Over the past 5 years I have had varying symptoms that my primary care never put together as a possible illness. I have had joint pain (I ran too much), I had severe gastrointestinal issues(tested for Celiac-negative but recommended a gluten free diet), I have Reynaulds syndrome, I couldn't sleep well (menopause) and skin rashes(too much sun). My husband and I live full time on our sailboat along the east coast of the US and the Bahamas, so sun is always an issue. Finally last spring we were in the Bahamas when my hands swelled to twice their size and I couldn't sleep from excessive pain in elbows and shoulders. I also started to develope ulcerations on my legs and hands. Once back in the US, I went back to my primary care and she gave me a course of steroids and within days the swelling and joint pain was almost gone!
I was referred to a rheumatologist and many blood test later I had no blood indicators for Lupus but I was started on Plaquinel, prednisone and Naproxen. My ulcerations were unfamiliar to the rheumatologist so off to the dermatologist.
Skin biopsies confirmed they were Lupus like lesions and more steroid ointments were added, sunscreen all of the time and where long clothing and hats all of the time.
Ok 6 month recheck, arthritic symptoms under control nut the lesions are so much worse and extremely painful. The dermatologist added more ointments with no change. The weird part is the lesions are on my left arm and hand, right hand, face and legs but absolutely nothing on my right arm. Also, if I accidentally scratch, rub or wash a lesion, it can excessively bleed for 15-30 minutes. Very embarrassing when you are out for Christmas dinner and the lesion on your nose starts bleeding without realizing it and blood drips on my plate!
I can't even let my husband touch my left arm because it is so painful. I get that Lupus can't be cured but there are times I want to cut off my arm it hurts so much. And on another post, someone said their face looked like a meth addict and I said that to my husband a while ago.
I am incredibly fortunate to live my lifestyle and have the support of my husband but would be interested in hearing if others suffer from the same extent of lesions and any other suggestions for treatment. I go back to both specialists next week for another follow up