Complex Regional Pain Syndrome

Thanks for the definition, Sally. If Richard has a lot of pain it might be Porphyria. I don't have as much pain with porphyria as I had when young, as the hormones of youth are one of its worst triggers. When men get it, like Richard, it is rarer but more difficult to handle.
I was constantly looking for pain help, and failing, since I could not take most medications for pain. I finally found one when I knew I had porphyria and found the right one on a safe/unsafe drug list...but I struggled with little help and lots of ridicule for years. I tried every New Age technique available...meditation, Reiki, Jin Shin Jyutsu, Touch for Health, and every off-label pain med, such as Elavil, which caused dramatic but short paralysis. Jin Shin and Touch for Health were among the things that helped.
My husband was kind to me throughout this long search. I miss him and I know you miss your DH, Sally. Do you hope to meet him again some day, as I hope to meet mine?

Could this be CFS (Chronic Fatigue Syndrome).

It's a neurological disorder that is viral based. It can cause any number of issues including fibromyalgia.

There's a great doc at Stanford University doing great work with this. If you go to youtube and put in stanford univ and chronic fatigue syndrome you can view a couple of videos that he's has done, one is an hour long presentation he's giving to other MD's...it's very interesting...you might look into it,,,can't hurt..

I hope you figure this out...hang in there..

Yes, I like to kick him in the shins for leaving me so early.

Thanks everyone for your opinions on this. I just got a clearer picture of this. I have a dx of CIDP or chronic inflammatory demyelinating polyneuropathy. They want to start me on IVIG. I had also looked up information before I got the call saying I had the protein in my spinal column. Has anyone had IVIG? I know it is expensive so the insurance will have to pay or I won't be able to have it done. Again thanks all. You know sometimes it takes awhile to get someone to listen to you. Peace and love.


Richard

Richard, we love to help and receive help, so come back and tell us what they find. It's fascinating (and cruel) that you have this CIDP. That sounds like an umbrella dx for several or many diseases. But now you know you have something--not imagination. I have not taken IVIG but some here have, mostly not for MS but for other things they have. Most of us, I would say, have more than one disease, especially if we've been "collectors" for some time.

Richard, have you been seen by a Rhumatologist?
My mother had trouble absorbing B12 and it had to do with her digestive track. She had to receive regular B12 shots. She had a different autoimmune disease that affected her G.I. tract. Her symptoms do not sound like yours however; B12 or any vitamin deficiency could have a GI issue to blame.
I'm sure they checked your anti-nuclear antibody (ANA)?? This test tells us we have inflammation going on somewhere such as Rheumatoid arthritis or autoimmune issues where the body may be attacking itself.
Please keep us posted.
It could be a lengthy process to find the culprit.