My History and Possible Arachnoiditis
by Susan in Kentucy

I'm a 45 yr. old disabled RN with 16 yr. history of systemic lupus, RA, fibromyalgia, spinal stenosis, posterior column dysfunction, severe peripheral neuropathies, probable MS and an as yet undiagnosed inflammatory neurological disease, according to my rheumatologist.

I have multiple lesions on my brain, they say from the cerebritis/vasculitis. I had approx. 10 yrs. ago. I had a spinal tap back then that showed, among other things, oligoclonal bands. That's when I started having the pains in the arms and legs with numbness, and feeling like I've been plugged into a light socket.

As the years have gone by, the symptoms have escalated until in '94 when I had 2 epidurals for hip surgery. I have actually had 4 surgeries on the hips in 10 months but only 2 with epidurals. I spent 175 days in the hospital and am still battling a coagulase negative staph/resistant bug in my left hip prosthesis. My right hip is stage 4 osteonecrosis as are my shoulders, knees, etc. I'm not sure what has triggered its getting worse, but in the last 2 monthsI have severe, unrelenting, burning pain on my hands to my shoulders, and my, feet to my hips, patches all over my back and on my face. Of course, they are all already as numb as fence posts, but the pain is still there. I am on a duragesic patch - 75 mcg every 3 days for the pain in my hip (infection) and the osteomyelitis along with the pain. It doesn't touch the nerve pain. I've been put on neurontin 1200 mg. by my rheumatologist until I can see the neurologist.

It has barely taken the edge off, but I think we're on the right path. I haven't been diagnosed with arachnoiditis yet, but it is looking like I have that or something similar. I have read about something called "central pain syndrome" which is a possibility, but I'm pretty much leaning towards the arachnoiditis. I have noticed that noise, especially sudden noises, commotion, bright lights, and cold, trigger it to get much worse. Sitting or standing aggravates it and lying down and placing pillows everywhere, sometimes helps. I'd appreciate any and all responses, comments, suggestions,....... anything that might help me better understand or deal with this pain. It's driving me so crazy that I have no quality of life.

I'm pretty much housebound because I can't walk any farther than the door to the car. I can't go through a grocery store, or go pick up my medicines because I can't walk through Walmart. I can't lift my 16 mo old grandbaby. I used to be "supermom". No more. My kids and family just don't know how to take it and I really don't know how to help them. I was always the one that "fixed things and situations" for everyone else, mom and dad, aunts, uncles, cousins, kids, kids friends,..........I'm very depressed but I am able to realize what is causing it. I'm not suicidal yet, but......if it weren't for my mom and dad needing me, my 25 yr. old daughter(also an RN) needing me to help me with the baby she is severely developmentally disabled and has seizures and her dad, my daughters husband, is on the road), my mentally ill son needing me, and my 21 yr. old daughter with uterine and ovarian metastatic cancer, needing me, I would give up. After all that time in the hosp. I swore to myself that I wouldn't allow myself to get in that type of situation again, but I'm afraid I'm heading that way again. I'm not a good surgical candidate due to the fact that the infection won't clear up. HELP!!! Does anyone have any ideas?

Susan from KY