To: Mrs. D.

You asked if the lecturer spoke about PN pain being central??

Believe me, when she started talking about Pre-frontal cortexes and the Thalmus , etc. that's when I had to really struggle and comprehend what she was saying.

From what I observed, these 20 or so people at the meeting, wanted to know if there is a cure on the horizon. They couldn't care less about pre-frontal cortexes. These were people who used canes and walkers and moved very slowly. These were people who, when they went on neurontin, got so drowsy, they had to get off of it.

One guy had narcolepsy and he still drives. He is on neurontin and lyrica.

There was a really skinny lady there who had just gained 20 lbs in 2 weeks on lyrica. And she was skill skinny.

Can you imagine my doctor telling me "Melody, you need to go on Lyrica". I would give him such a look.

lol

Kathi as far as your neurologist changing your diagnosis to central pain syndrome, from small fiber PN, isnt your pain caused because of damage to your small nerve fibers? You may also have central pain syndrome but wouldnt you also have small fiber neuropathy? The two do not seem to me mutually exclusive to me. For instance, if you broke your tibia and this set off a central pain syndrome (rsd), you would still have the broken broken bone until it heals or if it heals and also would have central pain syndrome.

Joe,

Actually and according to painonline.org they are linked. What that particular website helped me the most with is how the nerves act or what is occuring when they are damaged. It makes more sense to me simply because every test I have ever had came back negative for anything...as in idiopathic and she even said it almost didn't show up. Anyway, her reasoning is pretty much what Melody is spelling out about the brain and such. In any case, this is probably why meds like Neurontin and Lyrica didn't do a thing for me. Neither did the supplements. But the benzos worked! Xanax was tried as a last resort, and that was the ticket. But I didn't want to take 3 a day so she switched me to Klonopin and it has helped. I am just saying that being a spinal disorders person what I have read on this other site makes much more sense to me. So, it is possible I have both...no need to really differentiate since it is all neuropathic pain anyway. But it does explain to me why most meds did not work.

Bob:

I've got BALLS!!!!

lol

P.S. You HAVE to come to the next neuropathy meeting. We'd all meet each other and learn stuff. And they serve nice coffee in carafes. Do you know people came into the meeting room (they had just come in from Minnesota and Colorado), they had nothing to do with the neuropathy meeting, they just wanted to look out of the window and see the view from the 33rd floor. in NYC. Well, I went over to the window and I had to step back. I was afraid to look down. jeezz...

Ooooh, I just have to sound off about one of my pet peeves. I am well acquainted with meditation, have used it in the past and present, and know all about the brain wave changes. It has worked for me in the past for acute pain and mild pain. but give me a break! When you have pain at the 8-10 level, 24/7, it just can't handle it. Melody, at your next meeting, ask that doctor how she would like to undergo 12 hours of abdominal surgery with no anesthesia. Tell her that she could just meditate through it. I am sorry, but I don't think that people who say things like she did have any comprehension of the intensity of pain that some of us have, and it is very cruel to imply that if we would just put a little effort and self-discipline into it that we could control it all with our minds. It so diminishes the terrible suffering that many of us have.

Okay, so much for that rant. The info you got at that meeting was very interesting, Melody, and certainly generated a lot more information and sharing here! I hope you go again! Thank you so much for going and sharing that with us! It's a good thing that I do not live in NYC, though, or I would have ripped her face off. And normally I am just a sweet little Southern church lady. Boy, I would've liked to have been there if MrsD could have gone, too, though.

MrsD, did you report here once that Tonic water did not have enough quinine in it to have an effect on leg cramps? Or did I dream that?

Susan:

I agree with you 100% about the pain thing. I looked at the faces of all the people at the meeting and I said "oh, right, they are going to get up tomorrow morning, cross their legs in a yoga lotus position, and start chanting".

Don't think so. I looked over at Alan, when she was talking and he looked at me and said "don't even go there". See, this might work for some people but the people with the level of pain you are talking about, well, I believe the doctor was trying to say "hey listen, we don't know why lots of people get PN, we do know it stinks, we do know that some meds work for some and some meds do not work for others, but what do you expect us doctors to do?? We are not miracle makers, so until this little miracle known as a neuropathy cure comes along, then you have to do whatever you have to do to take care of your pain".

That's the message I got from this doctor. She was a very nice, very caring woman, but until the physician themselves have PN, then and only then, can they get up and say "Oh, have you tried meditation"??? She meant well, and we did appreciate all she had to say. But I really believe the people thought they were going to hear about some new "treatment plan" for PN.

She never went into the Rebuilder, or anodyne therapy. Maybe if she comes back I can ask her.

I almost did ask her "do you have any idea what's it like to have PN for 18 years like my husband, to never be a day without any form of pain".

But she DID come and she DID try to help out as best she could. And the whole thing was videotaped. So you never know. You might just find me out there on the discovery channel some day asking my stupid question. "Do we really need a thalmus??" lol

Melody

Thanks for clarifying Glenntaj,

What I really believe happened is that my CNS became vamped up from constant/severe pain from cervicogenic headaches. And this lasted for 3 years before anything was done surgically. Having CPS makes far more sense to me than having PN although I suppose I could have both. I need to get more clarification from my Neurologist. But I believe because of the spinal disorders and ongoing or subsequent pain is why she changed the diagnosis. And also because all tests were negative. Then she made mention that even with the QSART it barely showed up. And something else she said too...that I had fibromyalgia type symptoms but without having fibromyalgia! And why the anti-convulsants and anti-depressants didn't work well I just don't know. Actually, Neurontin INCREASED the burning sensations. It was only the benzodiazepenes that took the burning sensations down and opiates that helped to take the edge off what I call the mechnical type of pain. Anyway, the bottom line is just a hypersensitive CNS I guess. So, that makes my Neurologist, my Spinal PM and even my Urogynecologist all saying the same thing. So, I think she is right...that ongoing severe pain just caused some kind of central sensitization or "windup". It just never made sense to me to have small fiber PN come on all of a sudden and after surgery. The CPS makes much more sense due to the problems with the upper cervical spine levels.

im glad that you have found something that works for pain for you, that is the important part

--since my neural investigations included a major component of looking for causes of central pain syndrome, such as MS and seizure damage . . .

Central Pain Syndrome is possible as an adjunct to any of a number of conditions that cause pain--neural or otherwise. But perhaps it is good, for the sake of argument, to divide central pain into the kind that comes from central sensitization--that is, when long term-pain signals from damage in other parts of the body cause trophic changes in the neural network and a perpetuation of "painful" firing patterns, such as is assumed to be happening in reflex sympathetic dystrophy/complex regional pain syndrome--and that caused by direct traumatic damage to the spinothalamic sensory tracts. The latter, which is what the painonline.com people usually refer to (I'm a member of the CPS alliance) simply has a different starting point--the initial damage is in those spinothalamic tracts, due to stroke, MS, HIV infection, B12 deficiency, seizure damage, and a number of other possible causes. The symptoms, though, may be body-wide, and may be indistinguishable from those of widespread, diffuse peripheral neuropathies, or from those of RSD/CRPS or other central sensitization syndromes.

There are, supposedly, some clinical observations that can distinguish Central Pain from direct spinothalamic damage. The symptom of "temporal summation" is allegedly one; this occurs when initial slight stimulatin is not immediately parasthetic or painful, but becomes so over some seconds in an increasingly intense manner, and then fades slowly over seconds to minutes. Supposedly, peripherally damaged nerves are painful immediately to touch. But, I have spoken with people with no central pain signs, but evidence of peripheral neuropathy, who have this temporal summation symptom, and there are people who've experienced both types of sensations.

Moreover, I suspect Kathi's report of her drug responses may not be universal, either. While the mechanisms of Neurontin and Lyrica are not fully understood, it is surmised that they work by making the inhibitory neurotransmitter GABA more available to the central nervous system, stopping or at least slowing erroneous propogation of pain signals. So, since they have CNS actions, they might work on both peripheral and central syndromes--indeed, the anti-epileptics are prescribed for people with central pain such as from MS and for those with pain from peripheral damage.

What I do suspect is that anyone with long-term, chronic pain probably experiences some degree of the first type of central sensitization. In that case, nontraditonal therapies to re-train the neural firing patterns--visualization, meditation, targeted exercise--would seem to have a very good chance of succeeding. I speculate they would be somewhat less effective for the second kind of Central Pain (primary spinothalamic damage).