: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

I'm about to see a new pain doc on Wed. & was interested in your post regarding the use of the fentanyl patch for your pain. I am wondering if the patch helps your numbness or weakness? Also, do you have any brain fog connected with its use? Can you perhaps describe the pain that is helped by the patch? Thanks.

TJean, I PM'd you....check private messages. BTW hello.

Dans story to me is inspiration. I may be wrong and have tried meds like Lyrica but rarely do I hear people get results from only one med like lyrica or similar usually if they work its a combo especially for break through pain.

Antonina: The fentanyl patches have controlled my 7 to 9 levels of pain like no other medication has and has been a life saver for me. It does nothing for numbness - I don't know of anything that does. Any weakness I have was not caused by PN but rather from the inactivity that PN causes. I believe in exercise and I do what I can including walking a mile or two every day. And no, these patches have caused me NO brain fog. What I get from these patches is PAIN CONTROL and no, I am not addicted to the narcotic fentanyl - not even after 6 years of using it!!! Most true chronic moderate to severe pain patients do not become addicted to their pain medications. See this Mayo Clinic article: http://www.mayoclinic.com/health/pai...56/UPDATEAPP=0 - and here is more info: http://www.nytimes.com/2007/06/17/ma..._r=1&th&emc=th and http://www.aarpmagazine.org/health/prisoners_pain.html and http://www.medscape.com/viewarticle/530606 and the list goes on.

I hope that you will soon find the relief that you are entitled to. Physicians are scared out of their minds about RXing narcotic drugs for fear of being busted by the DEA. Fortunately there are still physicians out there who are following all the rules and properly caring for their patients. I hope you find one soon. Good luck and keep us informed.

I have had the same experience as Dan. The fentanyl patches literally saved my life.

I wish someone would try these patches on me. No meds have worked on me but the docs I see either want to do nothing just small low key meds or big things like scs. When I was on vicodin they were like your young and its not good. Well I won't make it to 75 like this. I would rather have quality then quantity of life. I was hoping the internist would precribe this but she said she doesn't deal with pain and I have to go to pain management which I have to 3 plus.Dakota I am glad its working for you cause I know you felt pushed into the scs. I think all things have its pros and cons and everyone in there situation needs to review the options

Welcome, and thanks for your post! While your situation is more extreme than mine (I've not been bedbound, just frequently housebound, and only use a wheelchair occasionally), I can relate all too well to the false diagnosis of a somatic disorder by someone who didn't bother to look at my medical records. This was made worse by the fact that she was being paid by a long-term disability insurance company to say that I was engaging in symptom magnification for financial gain (completely untrue, of course).

Can you tell me the difference between CPS and fibromyalgia? Because I was diagnosed with fibromyalgia in 2000 but do not respond to any of the usual treatments for it. Not that I'm anxious to undergo any more treatments or tests (I just finished a stint at Mayo for autoimmune disease), but I would hate to labor under the impression when I have one disorder when it's really another.

I agree with the others that pain is an incredibly complex thing, especially the intractable kind. I think there is also a lot of overlap that doctors don't even know about yet. I just hope that technology advances to the point that a simple test can prove how much pain a person is in and what the origin or origins of it is (like the fMRI only better??).

fanfaire

I've wondered too--about pain issues & my first Dx : FMS . after I was hit by car, w/ TBI & other injuries. Like you I didn't respond well --couldn't tolerate or got allergic reactions to most of the meds tried (antidepresants, AED's, & others) . PT usally made me feel worse, except for warm water therapy which I'm trying again to access. Sleep problems continue despite many meds.... resulting in Fatigue, which can be my biggest complaint .. until I get those more intense flares & zaps of pain, which nothing seems to relieve....
anyway, 10 years later,
although many aspects of FMS seem very applicable, felt there was something else, or more going on. IF another or different Dx would enable/allow better more appropriate interventions & treatment, then I needed to find ... so in past few years, more DRs/specialists, & more meds & interventions -most disappointing but some meds have helped.

in process of trying to learn more, educate self, find ways to cope w/ what felt like a life long battle ... I stumbled on description of CPS and support group who seem to know more about it (and Pain issues) than most Drs. The group felt I met the criteria for CPS but no formal Dx.
Most of them developed Central Pain after having thalamic strokes but other trauma to central nervous system can cause CPS including toxins, TBI, spinal cord injury also MS & other conditions that affect Central Nervous System, and mess w/ those parts of the brain that TJean described in her post, resulting in central pain sensitization.

some believe this also occurs w/ FMs. the problem is in your head, not in the fibers & other connectors as the name implies. One Dr believes hypocampus is affected & shrinks (per his research w/ FMs patients using PET or SPECT scans saw [things in] Brain other technology didn't pick up]

others may be able to explain better as well as have different view but what I've learned is similar to what TJean shared-- RE: central pain sensitization--in both CPS & FMS, but what causes this may differ.

for me, the cause of my pain was traumatic injury to my brain as well as other body parts, from accident. I feel that Central Nervous system is the big player in my pain, but also other systems are affected, like peripheral . I have multiple med issues, most involve Pain, some w/ DX , that may be accurate or may not, be totally inclusive.
There is overlap and many disorders can/do occur concurrently. we may not have ALL or most appropriate Dx that will enable better or Best treatment available. We need more... research, understanding, education.

check out the sites/Links in prior posts for about CPS.

Hope we'll ALL get what's needed soon...
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