Unfortunately, I have very severe spasms that make my arms and legs extend as well as jump up and down vigorously. When I told my pain management physician about what my pain felt like here is how I described what I feel: My pain feels like I am being stabbed with knives repeatedly throughout my body and these knives have penetrated through to the other side. These knives have fastened me to a very large slab of dry ice and I am only dressed in my bathing suit while attached by the knives to the dry ice. Unfortunately, my pain has gotten to the point that even light touch or cool water especially triggers me into severe pain of a level 9 to 10, which is unbearable and I am also very spastic. Usually, I am able to live with a constant level 8 pain and try to make believe that it is not there or effecting my day. I take enough medicine to treat an elephant in nerve pain Neurontin, Lyrica, Zanaflex, Valium, Prozac, Savella, Methadone (not for addiction but nerve pain), Opana (Long Acting Morphine), Butrans Transdermal Patch (Long Acting Morphine Transdermal Patch), Voltaren Gel, and Celebrex. I am scheduled for surgery to implant a device that is called a spinal cord stimulator. My hope is to be able to reduce the amount of pain medicine I use, because I am so scared that one day I might accidentally fall asleep and remain sleeping if you know what I mean. I stop taking all narcotics 4 hours before bedtime and take a sleeping pill to get through the jerky movements of my arms and legs do throughout the night. I lose a lot of sleep but I am alive. I see from your profile that you live in Arkansas. I would have given you my pain management doctor, but I live in New York. Any New York Residents, Alexander Weingarten, MD is Board Certified in Anesthesiology and has been elected as a fellow of the American Academy of Pain Medicine http://comprehensivepainmanagement.org/index.html - Good Luck Everyone!! My prayers are with us for a cure to myelin destroying illnesses!
I hope that I have been helpful to anyone in need! I think that is my purpose in life is to provide help!
Suzanne or Suz