First entry07/16/2008 01:07:32
I was diagnosed with lupus in March/April of 2007. I had the positive ANA, I had all the other trappings thrown in just to make me miserable. It all started on this last flare with my middle finger of my left hand. It was the one I used to click on the turn signal and it hurt to do it and it was swollen all the time and it continued to build in when it and the other joints in the hand, wrist elbow hurt. The other side hurt too but just didn't seem quite as bad at the time. This was in October November of 2003 that I started having these strange symptoms. It followed a pneumonia like episode in September that hit overnight, knocked me out for about 10 days and kept me down for about 4 months with the weakness. The sweats followed, they were unreal. I started thinking I must have AIDS. Being in a long standing monagomous relationship I talked myself out of this. THe pain built to a point that there was no relief to be found in any position, with any medication. I dropped weight quickly, had no strength and was exhausted. I lay on the couch for the majority of the day and in bed for the rest. I actually prayed that someone would cut off the parts that hurt but no one would. When I finally broke down and listened to my husband that yes there was something wrong and I needed to go to the doctors my GP put me on a 10 day supply of prednisone. He said if I had relief then it was probably an arthritis type thing rather than the fibromyalgia I had been diagnosed with many years before. I woke up the next morning and I felt better. I was relieved and terrified all at once. We, my husband and I, read all we could on RA and expected to be maybe moving a bit slower for me but that I would still be okay. At 10 days when my prednisone stopped the effects wore off fairly quickly. I was sure that I would not make it until the appointment which was 2 months out. I did make it. The doc said it was RA. Okay fine, I proceeded with no meds except tramadol and a prayer. I stayed relatively calm over the next year or so with a few strange lung events that I now know were not colds or normal events. I was exhausted. I was swollen, I was sick all the time. I switched doctors and discovered that lo and behold I had lupus. It explained many things. I have worked my way through many different meds, between having one or two cause my liver to flare or being allergic a few more we have come to settle on no prednisone - the antidiet..., cellcept, tramadol, topomax for an essential tremor, lexapro for anxiety and depression, (Vitamin D -- I am through the prescription now), They tried lyrica but I am really not overly impressed.
I have extreme sensitivity to the sun. If I am wearing light pants and especially if they end up being splashed by water the sun will give me a reaction and my legs swell up. I get this strange rash all over the legs. The fluid build up is amazing. I have shoes that are a mens size 11 - I am a womans size 9. I have been bald once in the past year and am working on the second time right now. I have had periods that were non existent to nonstop over the past year. I went 8 months with nothing then 3 months of on for 7 of 10 days now I am back to next to nothing and losing my hair. Go figure. The one thing you need with this illness is a sense of humor and the ability to put those around you at ease.
My specialist in boston was an RA specialist who kind of aggravated me. He sat there and said because I had a a negative ANA after many many positive ANA's that I didn't have Lupus - I actually wanted to ask him if he was okay.... maybe he had been into some of the experimental drugs? I know that talking to every other doctor, specialist and fellow that lupus plays games and to have him just blow me away after a 4 hour car trip to discuss this really ticked me off. The Interstitial Lung Disease was in remission which is what we had been praying for but not what my chest pain was telling me. I got the riot act about being overweight which I am but mostly because of the prednisone diet ... you walk by food and it jumps on you and bonds. I had lost a ton of weight on ww before I went on the prednisone. I gained 50 pounds in 3 months on that awful stuff but I felt better on it and got some function and pain relief. The worst part of this is the pain, the cognitive mess, and the exhaustion. My sleep studies are ok. I had 10 times of stopping breathing on my back in an hour but 0 on my side so they said sleep on my side (sew tennis balls in my clothes or if you sleep nude wear a fanny pack with balls in it - I am serious!). So the fatigue is not from the sleep apnea.
Laurie in VT
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