@gmaw4: Agree, very hard to find someone in a similar condition. The one with the Shingles is my daughter. She got them at 21, now 34. The pharmacist couldn't believe it and asked to see the rash that spread around her thoracic back area, before he would fill anything. She has been through much of what you have been through.
She actually had cardiac ablations for Wolfe White Parkinson's Disease.
She is married, and her husband couldn't afford any kind of extra expense related to stem cell therapy….I pay for all her asthma and pain medications as it is. She does use marijuana in the AM, and then the Oxy compound her pain management Dr. has made in Mass. and mailed to her in the evening.
She teaches Yoga, and that helps her pain somewhat. Nice, only in a symbiotic way, to know there is someone else in the same boat. I pray you find some relief.