A typical pathway to a rare condition – Patient L

Why am I taking SO much longer to trudge up the hill to the railway station ?

Why am I finding pulling down a whiteboard so much harder? Why are stairs getting to be difficult?

Why am I having so much difficulty carrying equipment from room to room?

Why have I pulled a muscle in my shoulder from trying to pull down a “disabled seat” in the train?

Why am I getting excruciating headaches, which cause vomiting from the pain that cannot be stopped and I end up in Hospital?

How is it that I pulled upper arm and shoulder muscles just closing the boot of my wagon?

My friends can all go to the gym, or swim BEFORE work. I tried swimming weekly for a while on my day off but I could barely get out of the pool at the end. I then leaned on the wall in the shower, finally got home and collapsed onto a couch for the rest of the day.

Why do I prop my elbow on the door frame with the arm holding the hairdryer while drying my hair?

Why am I finding all my pots and pans so heavy?   Why can’t I open ring pull cans? When did 2L milk get to be so heavy?

Why have I got tennis elbow from too much computer mousing?  Why can’t the physio improve things for me?

Why does my head feel like it is “left behind” when I’m a passenger in a car that is accelerating, so that I hold my neck with my hands?

Why can’t I keep up with others when walking, I end up tagging along.

Why isn’t my shoulder improving after nearly one year of short wave treatment at out- patients?

Why do I feel sore and exhausted after a massage?    Why do I live with heatpacks, every night?

My GP prescribed Morphine patches, this helped with the pain, but I was still finding working and running a home very tiring. I took a years worth of sick leave to get a diagnosis during which a Neurologist found “jittering” of muscles during an EMG test.

Finally after a muscle biopsy I got an answer. Muscle damage was occurring as a result of an autoimmune response. Evidence was supported by Creatin Kinase readings in the blood being much higher than normal.

The eventual diagnosis is idiopathic inflammatory myopathy causing pain and weakness. Cortisone therapy and now Methotrexate seem to have slowed the muscle breakdown considerably, as well as anti spasm drugs Endep and Antenax at night, still with the Morphine patch weekly.

I really appreciate the Myositis support group for a sense of “it is not just me”!

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