Hello everybody,
new to this group and new to Dermatomyositis (diagnosed 5 weeks ago).
Finding the whole thing and meds side effects (steroids and Methotrexate) do make my life difficult, but I guess it was to be expected.
I am in England, close to Southampton. Now British but my mother tongue is French.
Looking forward to meet you and learn a bit more so I can try to settle down.
Hello Anne88 and welcome.
Can I ask how your specialist reached the diagnosis of dermamyositis please? I am suspected as having this but dermatologist thinks no and rheumatologist thinks maybe 🙄
I’m riddle with reoccurring skin rashes but not the normal you would see In this illness. Also it’s a flaring rash, comes and goes.
I would be interested in hearing your story . X
Hi Lisalou19,
that was going to be my next question. I explain : The rheumatologist said he is sure it's that, but although i've had negative blood results to Lupus, Rheumatoid arthritis... I'm not positive to dermatomyositis. I had a rash on my hands with little vesicles like I had been burnt. It went away, since then I have red articulations on my hands, a tiny bit of a rash on my neck and on my cheeks sometimes, extremely sore throat, extremely tired, difficulties breathing and that's it. So I'm not sure... They gave me meds for this and said "let's see how it will be in a couple of months" !!! x
Ok, sounds very similar. I get the red rash on chest, cheeks and forearms . Constantly covered in livedo.
Generally feel unwell most days. My legs feel like they are getting weaker and an awful
Pain in my lower back . My diagnosis is currently UCTd . I feel like they are waiting for me to collapse or something before real action is taken.
I’m also having persistent problems with my bladder control. My breathing gets worse when I flare then returns to normal again. Everyday is something different x
I have some bladder control problems too. It's really a changing life condition 
x
It really is. I have an emergency hospital appointment tomorrow. I’m so tired of feeling like I’m rotting from the inside and I can’t leave with this bladder problems. I’m 38 and I have no life. 2 years ago I was doing all sorts. I’m really mourning the old me at the minute x
Hello and welcome. I'm in north UK and am quite new too. I was diagnosed after getting quite ill with multiple issues. One symptom was terrible itching, crawling, burning and pin pricking all round the trunk. Ended up in hospital where a blood test showed I had one of the hallmark antibodies and a CT scan confirmed interstitial lung disease as a not so welcome spin off. Was put on a high dose of steroids initially. Now down to 10mg per day but legs are weak. Got the first rheumatologist appointment in 2/3 weeks (so far I've just seen the respiratory lot).
I'm retired but thought I was healthy and that I had a good few quality years ahead of me! This thing just seems to have come out of the blue though it has probably been working insidiously on my lungs for years. It's so depressing dealing with this new reality but I'm determined to keep going (trying every diet modification going) - I have a blind dog who relies on me.
With your lung disease element, did you notice intermittent breathlessness?
When I’m feeling well, I don’t get out of breath and when I’m poorly with loads of symptoms going on I get extremely out of breathe and definitely can’t talk and do something at the same time x
Hi
I actually feel well compared to how I felt before the steroids. But the leg weakness has come on despite the steroids. I'm not usually aware of being breathless - unless I try to walk and talk at the same time or on a bit of slope near the house (which floors me).
I bought my own oximeter to keep a check, plus I have a fan on in the bedroom at night and oxygenating (supposedly) plants!
Got the bladder thing going on too, plus I did have skin pain and itching but no actual rash. Lately though my cheeks have started getting warm and red at times, so I lather on sunscreen at the start of the day and intermittently throughout the day.
Good luck at the hospital and keep us posted!
Yes walking and talking is a no no and stairs it’s like picking up dead weights and they get weaker and weaker the more stairs I climb.
I get awful rashes and the one on my face burns like mad.
I finally got a referral to a urologist today. Again I thought this bladder issue may of been in my mind but I’ve started to see a real pattern when I go into a flare. X
I don't think the bladder issue is unrelated as several people have mentioned it. In fact it makes sense that your pelvic floor muscles might be affected too. I can manage the urge to 'go', but once I start actually making my way to a loo, that's when I begin to feel I can't wait a moment longer! How did your hospital appointment go?
Your reply is like reading about myself. Yes this bladder issue is definitely part of this immune illness.
Hospital went well, I definitely have found my Prince in medicine after kissing too many frogs.
He is doing a referral to urologist and said I need a back and brain scan which he is arranging as an emergency. I am covered in livedo from legs to arms and hands which he was concerned about.
The past 2 weeks I am getting crippling lower back pain and neck pain. Does this sound familiar to you? I’m hunted over when my back hurts this bad.
Not sure if this is what Mysiotis feels like x
Sorry to hear you are going through the wars. I think the problem with Myositis is that people are affected differently.
When I went to hospital with a suspected infected gallbladder (currently waiting for an op) I had severe stinging pain just below the breastbone. It hurt just to breathe! Not even the doctors could agree if it was down to general inflammation or the gallbladder. I'd also had pain down the side of one hand and in some fingers but that stopped. Then I developed severe neuropathic type burning pains across my front and back. They would start about 5pm then I would get a 15- 20 second spasm almost hourly. It felt like someone was running a burning iron over me and was so bad, I would shoot up in the bed (or fall off it) and scream! I was on maximum codeine and paracetamol plus oral morphine.
On discharge I started on Gabapentin and Amitryptyline. The pains stopped either due to that or the steroids kicking in or the fact that moving around more helped. Eventually I weaned myself off those and the standard painkillers and the only pain I have had recently has been a bit of an ache in one leg but that comes and goes.
It sounds like your 'prince' is on the case so that's good. Maybe some of your pain is down to nerve inflammation not just muscles? I hope they get it all sorted soon. x
Covid 19 vaccine derived Polymyositis
Inclusion myositis conclusion 
