A sudden flare-up of my Dermatomyositis has left me weak and sleeping 20 hours a day. It came completely out of the blue.
One morning I woke up and found myself struggling to get out of bed. My entire body hurt but I struggled to the kitchen and poured myself a large glass of water. That’s when all the fingers on my left hand suddenly turned white.
My initial thought was my heart must have stopped pumping blood properly. A more reasoned thought, a minute later, said it could be a reaction to some antibiotics I’d started taking the previous day.
Turned out it was neither. I’d developed a new illness called Raynaud’s. It seems it’s quite common in people with Dermatomyositis but I’d never heard of it. The symptoms went within 5 minutes of holding my hands under hot water and haven’t returned.
Unless they came back in my sleep because I went back to bed and slept most of the next few days before getting the strength to visit a doctor.
This is where things begin to get worse.
After listening to my lungs he sent me for an urgent chest x-ray, and equally urgent blood tests. The blood test results were as I expected – everything I was tested for (except for white cell counts) was abnormally high. My medication got bumped dramatically from 5mg of Prednisolone daily to 100mg to try and stop it in it’s tracks. And it seems to have helped a lot..
Now we’re just getting to the worst bit.
Two days later, starting to feel better, I was getting ready for bed when I started sweating and a sudden stabbing pain radiated through my back and chest.
Raced to ER in agony with a suspected heart attack. Attached to heart monitors, pumped full of morphine…well I could drag the story on and on here. But I’ll spare you. It wasn’t a heart attack.
A chest xray taken some hours before they released me revealed that a hole had suddenly appeared in my lung. My left lung partially collapsed expelling air into my chest cavity, and mimicked the pain and signs of a heart attack. The fact it wasn’t a heart problem gave me immediate mental relief.
Since then I’ve been in fairly constant pain. Had a further xray which showed the hole hasn’t grown, and I’m having another one on Tuesday. If the hole hasn’t closed or shrunk by then they’re going to operate to seal it and fully re-inflate the lung.
Meanwhile I’m mainly eating powerful painkillers which are leaving me sleepy.