I thought it might be time to let you all know how I ended up in this mess in the first place. It took a while to get here, so bear with me.
About 6 months before I was officially diagnosed I started to get a rash: On my face at first, across my nose and cheeks. Not long afterwards I started to get a disc shaped rash on the right hand side of my belly (that’s stomach for you non northern UK’ers).
It’s probably worth pointing out my lifestyle at this point.
I work in software strategy for a small company and I travel a lot. Mainly in the UK, but also abroad: North America, Europe and Australia. The previous 12 months I’d been to all of those places, several times. The reason I mention it, is because I do wonder if I picked up some virus on a plane, as there is a possibility that the Epstein Barr virus can cause dermatomyositis and I had very swollen glands behind my ears for months that year (I haven’t a clue about medicine, but it’s something I noticed).
After the second rash occurrence happened, I went to the doctors to ask about it. I was told I had Rosacea on the face and given a cream to use. As you can guess, it didn’t help. The send rash on the belly was dismissed as just a little eczema (again various creams didn’t even touch it).
The rash progressed. It started to form a symmetrical pattern on my upper torso. Within a couple of months it had spread to the other side of my belly, mimicking the original almost exactly, then around and up my back, onto my shoulders. It looked very bad, sore too, but it wasn’t particularly sore, or itchy.
Here’s a little look at it (sorry for the gruesome shot)
Quite honestly, the rash wasn’t anything other than a irritation (literally). I went back and forth to the doctors, had various diagnoses including, my jeans rubbing my skin and mites…
The mistake I made was that I was starting to get other symptoms and didn’t connect them to the rash. Shortness of breath and a dry cough came around 4 months after the original rash. Muscle weakness around the same time. I didn’t mention these to the doctors until it became so noticeable that I could hardly walk.
The muscle weakness came on over about a 6 week period. I flew to Australia around 3-4 months after the first rash appeared and about a week after I noticed the hand rash starting – this is one of the diagnostics for dermatomyositis
the term used is ‘Grotten’s Papules
‘ (you can’t see the cuticles in this image but they show tiny bleeding) – here’s what my hands looked like:
When I got to Australia, the next day I had awful pains in my hips and legs, I could hardly move them. I thought it was just the flight, but, I’d flown business class and quite honestly it’s like a holiday in the sky and I’ve never had that reaction before. Still I just dismissed it and got on with work.
When I got back, within 4 weeks I could hardly walk with joint and muscle pain: I literally hobbled.
My dry cough became more frequent, the pain more intense, the weakness in my legs moved into my arms and finally my neck/head/scalp. But probably, for me anyway, the sheer overwhelming exhaustion was the most awful thing to cope with, I was sleeping up to 18 hours a day. It made work very difficult.
My GP thought it might be Lupus and referred me to a dermatologist.
By the time I got that referral – 6 months after the first signs, I was in a very bad way.
Now this is where the NHS
(National Health Service) isn’t so good. When my appointment came though, the earliest I could be seen was 8 weeks later. I knew in my heart, soul and mind that leaving this 8 weeks would be a serious mistake (I just knew this was serious). So, I spent £150 and went as a private patient to see a dermatologist.
The dermatologist took one look at my hands and with a smile of recognition said…”I know what you’ve got…it’s dermatomyositis”…except all I heard was, “I know what you’ve got…its blah, blah, blah, sitis”
Absolute BEST £150 Ive ever spent.
He immediately put me back into the NHS system as a urgent case and within 2 days I was admitted to hospital. And thats another story…where the NHS shines…