Welcome to Neuro Talk. I am glad you found this site. Lots of compassion and friendship here. I am sorry for the painful condiditon you have. I don't know alot about it, but I would guess seeing the very best Neurologist would be the best bet. A pain management doctor would also be of help. I go see a physiatrist, who deal with not only pain, but the whole person on a cellular level.
I too live alone with some pain. I am alot better than I was. However being by yourself is a challange. I have my son in the area who helps me. There may be a community center, that may have some ideas in your area to get you a bit of help. You will never be alone here on NT. Jo*Mar, and MrsD both are moderators, and may be able to find the correct forum to try and help you. I will look up your condition, as I had not heard of it before. Please feel at ease here. Welcome again, ginnie