I posted this on the Chronic Pain and Lupus forums, but a friend told me I should post it here as well...
"Hi. I feel like you all know me already. Many of the posts I read paralleled my story in so many ways.
Here's a quick synopsis of me. (as quick as I can be, anyway) I am 37 years old, don't smoke, never have. Haven't drank in over 7 years. Never did drugs. I am a special education teacher and I work with the Muscular Dystrophy Association and the Wheelchair Hockey League.
Ten years ago, (when I was 27) I had Stevens Johnson Syndrome from a reaction to Sulfa (in the form of Bactrim) and lost all the mucus membranes in my body. Spent a long time in the hospital and have developed many medical issues since.
I was diagnosed with type 2 diabetes when I was 30 and have been able to control it pretty well with medication and diet. A little over two years ago, I started having pain issues and my primary doctor referred me to a rheumatologist because he thought it might be fibromyalgia.
The rheumatologist actually found through lab work that I have lupus (SLE). about the same time, I developed a constant pain in my right thigh. Some days I was unable to walk without a cane. The intensity of the pain has come and gone for the past two years, but has never gone away. I have had MRIs, EMGs, bone scans, x-rays, ultrasounds, etc. to try to figure out why it is there and every test comes back negative. I have seen rheumatologists, neurologists, chiropractors, pain specialists, and no-one can figure it out. University of Michigan Pain Clinic was totally useless. They never returned any of my calls after my initial consult. I even went to the Cleveland Clinic a few weeks ago to meet with a pain management specialist there, and got nowhere.
Over the past few months, I have developed excruciating pain in both of my legs, from hips to toes. Again, the intensity changes, but it is never totally gone. Right now I am in the middle of one of the most painful times. This is the second really bad "flare" I have had. (I have really learned to hate the word "flare" as a lupus patient. It doesn't do justice to what I am feeling.) I can't really describe my pain in simple terms. It's burning, tingling, twitching, cramping, kicking, stabbing, exhausting, pressure. I could probably keep adding words to that list. I've even fallen a few times because of loss of balance and the overwhelming pain. NO medications have helped. I've tried mobic, requip, cymbalta, lyrica, pain injections, and many other pain meds. Vicodin and skelaxin used to help me sleep, they don't even do that anymore.
The doctors say I don't have RLS, avascular necrosis, peripheral vascular disease, meralgia paresthetica or any nerve or tissue damage that would cause this pain. I begged my neurologist to be tested for multiple sclerosis and had the MRIs done. They came back negative, and she refused to do any of the other tests. I went back to my primary doctor, because he is the only one who seems to believe me that I'm not making this up. He has been very honest with me and encourages me to keep searching for the right doctor. Honestly, I'm losing hope.
My professional, volunteer, and personal lives are being destroyed. Only a few of my friends really know how bad it is right now. The rest seem to be tired of me complaining and canceling plans when the pain is really bad. My family has been supportive, but they really don't understand, either.
I have an appointment scheduled with a new neurologist on Thursday of this week. Any suggestions of how I should approach this appointment? I have already decided that I want to have the rest of the tests for MS, but don't know what else to do. I am constantly searching online for ideas at this point and would welcome the help and support.
Thank you for being here. noahshark"