Good afternoon,
Having received my diagnosis in the middle of December this is all very new and to be honest quite scary.
the Myositis has been found in my Paraspinal muscles and as yet I have not been advised of a treatment plan.
Be very interested to hear from anyone - all hints tips and advise very welcome.
Try this very helpful & active group facebook.com/groups/themyos...
Thank you so much I have already registered
I was also diagnosed late last year. Keep pushing for help,, it can feel like you are hitting your head against a wall, but don't give up. I hope you have someone who can fight for you , as you could well find there are times you do not have the energy to fight for yourself. Watch as many video's from T.M.A on YouTube as you can. I found them to be most helpful. Learn as much as you can, because it is disheartening the amount of people in the health care system who will ask what your problem is, then tell you they have never heard of it. Have you been put on steroid treatment ? If this does not seem to help go back to your G.P. . You do need a specialist to prescribe more tailored medication, your GP should help push for this. Waiting times are a nightmare though .
Physio is extremely important. I have seen two, both NHS. The first gave me exercises for arms and legs. He was going to discharge me but I asked for one more appointment. This was with a woman, who wants me to concentrate on my pelvic floor and core muscles. Because if you have a strong core, it helps support your limbs. Which in turn helps stability. I have had 3 more appointments with her . So was obviously not ready for being discharged
You need to be careful exercising during a flare, professional help is best.
Don't loose heart, over the months you will improve, even though it seems like little steps. When you look back you will be surprised at how far you have come.
Thank you so much for this. Since the diagnosis at The Royal Free with the Neurophysiologist I haven’t had any contact. Also awaiting results if myMRI. Just feeling overwhelmed of what. The future could have in store. The major problem so far has been the rash on my eyes which is under control with steroid cream. I’m unsure if the aches and pains I am currently experiencing are “IT” or just normal heading towards 51 pains!!!
I will definitely look at that YouTube site.
Thank you
We're you told to be careful with the steroid cream on your face ? It does thin your skin.
Do you have the rash on your body ?
Mine started in my scalp, then forehead. At the time , I thought they were midge bites. They kept growing on size and spreading down my face. Then onto my biceps and across my chest. What out for the holster rash , on your thighs . Also on your elbows and knees.
Do you have gotrons papules on your hands ?
Contact your GP. If your mri results are back , make an appointment to discuss results.
It has been a bad time for you to be diagnosed, with Christmas and the rise of covid cases, it will all add to delays for you.
Don't be surprised, if you get phone calls at short notice for hospital appointments. I was not expecting a referral to physio, and dermatology. I think the second , I was referred from the GP and hospital , so think I had more appointments than needed.
One of my scans showed an ovarian cyst, which the GP was not concerned with at all. I got a call from appointments this morning, for a gynecology appointment this weekend. The GP thought you only had to check for lung and breast cancer. I pointed out the other 3. He was not aware of who was responsible for annual cancer screening with D.M. I was told to ask rheumatology at my next appointment, if they did not do annual screening, I have to get intouch with my Dr in December.
So do as much research as you can, you can not rely on medical staff know much about your condition, as it is a rare disease.
Your aches and pains could well be myositis. I put so much down to the menopause, and it wasn't that at all
The rash, fatigue, muscle weaknesses and pain , swallowing problems, indigestion, bowel and bladder problems , breathing difficulty not to mention brain fog are all myositis related.
I saw a poster about menopause symptoms at my GP surgery. There were two of the 30 something signs I did not have. One was hair loss, it is coming out now , a side effect of treatment. Have you been started on oral steroids ?
You could well need other medication along side this.
There is so much information to take on board. Make notes if you watch a video , that way if there is a particular point you want more information about you know where to start looking. The amount of times I had to hunt through my history trying to find out what I had watched was unreal.
It is all very scary, and you could well have to make adjustments to your life. But with the right treatment you can improve so much. Don't give up hope.
And remember we are here for you.
Hi Annabellelucy,I hope you receive the help out there that you need to be able to cope with this disease.
I was diagnosed with Dermatomyositis Just over 7 years ago. I still see 3 Consultants on a regular basis: Dermatologist, Neurologist and a Rheumatologist.
I have been on a variety of Immune Suppressant Drugs and High Dose of Steroids, in Tablet form and Body Creams & Scalp Lotions. However, my disease still remains highly active.
I wish you all the luck in the world in finding the right treatment path.
Hopefully, your condition will go into remission then you can get your life back.
Hi Annabellelucy, I hope you are put forward to seeing a team of professionals who will advise you on the best treatment for you.They always state that each person with Dermatomyositis has different symptoms and therefore require different Meds to help them through.
Normally, you are referred to a: Dermatologist, Rheumatologist and a Neurologist.
These professionals will look after you.
Appointments are pretty slow moving due to Covid times.
I wish you all the luck in the world going forward x
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