:wave-hand: I cannot agree strongly enough about the benefits of of these site :i-agree:

Genn: I agree with much of your post but I would like to point out the interaction of the hypothalamus and thalamus can actually precipitate centralizing sensation trophic changes to the damaged axions and dendrites such that they saturate to local area with (argh cannot rem the chemical messenger's name) to co-op other nerves to pass the message a long. This hyper response it's self will elicit trophic responses both to the peripheral and central nervous system setting off the chain reaction that actually causes trophic changes to the hind brain, and around we go. The noxious response to normally pleasant can readily progress to the delay with over shoot response of central pain. Wouldn't it be nice if neurologist actually studied the biochemistry of nerves? Then they might actually understand that motor nerves become hyposensitive with damage where as sensory nerves become hypersensitive. You'd think they'd never burned their mouth's with hot chocolate.

I've been Dx'd with CPS since 2001 after being incorrectly dx'd with fibromyalgia and without these people I wouldn't be where I am today (getting "better" - read more function and better coping skills, not less pain). I did benefit from fibro centered treatment, since I've suffered intense muscle spasms since I was hit in my first rear end collision. I take an insane amount of medication; anticonvulsents, opiates, analgesics, and muscle relaxants - antispasmodics.

While these have significant side effects (and I have a lot of "resources" to cope and get the "best bang for your buck"), they're better than "hurting" so bad that you bang your head against the tub in hopes of knocking yourself unconscious just to give yourself a little breathing room from the overwhelming negative sensation while knowing full well you may go too far and die. One way or another, you get a little respite. How the American medical system can think intractable pain isn't lethal is beyond me since the risk benefit analysis is similar to someone doing intense chemotherapy?

I've had to do most of my therapy myself, so I have a lot of work a rounds. Plus, I'm a research molecular geneticist, so I understand the science behind this weirdness. Additionally, I've had to change doctors yet again as my insurance coverage changed and my great open minded doctor needed to retire since her also has disabling neurological pain. (Do you all *hate*having to attempt to detail what's going on on those little diagrams they have you fill out repeatedly, just to have them require you to detail all the little nuances you work so hard to distract yourself from in attempt to stay sane. I really wish i lived in Europe at times.) This time my PCP, sent me to a neurologist who had a fit when she saw my medications. She sent my to a physiatrist (physical med doc), who sent me to a rehab psychologist.

This idiot rehab psychologist who professes to be a scientist, decided after an hour interview, not having my medical records, and an not one of these doctors did a physical exam (though I was too "hot" to be touched until Nov) that I have a somatic disorder. "Much, most, a significant amount of my pain is due to anxiety about interacting with new people and being out in the world" since I've been house bound for 7 years and bed bound for 5 of them after repeated falls when my legs or arm electrified me and I lost my balance on my forearm crutches. I almost was run over in the middle of the road because I couldn't get up after the fall since the street was covered in wet sand and fallen leaves and needles.

They even asked what I wanted out of my rehab. To which I said "OUT"; the tools to be safe outside of the engineered environment I have at home. I wanted a wheelchair or some other portable place I can sit/lay down regardless of where I am. One that had the correct configuration to prevent the risk of becoming permanently paralyzed and over sensitized when I'm out. This would allow me to take paratransit too. Plus I wanted PT as I've had to design my rehab by myself and it would be nice to see if there's a better way to do things.

I bought a used chair off of Craig's list, but it had bad batteries, which I couldn't afford to replace. So I turned to social service agencies, who wouldn't pony up the $300 for the batteries, but would help with getting a new (to me) chair. So I found a place called the Donor Closet, which is like a ADA thrift store, that had a powered chair that was much better for me for $550 (they refurbish the chairs). The community liaison with my fire department came forward to coordinated getting the funds together within a week. I've even got the construction of a ramp and the paths that I need to get to safely get out of my house organized.

I have a lot of experience and ideas that may be helpful to others, from dealing with or without the medical establishment to getting resources together. I'm going to start volunteering at the place I got my chair, so I'll be learning even more tricks. (The chair is giving me the means to prove the idiot doc wrong. I've even been able to cook, clean, and fetch groceries).I'm available to assist via email so don't hesitate to let me know what you need.
This is long but you'll get the idea about what I can understand and possible do and we need to band together to help each other because the medical community et al as a whole doesn't.

Good night everyone. This has been a wonderful way to pass a sleepless night (broke my foot, we think, when I ran over it as my chair picked itself off the wet ramp. Good thing it's the one that's got the most neural deficit.) Para transit van is due in little over an hour so I can get it x-rayed - and casted.
TJean