Hi I'm sorry if this is a long post but I need a good rant!!
I haven't been diagnosed with lupus but it has been mentioned by a few consultants.
Basically I've been suffering from severe fatigue, joint pain (mainly ankles knees and hands), random rashes, pains when breathing, confusion not remembering names or forgetting what I'm talking about, hair loss, ulcers up nose, cold sores, no appetite, weakness in my arms, I've had really painful rashes from the sun, my auntie has also got lupus.
I've been having these symptoms for about 18 months now on a permanent basis I have been on hydrohydroxychloroquine 400MG a day for around 14 months now which has taken the edge of my symptoms (before I was asleep for 6 pm every night couldn't keep my eyes open)
At my appointment in January I was given a IM steroid 120mg depo-medrone injection which helped dramatically but unfortunately started slowly going back down hill after about a month and eventually had a big flare at the begging of may.
I was not due to see the rheumatologist until July but I rung to rearrange due to the flair I was seen at the begging of June but the rheumatologist said that the symptoms I'm having now are different to what I normally have so now I have been diagnosed with fibromyalgia as well as my "temperamental immune system" he said he could put me on methotrexate and oral steroids but they won't help these symptoms because there different to the symptoms I usually have but I feel the same as I always have done??? The only new symptom I mentioned was my hands??
I'm really confused and apparently the steroid injection lasts over 6 months?? Is that right??
Also i mentioned I'm worse when I'm in work and my skin goes very red but he said that doesn't make sense but I am
I work at a school and it's starting to make me think it could be all the strip lighting??