I know! I know! what you mean and how sick you feel, and sick fatigue is a perfect way to describe it. I just said similar words to my neuro and then my rheumy. That I could NOT quantify to them how sick I feel ALL the time. That hey, I look fine! Cheeks pink, overweight.. (yeah, I know, if I just lost weight my joints would feel better), gee, prednisone or cellcept so I can live, or collapse in bed and die)? I once asked my rheumy why we have to keep doing blood work that is usually negative or low/inconclusive, and he said just because my labs are negative doesn't mean I don't have lupus. ( I had a positive ANA and lost 6 babies from antiphospholipid antibody syndrome), and that autoimmune illness is like that. And I am blessed I have such good drs. Primary family doc, immunologist, and a very nice neurologist I have only had to see 3 times since I was diagnosed in 2005. Since I have just had to resign my job because I am literally too sick to work, and am just doing my disability paperwork, I opted to stay on my maintenance dose of 5mg of prednisone, the devil I know rather than the devil I don't, and not start cellcept yet, as summer is my most well time, and I will not have to live with the stress of my job and hope to feel better enough without either one. My bone density is dropping steadily from the long term steroid, so here's hoping and God knows. And interestingly enough, my B12 level was critically low at 130, and my vit D will not go up over 30.
hugs, sue too
ps. don't give up, document daily, search till you find the right dr, take pictures of rashes or sores, (or anything funny for the fun of it) Beg your dr. to treat the symptoms and not the lab report, they can do short term trials if they want to, my plaquenil and synthroid helped immensely, the dr. had to see the thyroid peroxidase report first, and my hair finally stopped falling out...
pps. my neuro had a great cartoon on his office door... pt. on exam table saying.."Hi Doc, I am only here for a second opinion, I diagnosed myself on the internet!"
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.