My worst most persistent pain was from below my bra to below my waist. My body couldn’t tolerate sensation no matter how slight. I felt like the fairy tale princess who could feel the pea below 44 mattresses. Nothing tight. For years I couldn’t wear a bra, jeans or belts. Good thing I worked in a robe. Sitting down was painful. I ate standing. I got a podium so I could stand in court.
I had a wonderful neurologist. I called him often crying. He tried a variety of meds. For me morphine in pill form worked the best even though sometimes I would lie on the floor and cry from the pain.
If that sounds like hell, it was, yet I consider myself lucky. One-third of people with TM remain paralyzed forever. I can walk and hike.
After ten years, I felt better and wanted to lower my dose of morphine. Another kind of hell started when I was referred to pain doctors. In their defense they see mostly addicts and have been lied to often by patients who want more drugs. Although I chose to lessen my dose, I was treated like a drug addict. I had to pee in a cup and sign a contract used for people with addiction issues. The contract assumed you were lying about drug use. I had a disease yet I was treated like a criminal. After seeing three pain docs I gave up on them. I did get off morphine with the help of my primary care doc.