My heart goes out to you as I know how frustrating this can be sometimes. I have the same issues, especially when I am not feeling well with a flare or if I have been in the sun. I am swollen now and I know others that have lupus that swell too. I too show normal EKG, kidney function etc. I am also severe Vitamin D deficient which can be a major factor in how our nervous system works, so I would demand that test. I cannot be in the sun at all, I get swollen sick, etc and swell and rashes. I take an herbal diuretic pill to help with the swelling and have found Claritin works to since I swell like I am having an allergy to something. Hang in there, but trust you are not alone. It will come down.
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescription 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.