[Wing42]

That's the title of an excellent article, by Loolwa Khazzoom, in the December "AARP Magazine". The link is
http://www.aarpmagazine.org/health/d...onic_pain.html

Dr. John doesn't allow extensive quotes of copyrighted material, so I'll do my best to summarize.

There is growing evidence that "alternative" therapies reduce or stop chronic pain (I can personally attest to that!).

Current brain researchers have found that while acute pain appears in brain areas connected to tissue damage, chronic pain is connected to areas of the brain used for memories, especially emotional memories. Often, the chronic pain continues long past the time when the original tissue damage has healed.The brain pathways that support the chronic pain patterns can become self sustaining, and can last a lifetime. Drugs do not stop these chronic pain patterns (DC-that's me, Wings42). Alternative techniques, in contrast, can build new nerve pathways and reduce or eliminate the chronic pain patterns.

There are more than a dozen alternative therapies that have been scientifically demonstrated to ease or eliminate chronic pain where drugs have not succeeded.

Drugs have a place in pain treatment, allowing people to function and live their lives while healing therapies are applied.

Few doctors have specialized pain management training, so if you suffer from chronic pain (don't we all in this forum?), we have to become our own experts, captains of our own ship of health. That's a daunting task, and we need the help of friends, family, and support groups like this forum to devise and put into practice a personal healing program even while we suffer.

Make sure your healers are willing to work together and work with you. Start with the most noninvasive approach, and then go on to more invasive approaches if needed. If a therapy doesn’t give you relief within a few weeks, try something else (I saw an acupuncturist and Chinese herbalist for a full year with no relief, an expensive mistake, before trying yoga…DC).

Realize that while in severe pain, you are desperate and vulnerable, so make a special effort to think critically. If they promise a cure or if things just don’t feel right, feel free to quit, and then spend your time researching the next alternatives to try.

Alternative Treatments That Work on Pain
Research shows these therapies can ease discomfort. For more information visit the website of the National Center for Complementary and Alternative Medicine.

Movement-Based Therapies:
• Physical therapy
• Yoga:
• Pilates
• Tai chi
• Feldenkrais

Nutritional and Herbal Remedies:
• Anti-inflammatory diet (low glycemic index, low fat, high antioxident diet-DC)
• Omega-3 fatty acids
• Ginger
• Turmeric
• MSM
• (Selected vitamins, minerals, amino acids, herbs, and other supplements that have demonstrated nerve healing properties-DC)

Mind-Body Medicine:
• Meditation
• Guided imagery
• Biofeedback
• Relaxation

Energy Healing:
• Acupuncture
• Acupressure
• Chigong
• Reiki

Physical Manipulation:
• Massage
• Chiropractic
• Osteopathy

Lifestyle Changes:
• Sleep hygiene
• Positive work environment
• Healthy relationships
• Exercise

Some warnings and cautions are in order. First, this is my summary of a much longer and better written article. Please don't do anything based on my summary without reading the article it came from. I tried to be accurate, but in my picking and choosing what to summarize and what to exclude, I may have omitted something that you need to know. Second, I am not a doctor. You need to talk with your physician regarding the safety of whatever you want to try. If your doctor isn't good to talk with, he or she can't be effective for your chronic pain problems. In that case, you need a different doctor. Third, what worked for me, yoga, supplements, anti-inflammation diet, exercise, meditation, and Eastern philosophy may not do much for you or could even be harmful. Lastly, there are no single magic bullets for chronic pain or the conditions that caused the pain to start in the first place. To change our life requires a committed multi faceted life-changing approach.

As somebody on this form once said, and I paraphrase, "Learning to deal with this has been a wonderful adventure, not one I would have chosen, but wonderful all the same." That's been my experience also, as I slowly learned to deal with the awful pain, hopelessness, guilt, and fear bordering on panic the first few years of having PN. There is hope, you can deal with this, and you can substitute fear with action and healing.

Good luck and Godspeed.

[dahlek]

To augment or confuse the issues is the following AARP article I'd posted ages ago here and elsewhere:
http://www.aarpmagazine.org/health/prisoners_pain.html
Someone said: This has been a wonderful experience? Was that me from donkey's years ago or another fortunate person? Please tell me WHO said that? I, for one, would hate to be quoted out of context.
It was sports training in both the Alexander and Feldenkrais techniques that made ME aware that my own PN was NOT normal by any means. And it turned out to be an immune-related neuropathy [possibly paraneoplastic] for which there is only treatment of the symptoms- NO Cures.
I am all for trying ANYTHING. IF it works and does no harm? Fine! And, I have tried more options than you will ever know here! But, for some, vitamins and mineral supplementation can and does help keep the rest of the body from becoming worse. However, the main issue of pain, and then constant MORE pain persists. ALWAYS.
Key to this all is finding a neurologist who CAN and DOES listen to what your issues are, and doesn't brush it off as 'all in your head'! It can be done, I got lucky myself on my second and third trys and got the testing I needed [no, required] to diagnose my PROGRESSIVE PN issues.
Should a person have progressing neuropathy pains and issues, well, then call in the BIG DOGS! To delay in agressive testing and diagnostics is to assure permanent damages of both large and small fibers in the nervous system. Thus that analogy of being poured with gasoline and set on fire. I liken my status as to being dipped into the french fry oil.
Yes, one can substitute guilt with action! Terror only comes when the stuff progresses at a rate of inches an hour tho! I've been there. I have permanent damages, but, I've also some healing. Patience is the key. Thousands of nerves can die during a PN onset. It takes months and years for this all to heal. I wish it were more simple to put. The research on PN caused nerve death and healing is slim, at best.
For me, immuno-augmentation, via IVIG has been my salvation. It is not for all. The testing is extensive, expensive and the treatments more so. But, were it not for that therapy? I could not walk or be other than bed-bound. Honestly? I truly do wish that B-12 could be my only cure! Or ALA or ALC or whatevers.... I do take them, I need all the help I can get. But for some? 20-30%? here? It is NOT the end all or cure all needed. Please be respectful and helpful to those folks as well.
Hugs and hope always - j

[Wing42]

if the shoe doesn't fit, you certainly don't have to wear it. I realize that you've been in an extremely stressful and painful situation for a long time, and what I posted (an article report, not my creation) may not be at all appropriate for you.

You may not have enough energy or will left to do anything much at all. I don't know, but I've certainly known people in that situation. I was pretty much like that three years ago with pneumonia, feeling my life slowly ebb away and not having the energy or vitality to do anything but peacefully die. Somehow, I got better, but not because of anything I had consciously done.

My PN is probably also autoimmune. My ANA titer was 1600 in three tests over several years, so something autoimmune is going on in me. My current prostate problems are not bacterial, and might also very possibly be autoimmune.

While my PN is nowhere near cured, it is mostly in remission. Why? I think I stumbled on doing some right things at the critical right time. I had read "Spontaneous Healing" by Dr. Andrew Weil. Part of his findings were that people who healed from incurable disease were willing to try different things, got help, and never gave up. I would include your advice to find a good neurologist (a rare bird indeed), as getting help and trying different things. You've been in this forum for a lot of years, so I know you haven't given up searching for answers and at least considering different things.

So, peace brother. There's nothing in your reply I'd disagree with, though I'd probably emphasize different things than you. In five desperate years of trying, I saw three grossly incompetent neurologists who were actually harmful, and one minimally competent neurologist who at least did basic diagnostic testing and was open to the theoretical possibility of some improvement over the years, even though he had no suggestions. To my surprise, he even listened to me and was willing to discuss things.

You don't know the pain I was in, the panic I felt when my PN started...as itching progressed to incredible debilitating (can't sleep, can't walk, can't sit, can't think) pain in a period of about 6 weeks, and having doctor after doctor back in '93 tell me nothing was wrong with my beautiful pink, warm feet. Two suggested psychiatric consultation. None did the most basic neurological screening (I would have easily flunked) or was willing to refer me to a neurologist for the first two years of this. Then, after a 10 minute exam, the first neuro I saw told me I had PN, there was no cure and no treatment except Valium, and that it would rapidly progress until I was totally incapacitated. So, you don't know the hell I went through. You write as if my PN is somehow less than yours, but buddy, as I don't know what your situation is or was, you don't know mine.

[dahlek]

YOu state that you've had PN from '93 then also indicate that in the last five years your PN has gotten worse? I was never aware of an excaberation of your own PN events. Needless to say, I do wonder about YOUR test results and what actual records YOU have on them to help you understand whether you do have immune or auto-immune issue[s]-and of what kind.
As for not understanding the Pains? I have posted here and elsewhere that I had seriously considered amputation at times, but for possible residual nerve-memory issues! My neuropathy was progressing up to my torso and thru it at the rate of at least one INCH a month! Knowing that I'd already some autonomic dysfunction vis-a-vis the lymphatic systems due to PN, I was in a ripe state of high alert myself. I just sat myself down and said...HEY! It could be worse, ya could have Cancer! And then, guess what? Dah Dah! And then, more stuffs! Now if a doc tells me you have X? I go why not?
We should not be in any match here to say who's got it worse... not at all. But, to espouse one approach as the end all and be all without other considerations is not always the route others have to take. Nor, should they necessarily. We are all here to HELP and INFORM others about their options, and to empathize with their pains, as we've got them too. While I might state my opinions, I do try to make them distinct from information presented. I present articles or information sites in-situ without editing to avoid any biases I might have one way or the other [aside from that it mite be interesting]. I know you have read many of them and have cited them in part in other places. To get things out of context at times tho, is like listening to the 'minute' news. Lots can be lost to those interested without the effort of actually LOOKING it UP! Each 'beneficiary' of PN should have to LEARN and Actually LOOK up stuff for themselves! We can and do provide starting points? But the actual learning has to be THEIR OWN.
Weill and others serve their function in terms of helping encourage US to learn, but WE have to do our own job of learning to get wherever it is we need to be.... [I think that's from Douglass Adams' Dirk Gently-the Psychic Detective-or a deriviative of same]. Hugs and hope always - j
At times, I realize and appreciate that I am not an 'animal'! Given my state, I'd likely have been put-down a while ago! Go figger.

[cyclelops]

I have done a lot of my own diagnostic research, until now, when things are so undeniable that docs are able to come to conclusions I came to years ago.

My recent physicians have for the most part done the tests I have asked for.

I have been able to get pain control, probably because things are so evident now.

I think, the people that NEED pain control are the ones who loathe to ask for it, and by the time they do, they have suffered a long time.

Most have tried everything that they can before they approach their doctor for pain meds. It is humiliating.

They are also like me, the ones who try to take down doses or do things like quit it for fear of addiction. My poor physician doesn't know what to do with me....up and down and up and down. I want off....but no way that will happen. I am too sick. My own doc tells me I need pain control and I need to get used to it.

My PN is not my primary problem anymore. I have autoimmune connective tissue disease, and the nerves are only one target. It has nailed my eyes, salivary glands, skin, nails, heart, GI, nerves, ligaments, and bone. From not knowing which one it was, I now fit in more diseases than I care to.

I was almost content to accept that I had a hereditary neuropathy that could not be treated....now, I am on IVIG, hoping it keeps me hanging in!

It is important to follow your instincts, fight for what you need, and do what you feel is best for yourself.

[Wing42]

Originally Posted by dahlek

YOu state that you've had PN from '93 then also indicate that in the last five years your PN has gotten worse? I was never aware of an excaberation of your own PN events. Needless to say, I do wonder about YOUR test results and what actual records YOU have on them to help you understand whether you do have immune or auto-immune issue[s]-and of what kind...

I'm sorry if I wasn't clear. The acute and rapidly worsening stage of my PN lasted several months starting in 1993, and then became chronic to this date (but I'm usually pretty pain-free the past few years). It took me about five years (about 1997 or 1998) to finally find a semi-competent neurologist (outside of my HMO) who actually did appropriate testing. Even at that, he didn't suggest a treatment plan, so it cost me thousands of dollars to find out what didn't cause my PN.

But, to espouse one approach as the end all and be all without other considerations is not always the route others have to take. Nor, should they necessarily.

The article, and I, recommend looking at many approaches. In your reproach of me, you seem to be the one recommending one approach, neurologist prescribed treatment.

We are all here to HELP and INFORM others about their options, and to empathize with their pains, as we've got them too. While I might state my opinions, I do try to make them distinct from information presented. I present articles or information sites in-situ without editing to avoid any biases I might have one way or the other [aside from that it mite be interesting]. I know you have read many of them and have cited them in part in other places. To get things out of context at times tho, is like listening to the 'minute' news. Lots can be lost to those interested without the effort of actually LOOKING it UP! Each 'beneficiary' of PN should have to LEARN and Actually LOOK up stuff for themselves! We can and do provide starting points? But the actual learning has to be THEIR OWN.

To quote what I actually posted to start this thread, "Drugs have a place in pain treatment, allowing people to function and live their lives while healing therapies are applied." and

"Some warnings and cautions are in order. First, this is my summary of a much longer and better written article. Please don't do anything based on my summary without reading the article it came from. I tried to be accurate, but in my picking and choosing what to summarize and what to exclude, I may have omitted something that you need to know."

Weill and others serve their function in terms of helping encourage US to learn, but WE have to do our own job of learning to get wherever it is we need to be.... [I think that's from Douglass Adams' Dirk Gently-the Psychic Detective-or a deriviative of same]. Hugs and hope always - j
At times, I realize and appreciate that I am not an 'animal'! Given my state, I'd likely have been put-down a while ago! Go figger.

And finally, "we have to become our own experts, captains of our own ship of health." That last bit is from the article, not me, but I agree with it.

So, we broadly agree on every point. The tone of your first reply is that what I posted is diametrically opposite to your point of view, but that's not the case at all. I'm only trying to help empower people and give hope and some direction to the newbies here, to let them know things are not hopeless and they are not helpless.

I'm upset that your reply twisted, distorted, misrepresented, or made up what I wrote. It has only served to very much muddy and confuse the message of the original posting. I'm sorry you didn't just reply to me in a personal message instead.

Now I remember why I drifted away from this forum. Somebody too often seemed to twist what was clearly stated, essentially "In dealing with your PN, look at the many paths to healing and to your total health" into their own tirade based on their biases, usually a strident defense of drug use.

What started out as an attempt to give back to this community turned into a total bummer. There are better uses of my time than spending hours preparing a posting reporting on an article I thought might help many people, and then spending many more hours having to untwist angry distortions, confusions, and misrepresentations having little to do with what I actually wrote. I'd rather spend an afternoon at the dentist. At least that would help fix me and would help the dentist get wealthy so we both benefit. This was quite the opposite of beneficial to me.

[glenntaj]

--or, at least one of the people--who wrote that the neuropathy journey was not one I would have initially chosen to go on, but that it had proven to be an experience that, on balance, I would not have traded for others, in that it had provided me with knowledge and advantages I would not have otherwise uncovered. (I think I first wrote this on the old Braintalk boards, pre-crash.)

Much of the knowledge and many of the advantages have come right from boards such as this one, which have not only provided me with a place to vent, but with the friendship of people I otherwise would never have known existed, to say nothing of the support said people have provided. I also gleaned a tremendous amount or knowledge of neural issues in particular and health issues in general, such that now I feel quite comfortable going toe-to-toe with most doctors on most issues--something that six years ago would never even have been considered. Of course, my trip thorugh the medical system, with its insurance idiocies, incompetent/uncaring professionals (not all, but far too many), and non-patient priorities provided quite an education in itself, and radically changed my viewpoints on health care in the US (and by extension, my viewpoints on a number of other issues). So, on balance, although I wouldn't wish painful neural symptoms on anyone (OK, maybe some of the stupid "all in your head" docs I encountered, but jut for a few minutes to promote empathy), the experience of coming through it, in retrospect, has, overall, provided its own education and social context, and those I value greatly. That's not quite the same as celebrating the disease, as Barbara Ehrenreich has pointed out has happened to some women who found having breast cancer empowering ("getting breast cancer was the best thing that ever happened to me"); I wouldn't go that far. But I understand how fighting a disease that is met with skepticism and finding new resources you didn't know you had can be gratifying, and life-altering.

In essence, then, I think you two just are coming at this from opposite sides of the same coin. All of use have had, to greater or lesser degree, the experience of having to seize empowerment, by gaining knowledge and demanding tests, by bringing up treatment possibilites to docs who should know about them and demanding they make the effort to implement them. For some, this may be along the avenue of supplements and lifestyle changes, for some it may be insistence on skin (rather than sural) biopsies, for others it may be demanding effective narcotic pain treatment when necessary, or immune-modulating therapies in the face of equivocal evidence they might be helpful, or just insisting that some--SOME!--appropriate testing is done, and standing up to those who would dimiss or minimize our symptoms.

These boards provide support and differing points of view on all this, of course, and rarely are the points of view ill-reasoned. Most of us who have progressed from mostly taking advice to mostly giving advice take great care to document our viewpoints with appropriate references and evidence (in fact, far more than most practicing physicians do day-to-day--one of the major weaknesses, I feel, in how medicine is "done" in 21st century America), but since allopathic medicine and alternative medicine are both inexact sciences, and in fact have much to do with art, in practice, we can certainly have well-reasoned disagreements.

I know that these boards--and this one in particular--are fulfilling functions that in a much better world, they would not have to: support, knowledge, advocacy. Old school medical professionals who disdain such "internet" vehicles are in reality fearful, and they have every right to be--the proliferation of knowledge, and of shared experience, are very threatening to those whose living, and societal power, depend on an esoteric, incomprehensible realm of expertise; if patients can know as much as doctors, how can doctors keep charging as "we know best" professionals? This is why I feel, of course, that the whole medical model is undergoing gradual but inexorable change. Those docs who embrace more of a partnership role than a Moses-with-the-tablets role are likely to have greater success going forward--and slowly, more of these doctors are appearing, though it will probably still take much more of a structural change in the supports of the profession to turn this into a floodtide.

In the meantime, we can all do our parts here in helping to make that an eventuality--questioning, explaining, empathizing, criticizing, and having the occassional pity party--none are automatically out of place.

[mrsD]

There is no one magic bullet to help all people with PN.

The one treatment that may help autoimmune PN is not even a drug, as we know it. It is a collection of globulins from other people, donors, injected into the patient. Sort of a "natural" treatment. IVIG

The most common cause of PN is diabetes statistically. This CAN be helped by lifestyle changes.

Other causes are toxins/poisons/and drugs. These may be temporary, and when withdrawn healing may occur.

Then there are the hereditary/genetic errors type. So far we have only one possible therapy for one specific hereditary type CMT still being researched...Vitamin C. No one at this time knows of ways to correct hereditary types of PN. Perhaps it will be stem cells in the future, or some other nutrient to fix the decay of mitochondria/respiration of the cells that are affected. Some enzyme perhaps.

So the bottom line? Doctors are way behind with PN as far as treatment. You may be offered plasmapharesis, if your doctor thinks you have Guillain-Barre viral infection. But it is not offered to any others with other triggers for PN.

But all the other drugs -- gabapentin, opiates, other pain relievers, Lyrica, etc are palliative. (for symptom relief only).
The way I look at it...is that when doctors have sophisticated and expensive I might add, drugs like these they don't look further to help the patient. Today you have to practically hit doctors over the head to get a B12 test or shot!
It is this attitude we should be looking at.

No one person on this forum has the same PN. We all have variants of damage that are unique to us.
And most of us are angry ...even if it is repressed to some extent. Why ME? We are also afraid....will we become totally disabled? Why are some so drastically affected and others not?

No one wants to hear medical information, that they caused their own cancer, for example. (even if it is true in some cases like smoking). And no one wants to hear that their lifestyle is "wrong" and must be changed. That side of the coin, the personal responsibility aspect, of illness is rejected by many people today. Slowly that is changing, but it is very difficult.
People still want that magic pill/bullet to fix them.

Dr. Weil is trying to get medical education changed, to include for new doctors courses in preventive medicine. His point of view is very valuable, and I hope he succeeds before he leaves this plane of ours.

People come here to see what is possible. They may reject some ideas, may try some ideas, may find some comfort by being with others who are in the same boat.
But remember WE ARE FREE of charge. You can take what you want and leave, no charge. Some people get better and do leave. I can recall many many over the last decade. I think I am the longest person posting (except for rose) here.

I am watching the research carefully. The diabetes problem is becoming epidemic. I am concerned that with all our knowledge the diabetes problem is not being solved well. The aggressive thinking by doctors in the ACCORD aggressive arm resulted in MORE death than was expected, and was closed.
That means to me that current thought is WRONG in how to address this problem. I am hopeful that genetic research will point to the culprit. Right now, I am looking at d-chiro inositol which I was looking at years ago. It is now available by two companies as a supplement for women with PCOS...who just happen to have pre-diabetes. It is very expensive, but I am starting a 3 month trial this week (long time coming via UPS--3 wks). I was discussing insulin resistance on this board (when it was at BT) in 2000!
It has been almost a decade and what we know about diabetes, insulin resistance has not changed, but at least this important form of inositol is now available. I am willing to become the guinea pig and try it myself. My fasting insulin was 34 last month! A very bad number! d-chiro inositol has lowered fasting insulin by 1/2 in women taking it in studies! That is only one example...and a major drug company is NOT making this into a drug--- YET. d-chiro inositol is made in our bodies from inositol. Something happens in diabetics to stop this conversion. So far studies show that providing the d-chiro form, reverses type II symptoms, lowers androgen levels (hirsutism) lowers fasting insulin levels and lowers elevated blood sugars...and that all of this restores ovarian function in infertile women.

This is only one example, of how managing pre-diabetes or diabetes type II may improve nerve functions. And it is a METABOLIC solution. Not a drug one.

[nide44]

David,
I must have been one of the first to read this initial post, as there were no other comments at the time - and I thought "What a great post!"
But I also thought that many others would chime in saying the same, so I neglected to reaspond with a trite four word exclamation........... I should have.
David, your expertise and experience in having found alternative means to control pain
is a great example to many of those who are having difficulty finding relief.
It also is a shining example of how we can, if we wish, try to get off the meds we are enslaved upon. Not everyone can do it.
I don't know if I can- but your knowledge is needed around here.
Don't fly off to the dentist or be upset. Just take a step back, breathe, and realize that we all are going thru various stages of our ability to deal with this problem. And some of us are coping in different ways. Please don't take any individual criticism too harshly. It may not seem the way it was meant.
Someone posted that if the same words that were written, were spoken aloud - they would have a totally different impact and/or meaning. It is difficult to try to emphasize what is said, without ridiculous smileys and stupid qattempts to make the keyboard an artist's palette [;-(>].
Please don't let this thread push you away. You've been missed, and are needed here.

[dahlek]

You and I might seem to come to approach the myriad of PN issues from opposite poles? But really, our goal is and should be to help others.
We both have experienced the pain, frustrations, anger, fear and more about this nasty condition.
Discussing aspects tho, pro and con about approaches seems to be such a tender issue. It should not be that however. The interchange and interdisciplinary discussion are valid and very worthwhile! Please let us be able to continue to do so? We have much in common aside from the PN [cancer, anti-biotic reactions and the list could go on] so, let us try and build on ALL of our collective knowledge... to benefit those who are finding themselves in this PN mess now - confused and in need of both knowledge and support.
As one forum member has learned? Many professionals DO seem to be reading our posts on these boards...and one professional reached out and has substantially helped this person. Isn't that what we really are here for?
Hope for all always! - j