I am so new to this ... I have been fighting this big nasty (MCTD/Lupus SLE/polymyostic arthritis) since I was 12 and I am now 32. I have been doing great up until lately. I work full time and sleep all weekend - not much of a life, I know. As of late, the pain has become unbearable - I feel like my bones are breaking and my skin burns all the time anymore. I do not mean to complain but it seems to be more than what I can handle. I am on the standard cellcept/plaquenil/prednisone but to be honest, the medication is no longer helping.. I still seem to continue going into this downward spiral of sheer hell. Anyway - hi!
Hello and Welcome CandyPants!
What you describe is not unfamiliar to many of us. I have some of the symptoms you spoke about; aching bones and burning skin. My symptoms are not due to my Lupus, but due to the fact that I also have Fibromyalgia. Perhaps you can mention this possibility to your doctors to see if you may also be suffering symptoms of this (or another) overlapping illness. Unfortunately, once we develop on auto-immune/connective tissue disease, we are prone to developing others and they overlap one another.
Please let us know what your doctor says. I wish you the very best.
Peace and Blessings
I have exactly the same medication as yours. I have had SLE for 5 years. Until now everything is under well control. (I hope)
I work full time as well, I found when I am too stress or over-tired, pain is everywhere, now I started to have migraine, and short memory. Even I want to deny, but sleeping is only way to help. We have to slow down.
You didn't mention about UV.. I don't know if I am influenced by doctor or some articles I read, I feel like a vampire, when I expose to the Sun a little longer, my skin feels tingle. So I avoid the Sun as much as possible.
If our lupus is re-active again, I guess we have to discuss it to doctor. Indeed, I am thinking to see another doctor for second opinion because my doctor frames me that I still have pain because I don't want to work less. She thinks I need to rest more (do not work/work part-time) in order to calm my lupus completely...