.
Anyone experienced this with having myositis? I’m back for my mri results tomorrow just wondering what treatment is available for chronic long term symptoms?
My muscles won’t repair? A hip surgeon said not to keep having steroid injections and my physio said not to have the bursea removed. I’m just at a loss and the pain is getting really bad and affecting my mobility.
Written by
MissFG
To view profiles and participate in discussions please or .
Hi fg sorry you are suffering I have polymyositis and lately I’ve got chronic groin pain like toothache a hot water bottle in that area helps a bit I’m sure it’s part of myositis I see my rheumatologist end of month see what he says although he is never very helpful and believes myositis has NO pain ,, so what is the pain from ,, good luck with your results PM
I have been diagnosed with Dermatomyositis for 3 years and looking back I've probably had the disease for 5 or 6 years. As so many others have, I initially found it to be painless but it slowly creeps up on you and is really quite insidious; I believe that this and it's rareness makes the diagnosis of this disease so difficult. Up until last year I was mainly pain free but this year I am experiencing quite a bit of pain in various parts of my body. I attribute this to the effect of muscle loss which has caused stresses on the rest of my body particularly my spine, hips, shoulders and hands.
Once you lose muscle to this disease it is gone for good, all you can do is try to build up what muscle you have left by regular exercise and to find a medication combination that puts the breaks on the disease itself.
The last aspect is the most difficult to resolve, what works for some does not work for others; its all a bit trial and error I'm afraid. After 3 major flare ups in 3 years I have been granted permission from the NHS to begin 6 monthly Rituximab infusions, I am hopeful that this treatment will work as each flare up kills a bit more muscle.
All I can advise is to contact Jo-Goode on this site who may be able to recommend a good Consultant Rheumatologist in your area who hopefully will be able to give you a correct diagnosis. My own condition was finally confirmed by a muscle biopsy.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Frustration in obtaining conductivity and EMG tests, muscle scan and biopsy for diagnosis
Newbie here. 
How do you get a firm Mysiotis diagnosis? What scans will show affects on muscles? 
Diagnosed with Polymyostis 
