Hi! Just found this site
I was doing a search to find out more about this incredibly nasty rash that popped out last week and I came upon this website. In some ways I feel very fortunate that my lupus isn't any worse than it is and yet it still ticks me off that I've had to make so many adjustments. I was diagnosed almost 2 years ago but was having many signs and symptoms for 10 years, the rash included. I am on plaquenil and methotrexate and the rash hadn't recurred for the last 2 years. I am self diagnosing (the biopsy reports should be back in a week) but I think I have urticarial vasculitis. 40 mg of prednisone is the only thing that gets it under control, (luckily I only had to take it for 5 days). With the meds I'm on I have only a little pain which is tolerable but my big complaint is fatigue, fatigue, fatigue. If it wasn't for that I would be pretty content. I have been a very active person my entire life and that is my biggest complaint. I just quit my job (I'm an occupational therapist) due to the fatigue and the fact that I catch every bug I'm exposed to so I have a high absentee rate. My rheumatologist who has usually been very understanding, said that she would think I should at least be able to work part time. I suppose I could but then I would have nothing left for my husband and kids. I told her that even being on meds I just keep feeling like I'm sliding gradually down hill. Is that the typical progression, just gradual decline? I have no major organ involvement but have Raynaud's,
occasional thrombocytopenia, frequent pneumonia/bronchitis, and a "foggy" brain. I guess I have probably complained enough, this has been my whine session but believe it or not I'm normally pretty upbeat.
Welcome to our forum. First, there is no such thing as a whine session on this forum. We are here to listen to you, answer your questions and to help you in any way that we can.
Unfortunately, no two persons exhibit the same symptoms with this disease and our progress (or regression) is never the same. That is one of the most henious things about Lupus. There is no normalcy to it at all. Believe me when I say that I truly understand your statements about fatigue...it is debilitation and can send you into a state of depression. Just know that you are not alone and that there is someone, somewhere, who is sharing some of your symptoms.
There is a lot of information on this web-site and in the posts. I hope that you are able to find some answers to your questions. Otherwise, we are here for you when you need us!!
Peace and Blessings