Gee, David, that sounds like negative thinking and a little cynicism to me regarding conventional medicine. I would say that I have had 6 crummy doctors to 1 good one, but the good ones are good. I go to a Famly Practice doctor who is very interested in my idiopathic PN, reads all the latest research, listens to all my ideas for treatment, and reads the articles I bring him. I am an active participant in my care, and the medications I take have literally saved my life. There are some drugs that have side effects or cause problems, but the same is true of supplements, some of which are drugs themselves, just unregulated. Unfortunately ther have been two research studies lately implicating the taking of supplemental vitamins and folic acid lately, for example, in causing serious health problems (the folic acid increased colon cancer, I believe, can't remember the other study right now...). I think we all just have to be responsible and read and try to find docs that will work with us, and be careful in the drugs and supplements we take. I am glad you have found a way of dealing with your pain that works for you, but I feel we all have to find our own way with pain.

I agree that the hypersensitivity can be anywhere from the spine on up. But, it's one nervous-muscular system. Whatever quiets one area should calm down everything.

Drugs scare me a lot. Everybody here has horror stories to tell about unexpected serious drug reactions in themselves, family, or friends. My mom at one time took a handful of different drugs every day, and we thought she was senile for years! My dad was hospitalized twice the past year because of drug side effects, one almost fatal.

I find the whole drug enterprise unscientific and illogical. Drug testing is short term but prescriptions for chronic conditions are long term. Drug testing can't begin to cover all the variables of our makeup, diet, and other drugs we take. Horrible, sometimes fatal or permanently damaging side effects are too often ignored or thrown out by the companies testing their own drugs, as with Vioxx and Phen-Fen. That's another whole discussion, that the companies which stand to make so much money from FDA approval are allowed to do the testing leading to FDA approval.

Clinical experience is better, but it's hard to connect the dots between drugs or drug combinations and symptoms. Too often, doctors prescribe another drug to reduce drug caused symptoms and connection isn't made or reported, especially if the bad side effect is rare.

Thanks for the response. You have helped me a lot with your thoughts and observations. I think that whatever provides relief AND improves function AND general health and well-being is the way to go. Long term opiate or steroid use might give relief but wouldn't pass the rest of the test. In contrast, eating a healthy diet and appropriate exercise would, even though the relief is subtle and builds slowly over a long period of time.

What I'm thinking now is that electro-stimulation (with the ReBuilder) provides marked pain relief and reduced numbness for me. There is evidence from animal research that one way that pulsed electrical stimulation helps is by reprogramming the nervous system, from the nerve receptor damage site to the cortex. Before asking for Neurontin, I'd be safer using the ReBuilder twice a day instead of my current once a week, to see if that leads to permanent improvement.

than a lot of thought into this all...BUT...there are times, when the benefit/pain ratio rationale has to come into the picture! I KNOW you have been more than a searcher, no, an advocate in the search for alternatives...but like others here, it could be something as simple as putting your wallet in a different pocket? In my case, it is not that simple....I do have one heaping, raging, autoimmune reaction going on thruout my systems. It is causing havoc on who knows what else? Please, get this aspect double and triple checked...I cannot tell you what waking up each day with 'something new' means to me...nor would I ever wish it on my worst enemies [not that I have any] but you do know what I mean.
It's the danged all fear we all have to deal with!
I am sure BobB has a word or two to say about this all...I hope he does. He's shown strength that makes me feel like a wimp! Rightfully so.

Getting down to business, check out some sort of pain management clinics in your area, some might just have the or a philosophy that meshes with yours and can scribe meds judiciously to meet your needs and dispel your fears...Both the needs and the fears are REAL... they are not imangined.
It is a need, and a need to understand to control what aspects that we can control about how we are treated that is more important..

That all said, try it...who knows? It might work? Nothing ventured/gained and all that. and then some - j

As long as we can function....AND speak in complete sentences that make sense...I figger we are doing pretty GOOD...Not to mention walk a hundred feet without going seriously TILT!?

That life is good is a matter of perception...I know of others with other conditions that make us all seem small by comparison. I hope we all learn from them and rise to that standard. David, you have been a standard for me to rise to in ever so many ways. That you hurt now, and admit it, well, means it must hurt a lot! That you are so honest about it means a lot! To all of us. I just wish we all could spread it out and make it less! - j

PS I would KILL for a TENS Accupoint and the 'instruction' that would go with it! That thingie woke up my nerves [what I have left] and I'm not sure I want more or want them to go dormant....Hummmm. Verry interesting sets of new nerve zeeps...or activations or awakenings or whatever...stuff happened?

with everything you wrote.

Regarding supplements, they CAN cause problems. If a little is good, a lot might be bad. There is plenty of information available, including in this forum, on safe and effective amounts.

We should all be aware that hospital error, doctor error, and drug side effects together are one of America's leading cause of death and disability. I have nothing but sympathy for our overworked physicians and nurses in our fragmented and barely functional medical system. I have a lot less sympathy for our greedy and irresponsible drug and medical insurance industries. Needless to say, it is critical for each of us to be knowledgeable and to take responsibility for our own health (as you have done) in order not to be harmed more than hurt in the current managed care/HMO/PPO medical environment.

We all need to not be alone with our pain and fear. This forum plays a critical roll as a chat room to keep us connected. But more than that, this forum is an invaluable resource if used as an empowering learning tool, better than most physicians have available through traditional channels.

Part of the problem in defining pain is that we all feel pain differently. A type or level of pain that might drive me crazy may be barely felt by you. In nursing school they couldn't pound it in hard enough: Never ever judge a person's pain. If they say they're in pain, they are. As to how bad that pain is, falls under what I stated above; we all feel pain differently. The rating scale still in use, 1-10 usually, is actually very effective for rating pain. Chronic pain, too, can range from 1-10, varying on different days. What seems to befuddle doctors is when we have a pain that they can't point to a specific injury as a cause. For someone like me where they haven't found an underlying illness I'm sure they wonder how much of it is just in my head. I'd like to, for just one of my worse nights, let them experience the pain and discomfort I deal with. *Then* they would 'get' it. I hate it when the doctor acts like I'm simply imagining the pain. "Oh, you can't be feeling that. There's no physical reason for you to be feeling pain." Yeah, right. Tell it to my feet.

I had three doctors in 1993-5 tell me there was nothing wrong with my feet. The skin color was good and I had a good pulse in both feet. One offered tranquilizers and a referral to a psychiatrist. None did a neurological screening.

I finally got a referral to a neurologist who gave it a name but no treatment and no hope. Naming it meant a lot to me and my wife. The pain was incredible and debilitating back then...from running and backpacking to hobbling in a month with all the fear and unknowns. At its worst, I had no ankle reflex in my right foot and only 25% in my left, really bad balance, and little proprioceptive feedback from my leg muscles. Five years of yoga really helped the reflexes, balance, and muscle sense.

Now we know that chronic pain IS in your head, but not like those arrogant and incompetent docs meant it back then. The issue is, what to do about it. I'm doing much better now with the program at http://neurotalk.psychcentral.com/sh...p?t=177&page=2 (items #18, 19, 20) but am still in pain, even though I walk or hike daily without a limp.

I'm lucky and know it. Reading postings like dahlek's breaks my heart.
With generalized autoimmune syndrome, steroids and drugs like methaltrexate (sp?) can only help to a degree before the side effects become life threatening. Good diet, fish oil and other supplements, and exercise through the pain might help and wouldn't hurt. I hope dahlek reads the linked program and gets some ideas that help.

Y'all have a great day with renewed hope and energy. We all care about each other here. If wished were cures, we'd all be feeling fine and be older, wiser, and happier for the PN experience.

If wished were cures, we'd all be feeling fine and be older, wiser, and happier for the PN experience.
**********

There's a mouthful! Before experiencing PN for myself I'd heard of it and heard of what the symptoms consisted of. But I never could quite wrap my head around just what it actually felt like. Nor what an affect it could have on one's life. I would gladly give back this life experience.

[quote=jarrett622;109520] The rating scale still in use, 1-10 usually, is actually very effective for rating pain. Chronic pain, too, can range from 1-10, varying on different days.

Hi jarrett622

On reading your posting above I was just on the point of agreeing with your sentiments entirely when I realised you have (to my mind) contradicted yourself with the above quoted extract.
Whilst no one should ever judge a persons pain – and boy just like you have I had to put up with a lot of that – at the same time no pain should ever be gauged by using a so called pain scale. Your idea of 1-10 is almost certainly not mine because you may faint on my 9 or I may faint on your 7. Some folk here in the past have quoted the Mankoski pain scale http://shsskip.swan.ac.uk/Informatio...in%20Scale.htm which perhaps we could all embrace but I am not too happy with that idea. Many people will still exaggerate their pain while others will try to play theirs down.

I have tried until I am blue in the face to get both my GP and current neurologist (not to mention relatives!) to accept the level of pain in my feet but none want to understand and on one recent occasion my neuro told me to remember there were others worse than me. Now that really made me feel good.

Tony

Its good to see you posting here Tony. I hope you're doing well.

Regarding your quote above, in the book "Spontaneous Healing" ( http://www.amazon.com/Spontaneous-He...1151587&sr=1-1 ), Dr. Andrew Weil wrote something that was helpful to me and may help you. To paraphrase him, "Never accept negative statements from a physician or other health care provider." I'd include invalidating your experience as a negative statement from a physician. I write off negative doctors as ignorant and arrogant incompetents. Negativity and denial that anything was wrong with me and that my extreme pain was imaginary or neurotic was the primary reason I switched doctors so much the first few years of having PN.

Most American doctors are now aware of the existence of Peripheral Neuropathy because most have been sales-pitched to by Neurontin sales representatives. That's not a reassuring level of knowledge, but at least they usually don't totally dismiss the possibility that there can be pain in an area without apparent injury.

The "Newsweek" pain article that started this thread may be printed for the edification of arrogant and ignorant physicians. Though it is written for lay people, I learned new things about the nature of chronic pain from it as have other members of this forum. Maybe if you highlight relevant passages pertaining to chronic pain, or write the passages in large block letters on poster board, the physician gods you're dealing with will deign to spare a glance or two and actually learn something new from other than their accustomed, though limited, sources.

Take care.