I hope the rheumy is able to help you today. If not, you may want to see a neurologist. I had similar pain years ago in my arms. The neurologist later found that I had sensory nerve damage, the actual diagnosis was peripheral nerve damage. When it first started, if anyone or anything touched that part of body (upper arms), the pain would make me scream and I would literally fight back as if someone was attacking me. And yeah, it makes you mean. Couldn't phathom having it all over like you do, I really feel for you. A year or two later I ended up loosing all feeling in my feet, legs, arms and hands. Now, I'd say about 5 years after that, I am able to feel in my arms and legs normally, but still some problems with the hands and feet. This is just my story, but my hope is that your pain doesn't stay a constant feature in your life. I do know the doctors originally thought I had fibromyalgia. Have they tied nerve-blockers to see if that medicine may work? It is worth a shot. It may be something like nerve inflammation and Toradol may be of use too. I swear nerve pain is the worst pain. It is really overwhelming and makes you severely depressed after time.
Try and hang in there. I realize it may be the last thing you want to hear, but I really feel once the doctors figure it out, you will get relief. Your in my heart and prayers - Kristin
Dx: Lupus CNS 11/2005; Current - kidney disease, enlarged heart, MVP/regurg, dementia; GERD; vision loss, narcolepsy, rheumatic arthritis, IBS, ovarian cysts, raynauds, EBV/CFS, inflam. liver/spleen. Rx: Atenolol, Aricept, Flexeril, Motrin Previous-rashes, hemi-pelagic migraine, sensory loss, amnesia, PTSD/Dep., host of neuro problems, pregnancy compl., False pos. syphilis, fine speck & homogen ANA; IgM; staph/strept infections, colonitis, pancreaitis, gastritis, costochondritis, pericarditis, Hashimoto's, dyspnea, hyper/hypotension, lipedemia, ulcers, pneumonia, anemia, Scleroderma symptoms, vein swelling, etc.