I've just been diagnosed with a lupus-like disorder (Rheumatologist said "it is lupus, but atm I'm going to call it a connective tissue auto-immune disorder").
The most disabling symptoms are breathing problems ("interstitial lung disease") and OMG THE EXHAUSTION!!!!! I have gone from being a fit, mountain-walking, 56 year old man to being effectively housebound within a matter of months. Even typing this, I am shaking with fatigue.
I am on 20mg prednisilone and 400 hydroxychloroquine daily, but with zero impact so far.
I'm becoming very alarmed at the rapid progress of the disease and wondered:
- anyone have any other brilliant ideas about coping with fatigue (I have seen the Lupus UK guide)
- any encouraging words?