I have Systemic lupus erythematosus & Antiphospholipid syndrome
When I am stationery, i.e. sitting down at my desk, in a meeting, on the sofa at home, in bed, etc., I have to ensure I stay warm in order to not stiffen up, get numb joints, feet and hands.
· IN WORK; I can have problems with the AirCon in the open-plan office. What is standard heating temperature for everyone else can still leave me cold and I need an additional heater under my desk. This ensures I don't stiffen up and get "cold feet" and "stiff legs/joints". (I had to fight for the heater as no one in work understood what the AirCon and cold was doing to me in work - they said I should wear a cardigan)
· ON SOFA; I ensure I'm well wrapped up, have layers, heat on, etc.
· IN BED; I can wake up in the middle of the night - multiple times - with numb hands and feet.
But don't have skin discolouration so have been told I don't have Reynaud's.
I am 42 year's old and was diagnosed with Lupus at the age of 20/21. Since then, I have also been diagnosed with Hypothyroidism and more recently Antiphospholipid syndrome. I am currently taking the following medication; prednisolone, hydroxychloriquine, thyroxine, asprin, citalopram, calcium tablets and pain killers daily.
My question, if you would be so kind, is to ask if this cold/stiff and number legs and feet is also common in other people having SLE and/or APS? Even if they to don't have Reynaud's???
As you will all know, it can be very debilitating and lonely living with this disease and no one other than another sufferer or close family really understands. It can't be seen and no one else really understands so I'd be grateful for any feedback.