respective choirs? Please? And get down to the key issues of how come pain as many of us truly KNOW it too well, isn't ever pleasurable? HUH?

Last nite and repeated tonite is an interesting set of 2 one hour shows on the discovery channel about first the Brain, and second the Nerves. While I missed parts of it last nite? [Dozing is a nice thing on occasion?] I plan on paying attention tonite. The snippets I saw particularly on the nerves were not something new [to me-acquired thru lots of reading] but the visuals and explanations are simpler and graphic to orient those around you about how nerves work correctly then not.

David while I appreciate your own approach to your OWN neuropathy, I do not think it could 'cure' my own disease, which is a somewhat rampant auto-immune disease/condition/syndrome. I DO appreciate how the mind can help the body heal in many ways, and I use some principles in my own pain management regimen...usually either distract, ignore or tough it out. But then, I have a few other 'issues/diseases/conditions/syndromes' going on as well. None can be clinically connected [I am NOT a hot-house rabbit or mouse!] nor would I expect them to be. There have been instances during my onset and progessions of pain that I truly wished for amputation -knowing full well that it would not STOP the pain per se. That said. We all have to deal with it in our own way. Helping others to FIND their own way -make their own decisions and choose the routes best for THEM is the ultimate service that WE as victims of these pains can do. To espouse one philosophy over another is a dis-service.

There IS a place for pain medications in folks suffering from PN! I know! I've used them! I have benefitted from them! I also can truly state as an idividual that some medications may work at times and no longer work at others. Face it! Our bodies have a way to 'accomodate' or become innured to such therapies after a time. Some folks here tho, can't even tolerate the most modest of pain-killers -even Tylenol. And, my heart goes out to them.
IN this complicated world, to imply/say that NO meds is a 'better way' to go is blanketly naive. I say this as one who MUST take one med daily another Weekly-With no OPTION, and will be back on another to ultimately save my life in the 'long-fun'.
UNTIL and when The medical community can describe PAIN and PAINS astutely, no blanket statements should be made. Nor can they objectively be truly capable of treating US as a group.
Let's keep it real here and simple and human. Nothing grandiose, please. We are all people [simple or not] just trying to get by. Hugs to all!'s - j

That's a cool idea, Steve! I wish there was some way they could trick the nerves into generating pleasant sensations rather than the pain they do generate!

Several issues to keep things on thread topic but first of all, my son's job was not to keep psychopaths 'in line'. Psychopaths occassionally slip thru the military's screening. I think more psychopaths are roaming schools and college campuses. Psychopaths may make better killers, however, they do not make good soldiers. At least not in the military service that I hope my country has. We have asked a lot of ordinary every day people to do what most of us, simply could not even attempt to do. My son, and his 'men' (regardless of gender) were of the utmost quality, and I would hope that most Americans would understand the integrity of the majority of these ordinary people, who perform extraordinary things every day.

Many of those young people returning without legs, have 'burning feet'.

My son is not the issue. He is supported, and supporting. However, tens of thousands of injured people many of them with neuropathic pain, who may be reading this forum, are the issue. People with injuries, such as amputated limbs, suffer from neuropathic pain.

I do not think it is ever a good idea to stereotype people. I don't think that harm was intended, but, I feel it could easily be interpretted that way by people far more involved in the military experience than I.

I think a good many of them have come back with psychic pain that many of us, can not comprehend, and physical pain and impairment that makes me shut up and gut it out for fear of embarrassing myself.

We of all people, should be aware of the stereotypical 'chronic pain patient' or 'drug seeker patient' labels.

People do not that easily fit into 'types'.

Some people have a higher threshold for pain and stress. Is it because they do not feel it or is it because they can bear more?

Not for me to judge.

One can not assume because one can 'control' one's pain that 'one's' pain is equal to anothers, or that 'one' has some secret, or some trait that makes one better at managing pain and if others only mastered this process, that they would be free of suffering.

I have seen people faint from a small cut, and yet others joke with me while I stared at the shards of broken bone and marrow almost poking up my nose as I was upside down in the front seat of their crushed car, trying to hold their arteries shut while the fireman cut them out of their car, cracking the windshields in preparation to use the jaws of life, releasing toxic silica sand thru the car. Praying the entire time for the patient not to code, because the steering wheel was wrapped too tight around their chest for me to ever attempt a rescusitation, or for the car not to blow up. Am I an adrenaline junkie or did some one just have to do the job because others did not or could not? I wasn't thinking about sex at the time, s and m was the last thing on my mind at that point. I wanted a drink of water, but it smelled like a meat market, no one could get me water and it was 140 degrees in there.

I know when I had a patient in pain and I held the morphine syringe, I gave it. I didn't ask them to breathe deeply and think happy thoughts.

We, do not hold the key to another person's pain relief and I pity those to whom we come, with our issues.

Not all suffering is pain. Being dizzy or nauseated isn't painful but, it is suffering. So is incomprehensible sadness and grief. If I can relieve it for a being I will.

Dalai Lama, and I don't think there is one work of his out there that I have
not read, states.

“Our prime purpose in this life is to help others. And if you can't help them, at least don't hurt them.”

We go to others for help and then complain. Not all medical professionals are compassionate, neither are all western pracitioners uncaring people ready to poison us with pain relievers.

They, like many of you, feel they have the answers to pain. Many of them are just as sincere, just as caring.

Pain is extremely complex, and I would not attempt to explain it. I am a medical professional with post grad training, usually one, who administers pain medication. You pretty much get a good idea of what pain looks like when you spend a lifetime trying to relieve it for people, with whatever you have at your disposal or whatever you wake a doctor up at 3am to beg for for your patient, while you get cursed at. Even the honored Dr. Weil, may get irritated night after night, when he is awakened by a medical professional asking for yet higher and higher doses of IV meds to stop the pain of a dying patient. You let the doctor vent and then make a suggestion, and he/she usually agrees. No apologies are given and are they seldom asked for. I do not think that sometimes people understand just how stressful the medical profession is. It is not what you see on TV. Lots of nurses, standing on feet for 12 hours have neuropathy, and they can not gork themselves out with drugs lest they kill you with brain fog. Doctors get sick too. I make a point of asking my doc, how his/her day is going and if they are getting burned out yet. I actually care for a number of reasons.

Dopamine is a pleasure neurotransmitter, it is also one that is involved with movement disorders. Some people do not have enough dopamine receptors and have Parkinsons or RLS, among other diseases. Some have too much dopamine and have Tourette's or motor tics, or psychosis.

Opiates are a neurotransmitter. Some people do not have enough opiate receptors and therefore, do not feel the 'rush' or the 'relief' that others get from the same dose of opiates. They feel nothing when it is given to them.

Substance P is involved in the transmission of pain. Serotonin is involved. Norephinephrine is involved. GABA is involved. There are likely neurotransmitters involved that we are not even aware of yet, that play a role in pain. There may be gender differences, ethnic differences based on drug metabolism.

What is used to put some people into a slumber causes horrible agitation for others.

It is extremely complex, and people far smarter than any of us, are working to develop ways, different ways, to control pain, because pain likely has a genetic fingerprint.

Pain is one component of neuropathy, and much can be learned from those who deal with any type of chronic pain problem.

Functional loss is another component of neuropathy, much can be learned from those who deal with the challenges of having lost a limb, or those who need to use adaptive devices. Cooking organic food from scratch with splints and adaptive devices is a marathon.

Autonomic, or automatic functional loss is yet another component of neuropathy. Nerves to many body systems deteriorate and die in neuropathy, so much so, that some people can not stand without drugs to raise their blood pressure. Try cleaning up after cooking that organic meal, if you can eat it without it backing up your dysfuncional denervated esophagus.

Many of this happens regardless of what steps the individual takes.

We are all glad that some members have found relief. As excited as one may be that they have found the magic recipe, it may not be the magic recipe for another. There may be only the acceptance of pain and degeneration as the inevitable course of THEIR particular disease, and this does not mean they have 'given up'....it means that this is their disease process and course, at this point in time.

I was very 'into' eastern and holistic philosophies when hardly any one knew who Andrew Weil was...or Depak Chopra. Of course, stress, or what we construe to be stress, will aggravate any disease.

There comes a time when the disease itself becomes the stress.

When you struggle with braces, and adaptive devices, and what you used to accomplish in 5 minutes takes you an hour, it gets stressful. Often times people can not do what they used to do, such as use their talents to earn a living, and then they have financial stress.

It is hard to 'reframe' things when your belongings have been hauled to the curb, or you are uninsured. Those folks really don't care about the chaos in the universe at that point. I am sure, in most cities, there are people who have been kicked to the curb, or need their medicine paid for, or need a bone marrow transplant, or blood transfusion or adoptive homes.

Nerves are working when we don't notice them.

How they work, medical science admits, they yet do not know.

I do know that nerves and nerve are two different things.

Thanks for the perspective, Cyclelops. If any one person had the one true answer for dealing with chronic pain, we would all be using it. I was pretty taken aback by David's post. I don't think that because I use fentanyl and lyrica that I am "giving in to cynicism or despair"...???? He also stated that opiod use invariably leads to increased dosage use. However, some of the newest research shows that addiction, dependancy, and tolerance do not necessarily occur with all people who use opiods for chronic pain. I have used the same (lowest) dosage of the fentanyl patch for 8 years without any loss of pain relief or need or desire to increase the dosage at all. I would hate for anyone who is really sufferring and cannot get relief through non-drug methods to be scared off of trying drugs in order to have a happy or productive life. I hope that everyone will keep an open mind about everything that might help them, as I try to do. I hope I don't ever hurt anyone's feelings. Sometimes that happens when we communicate in writing rather than face to face, even with good intentions.

I have gone off and on opiates without any difficulty over the years.

Each individual has to use what they feel is effective for them at the time and manage the side effects. There are risks with many of the drugs on the market, but, there is also risk in immobility. If pain meds allow for greater activity, and more normal life style, that is appropriate use.

Different members have success with managing their specific PN symptoms with their specific modalities, and likely get frustrated when their approach does not work for others. It is tempting to think that perhaps, if it were just done properly, it would work. It may as frustrating as you know when you have done what you could, and it did not relieve your pain or suffering, not for lack of trying.

PN is so diverse, that to even address it in one forum is difficult.

Autonomic Neuropathy is incomprehensible to some one who has no experience with it. Sensory neuropathy is foreign to those with motor neuropathy. Hereditary Neuropathies can have some peculiar symptoms that are so rare, that no one can relate. Functional impairment brings different issues than pain.

Peace comes in knowing you are doing what you need to do, to live your life to the fullest.

Eventually there will be breakthroughs.

I still stick with my premise, the cause of the PN is important, as it may be treatable. If it is not, as is apparently the problem in my case, there has to be the acceptance on my part, that life will require more effort and be less comfortable than I would have wished for myself.

I will certainly do what I can to make it full, fun, exhilarating as possible, whatever that takes, and on bad days, as Sue said, I have 3 comforters and a yellow dog, has to be the yellow dog, the other two won't work. Don't get me wrong, I love them, but one is 90 pounds and cuts off my circulation and the other is 75 pounds but bony. It has to be just the right recipe, and it won't work for every one...oh, and I down a few pain pills, and antispasmodics too.

Not every one who uses opiates becomes addicted and drug seeking. Most people prefer not to be on opiates if at all possible and fight it to the end, but there comes a time, when to lead a normal life, or half normal life, medications must be used. When they are used, people need to understand the implications and make informed decisions.

I also was also taken a bit back by some of David's remarks,as well as Mrsd
bet that's what we are here for..If we all agreed it would be a boring fourm
(Mama Sue)

I have seen thing's in Truma, including Med student''s,nurses,ect. faint
and fall on a patient..But they shaped up,they better,believe me,if they
don't new job..I have seen a 4th year resident go blank,and have seen a
nurse tell him what to do..Yes brain's work differently, a man was brought
in working under a truck, just jam's something dumb under it,and fills no
pain,honest no pain,he saids but I'm looking at a man with no leg and
so help me,I feel pain..Oh please put him out,it hurts and for awhile he will
have pain but not now..It was my brain hurting,sometimes it got so bad
I had to walk out.for the patient..Rare but It did happen.

Susan you take what keeps you where you need to be,not one thing wrong
with that. And i'll stop because you handled yourself just fine and we are
all different David..We handle it in many different ways,I was vrey much
like you and it worked very well,meditation still does. As my wheelchair,
you can only fall so many times,then more pain from broken bones.
and after 3 yrs. I agree to take morphine,don't know why it took so
long,Oh i'm not fying high,belive they won't let you, and life is interesting
even if you do it more slowly.

This was interesting but Cyclop went swiming for 20 min. today,I think that's
amazing her brain tell's her swim, that's her brian saying slow down
20 mins enough because here comes the pain. Pain even though it hurt's
let's you know your alive,and must fight to stay that way,pain is slow,
then it overwhelmed us. My son fell 50 ft off a rock no injury a man from
Canada but landed on his head ,he didn't survive,makes you wonder,oh well.

May you all have the good times,get under 3 down blankets and the right
yellow dog..I'm got the flu where's that dog..Hugs Sue

Yes - that's kind of what I was thinking at the outset of this thread. Sorry I have been away from the 'net the last few days, and unable to comment.

Best Wishes,
Steve

This is an interesting perspective. At first glance it looks like it is contradicting the definition of PN (...at least they way that neuros define it, where there is a clear demarcation between central and peripheral nervous-systems in the spine.). But I can see how the "holistic" approach to PN puts that comment in context.

Steve

If we all agreed and persued the same treatment or outlook on how to deal with our PN and our life it would be not only boring but pointless to be here.
There have been times when some things that have been asserted here or the way they were presented have struck a nerve in me or rubbed me the wrong way. I understand that when you are in pain it can feel aggravating for people who you perceive cannot be in as much pain as you are to assert that if you only would lose weight, or exercize more, or get more sun or think positively that we would feel much better and maybe even reverse the damage that has occured. Most of us were living pretty full active lives before being blessed with PN and its sometimes upsetting especially when you are in pain to read that we may have brought this on ourself or arent doing enough to combat it. I have felt like this, we are only human we will sometimes resent what is being said.

That being said I dont see anything wrong with what David has to say. He is not saying that there is only one way to approach PN and pain, or that you should never take pain medication. Actually he has said that it is necessary at times and in some cases to take pain medication to be able to live your life and function. He also presents an alternative or supplement to what is offered by most doctors for the treatment of PN. That is what i am here for. I have learned a lot from reading the various theories, experiences and treatments that people have had and what they have learned in dealing with their PN. I am interested in what they feel has worked for them and what
hasnt. If conventional medicine had all the answers we wouldnt be here.

I think that it would be a shame if people were hesitant to post with the information or outlook that they have because they might not agree with the conventional wisdom or what other members of the group feel. We dont want to get into a group think mindset here. Because someone doesnt agree with us or doesnt have the same approach as we do doesnt make it a personal attack or insult. I dont want to see people lose interest or feel its more trouble than its worth to post.We all lose then.

There is a difference between addiction and drug tolerance, where increasing doses are required to get the same pain relieving effect. I've read from many sources that people who use opiate drugs for pain relief develop tolerance to the drugs, but rarely become addicted. Tolerance is not an issue with terminal patients or for short term pain relief, but our PN pain goes on for many years.

If you don't want to try anything BUT drugs to get pain relief, that's your privilege and choice, but I'd be remiss not pointing out that there are always alternative and complementary approaches. You and I are never restricted to doing just one thing unless we choose to. To me the issue is health, of which PN pain is but one facet. For example, Andrew Weil has written extensively on reducing inflammation and calming down autoimmune reactions. You don't have to accept that point of view or change your life in any way, but I have a right and responsibility to state it here in as much detail as I think is appropriate. If you take offense at that where none is intended, so be it.

I think several of you are projecting a lot of your feelings on me, putting words and meaning in my posts that wasn't intended, or wasn't there at all. Rather than refute what you've written I'll merely state that you all have my deep sympathy and compassion. If I've offended, it wasn't intended. I've tried to shed light on the subjects and bring up points so that we all find clarity in a discussion, not put anybody down in any way. If you feel put down, please forgive my poor choice of words.

P.S. I was composing this while HeyJoe submitted the above posting.