New to this forum and wondering if anyone else has had their Lupus diagnosis changed to Undifferentiated Connective Tissue Disease? Not sure of the difference. I am really frustrated right now because my Rheumatologist throws around Lupus, UCTD, and Fibromyalgia labels but than discounts and minimizes my symptoms. It's not so much that I need a "label" to blame something on, it's just that I'm the sickest I've ever been and I'm now wanting and needing to really educate myself on things that I can do to improve the quality of my life. I know that symptoms blend between all three conditions, however autoimmune can be treated with prednisone (which I went off of over a year ago), where Fibromyalgia has no magic pill (Lyrica didn't agree with me.) I don't know if I'm under-medicated, or if I need to go in direction of alternative medicine, diet, and lifestyle changes (although I'm so fatigued and in pain I don't seem to be able to do anything as of late.) I'm feeling lost and hopeless and would welcome advise. Currently have therapist & psychiatrist and massage when I can. Other than that, spend a lot of time in bed and am unable to do much activity. I'm caught in a viscious cycle of not feeling well and being fatigued and in pain so I rest in bed, which makes me stiff and weak and in more pain, so when I try to get up and around and be productive I feel horrible and need to rest in bed again.
Lupus and Reynaud's Syndrome 2002; Fibromyalgia added 2006; Lupus diagnosis changed to Undifferentiated Connective Tissue Disease in 2007; Gastroparesis (stomach paralysis) 2007-2010; Lifelong struggle with depression; Anxiety with panic attacks since 2008.
Medications: Plaquenil, Fentanyl patch, Tylenol, Aleve, Methocarbamol, Klonopin, Wellbutrin, Microgestin, Kava, Vitamin D, Miralax, Multi