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.

Quinine is very bitter....very. It does not take much to flavor tonic water.

I believe one report I read was 20mg/6 oz. The typical RX dose for quinine for leg cramps is 260mg. So it would take about 86oz to get an Rx dose equivalent.

I do not believe quinine is of use. It is much better to pay attention to
calcium/magnesium and potassium.

But I'll tell you a surprise thing I did a few nights ago. My right great toe has been hurting alot, a sharp pain, and my foot in general burns alot. So I tried some hydrocortisone cream on it (I thought the skin was very dry under the toes)...and my HC has aloe in it...and guess what. Alot of the pain is gone.
I've only used it twice in a week! I am thinking some HC was absorbed?
I've had really burning feet all summer, more than usual. I will continue with this new development and let everyone know on a separate thread.

Thanks for the report. I think that is what they were trying to achieve when I was at the Cleveland Clinic day program for pain. I told them and how I feel that I think yoga,talking about your feelings about how the pain makes you feel not symptoms,biofeedback can assist but it comes to a point where it does not cut it. I wished that the clinic did that part cause I found the support and coping techniques nice but also after being on your feet and doing so much physical activity you also need assistance of meds. I said you guys get a head ache and take a med you don't write how you feel about it or stretch. So for me when I felt like I got shot in the legs from pain to write how I felt about it rather then getting relief was irritating. Now though I do work on certain ways of coping. Actually in therapy right now I'm working on mindfullness and relaxation skills. It does help me stay present. I think for myself the coping skills work better for the anxiety and depression around the pain but not so much for the actual pain itself if that makes sense. I need any help I can get though. Thanks Melody

I have taken Mrs D's advice and now take magnesium citrate in powder form every day for cramping and this has been a great help. I have suffered with severe foot, ankle, leg and hand cramps which my neuro feels is due to my PN. No one else has a better explanation for them. However when I get a very bad day of cramp and it looks as if it is going to keep me awake that night (probably walking around the bedroom on and off through the night) then I have with my doctor's approval, quinine bisulphate tablets on hand. I take just one 300mg tablet when the cramp is at its worst and it gives me about ten to twelve hours of considerable relief.

As for the quinine in tonic water - as Mrs D has indicated - forget it. You would need a crate full

Tony

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