Adhesive Arachnoiditis

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My disease is not Fibromyalgia. Although very much like the over stimulated nerves in Fibro, my nerves are destroyed.

I used to be a nurse, an office and apartment manager, and work a 3rd job for a nonprofit organization, the wife of 28 years to a man who has been physically disabled for nearly 24 years, a mother to a 28 year old daughter, a 25 year old son and a 38 year old step son, a grandmother of 8 1/2 beautiful grand children, a sister, a daughter and a friend. I am disabled. My disease is on the rare disease registry. It's called Adhesive Arachnoiditis. This disease can be caused by a doctor, an injury or another disease. Mine was caused by a surgery I had to a ruptured disk in my neck. During the repair, the doctor nicked the spinal column allowing blood to flow in with spinal fluid. Since those two don't mix, the nerves in the base of the spinal column grouped together and scar tissue formed around them preventing proper flow of spinal fluid. These nerves control your legs, bowel, bladder and sex organs.  There is no cure. I have chronic pain to my legs, hips and low back. On the pain scale of 1-10 my pain, on a good day is a 6-7.  Women, imagine being in full blown labor 24/7. Unrelenting, with stabbing, piercing, gnawing spasms from your back to your toes. Men, imagine having a orchiectomy or a vascectomy without any anesthesia. That's the only way I know how to explain my pain.  I am lucky and have found a doctor who acknowledges that this disease even exists, many others have not been so lucky. I take Oxycontin twice daily and Hydrocodone for break-through pain. I suffer from OIC, Opioid Induced Constipation, so take multiple meds to relieve my bowels. My bladder does its own thing, whenever it wants, wherever it wants. I wear incontinance pads 24/7. I am 53 and have not had any sexual urges for 15 years. My toes spasm numerous times daily, curling under and over, spreading apart and causing pain shooting up my legs for unrelentless hours. I feel like I am walking on broken, hot glass. My thighs get a burning sensation like someone started me on fire. Some days, I need help to get out of bed or out of a chair. I always use a cane. I am lucky, some people are paralysed. My disease can't necessarily be seen by others. They think  I'm a Drama Queen. I'm Disabled.