I do get sort of rashy or splotchy red after being in the sun, and tempted to scratch a bit (but I mostly don't, I'm good at resisting). I'm very fair skinned, and burn easily, but this has been different the last couple years. I figured it was one of my medicines doing it to me. I do have many of the symptoms of lupus, but they're also the symptoms of many other diseases, none of which are any better choices.

That one time the sed rate was 130. Four to six weeks later, when I got tested again, it was normal. I often think that my levels "sputter", going up and down irregularly, but so things get bad, I finally go to gp, which sometimes takes a week or more to get appointment, then he orders bloodwork but it can take more time for me to be able to get to have the blood drawn (I can no longer drive, there's no public transport here), he says go to specialist, it takes weeks to months or more to get in there, by then things are different, and they toss me aside.

There are no good rheumatologists here. There is one group in the area, owned by the hospital corporation. That's the appointment I have in four months, the day before Christmas. Next choices are an hour's drive away, and I can't drive and volunteers rarely will go that far. Hubby can't keep taking time off work, even tho he uses his vacation time it looks bad, and his company has just undergone a merger and is moving people all across the country in the next year, which is why we will be going to North Carolina (from Connecticut), unless they decide we are more of a liability than asset.

Lupus is possible. Polymyalgia rheumatica would fit much of this, too. Synovitis/synovial inflammation. MG. lots of things. all autoimmune, all rheumatic, and gee, all begin basic treatment with steroids, and yet no one will consider doing anything without a positive lab report.

When at the gp this last time, I asked that he write the rheumy a note telling him why I'm being referred there, so that I don't have to explain it (since they won't listen to a patient anyway) and instead of saying, "tell me if its RA" or whatever, say "can you figure out what it is" because with the "tell me" approach, they just say yes or no, and if no, it's "no, so go away" rather than offering any other ideas. GP said, "it doesn't work that way" meaning he can't send me to have "mysterious, probably rheumatological problems" examined. They have to send for cause. This corporation has things so screwed up.

A couple of times, my back pain got so bad the gp gave me a 6-day Medrol pack, methylprednisone, in steadily decreasing dose (6 pills day 1, 5 pills day 2...) and those first 3-4 days I am in heaven! Superwoman! Nothing hurts. Nothing is weak. Breathing isn't hard work. I can walk, I can talk, I can use my arms, I can even sleep.....then as the dose lowers it all comes back and by the time it's done, I'm back to being me. The first time, it was wonderful, it was like a vacation from being me. The next time, it was horrible, as I knew how long it would last, and when I got to the end of day 4 and everything was beginning to return... it was just cruel knowing I could feel better but had to give it up again so quickly.

Somewhere I have all the lab reports. I used to keep an orderly notebook, but when it got to be 4" thick and no one was doing anything anyway, I just sort of shove things into the bag that holds it and forget them. The corporation just switched to a new portal system 5 months ago, and it's all screwed up and doesn't have any older info available anymore. As well as, I don't know what they did to my records, but they have become a complete fabrication and fantasy story with this change. Going to be a nightmare trying to get it all straightened out, I think they crossed my info with another patient's. I asked for a printout of the portal info so I could write down the corrections, they couldn't do that, but offered me the form to request a copy of ALL of my records (I've lived here since 1988). Um....no. Not helpful. My arms are too weak to lift it and my eyes are too screwed up to read through that much.

I guess I will find out what newest rheumy thinks, in late December. This is an older doc, supposedly a very good diagnostician, and he has an ego bigger than the earth can hold, so hopefully he has enough confidence or arrogance to disagree with or disregard what the other rheumy's in the office have said in the past. At least my gp didn't order any bloodwork be done first, so I don't go in condemned by that this time. It being the day before Christmas, hubby is off work and he will come with me. And I will be a good little girl and behave myself. We only roll our eyes and make fun of the idiocy after the doc has left the room.