I totally know what you mean by feeling like your doctors have all the power. I cry every time I see my Rheumatologist. I leave her office, go into the hospital restroom and CRY for like a 1/2 hour before I can compose myself. And she is a woman, so I expected her to have a little bit more empathy or something. But she doesn't and it crushes me everytime. I go in there hoping for relief and leave feeling like a scolded child. She always blames how I'm feeling on my lack of exercise. How am I supposed to exercise when I'm in hot, fiery pain everywhere, have horrible fatigue, feel sick with virus symptoms almost everyday, and have 2 small kids to take care of. I know I need to exercise, but that is not what is making me sick and it is not self-inflicted.
I think doctors get frustrated when they don't know how to treat someone, and it comes off as they don't believe you. I think their egos get in the way of them being able to just say "I hear the difficulties you are having. It must be very difficult to be experiencing X, Y, and Z symptoms, but your symptoms are not clearly pointing to any clear diagnosis." They don't want to admit that they don't know everything. You have to tell yourself, a mantra of sorts, "Nobody knows what it feels like to be in my body but ME. My feelings and experiences in my body are REAL." Trust yourself, and I'm glad to hear that you have a support system. Sounds like you need new docs, but I know that's easier said than done. I wonder if you went to the ER, what would happen? I went a few months ago because I had severe edema and thought my kidneys were compromised. I ended up to be okay, but they still gave me tests, x-rays, and meds to help the symptoms temporarily and told me to follow up with my doc. My doctor office called me as soon as they were notified of my ER visit, got me in immediately, and took me much more seriously. It might be a little more expensive to go that way, but if you are desperate, it might be worth it to get immediate medication help. What you have going for you is that you have VISIBLE symptoms - scalp, bruising, rash. Are you on any pain meds at least?
Oh, and I'm right there with you about feeling like this will never end, and this is NO quality of life. I would never in a million years have thought that my life would be stripped down to so little. Just going grocery shopping with my kids (which is stressful and takes 2+ hours) can land me in bed for days. I've lost all my friends, my kids watch way more TV than I want, I feel like life is so unpredictable that I can't plan or commit to anything, and sometimes it feels like my husband and kids are living a life without me. The kids ask everyday "Are you sick today?" and are already showing signs that they feel responsible to take care of me (at age 5 and 8.) Life is full of guilt, fear, dissappointment, and despair sometimes. I have a therapist that I see once a week (when health permits) and that helps a lot.
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