My dr. called
Hey....unusual as it may sound, my dr. called me about an hour ago. He was going over my results from the blood tests. He said all of it came back fairly normal. However, he is still concerned that I am not feeling much better. He told me to give him a call next Wednesday and if I am still feeling the way I do now, he wants me to see a rheumatologist. Does this sound like what any of you have been through? I just want to make sure that "I" know what needs to be happening....things that I should know. All of you seem to have such great insight in this area. I know it is not normal to hurt when someone touches you. It is not normal for anything to last this long. I am feeling better. But, there is something wrong with me. I know my body. It is not "in my head". Does this make any sense to any of you?
Oh yeah.... My doctor says that my blood work shows I am in a remission... However, I feel like crap almost constantly... :P
That is what I don't understand about flares... Are flares just when your blood work shows something is up? OR can it just be when you feel crappy? Even if your blood work is good?
This disease is so confusing...
My drs can't go by my bloodwork usually cause on the days I feel REALLY bad the bloodwork will come back "normal". But on my good days it comes back wacky. So strange but symptoms for me do not agree with bloodwork at all. I'd ask to be referred to a rheumy now, and not wait but that's just me. Good luck.
For me, remission meant that I could manage the symptoms without having to take steroids, immunosuppresants or quinines or any of the myriad of other drugs prescribed for our symptoms. My ANA was negative, but I still suffered from many symptoms (pain, fatigue, sun sensitivity, achy muscles, Raynaud's). It's just that, by changing my lifestyle, my activities, etc, I do not take medications for those symptoms.
So, like Solesinger, my doctor's tell me that I am in remission..but I feel like crap quite often. I am not, however, in remission from Fibromyalgia - So I do take medication for that!!
It is dizzying and confusing, I know. But, as Lupus is different for each of us, so is our version of remission. That, too, is different for each of us.
Best of Luck
Hi Meg! It sounds like we have a lot in common, I responded to your question about pain. I have also been diagnosed with Raynaud's, and it wasn't until I found this sight and began doing research on my own that all my many, many, many illnesses in the past seemed to be connected. As far back as I can remember I have been sick with some of the strangest things-rashes, multiple childhood diseases like measles and chicken pox even though I had immunizations, all kinds of problems with my lungs, etc. Things that a child should not have. I have seen so many doctors just shake their heads while looking at my charts!! We never really got any answers. The fibromyalgia really shed some light on things, and that is when we started looking at Lupus. I have had a lot of tests done, but they have been inconclusive so far. I have to see a dermatologist next for a biopsy of some lesions (?) on my arms and legs. I also have to deal with the work issue-my job is physically demanding so sometimes I just CANNOT perform. Luckily, my HR manager is understanding and I applied for FMLA so the days I miss don't count against me, but I know how stressful it is to make that phone call. My immediate supervisor changes every couple of months(they use a rotating system) and I resent having to explain all of this to each one of them. I know it can get frustrating, but please remember that you are not in this alone. The people on this site have nursed me through many a bad day and most of them never even knew it!! Everyone is very supportive and Saysusie is extremely well-informed. She simply amazes me. I hope you get back on your feet soon and I will be looking for your posts-GOOD LUCK!!