Drug Free Remedies for Chronic Pain
 

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. :hug:

Some ripostes?
 

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 :lookaround: - j

Right dahlek, but
 

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.

I am a bit confused?
 

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.

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.

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.

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.

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."

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.

I was the person--
 

--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.

No magic bullet...
 

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.

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.

David, as so many have pointed out?
 

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

I once told my internist that I read something on the web that may help me. He said "don't read"

That's funny.:rolleyes: He should tryout for cult leader.

I have been thru biofeedback training, way long ago...way before PN, and I am able to control the temperature of my distal body parts, which means, I can control vasodilation to some extent. It's been 20 years now, and I don't think my skills are as good or body as willing to conform.

I think there ARE non drug ways to help with pain, and if they work, it is best to use them. I took myself way, way down on pain med type and dose. I have a polymorphism that just does not allow me to take drugs. I am stuck in the 'alternative' to a great extent. I used to generate my own opiates from exercise....well, can't do that anymore....at least that I am aware of.

I do watch my diet, without being obsessive. Take vits without being obsessive, and in general try to do things that increase the quality of my life.

I think there is room for all kinds of ideas, and no one should feel a failure if some more natural methods don't work, nor should they discount natural methods without at least researching them.

Every one must walk their own path.

In the new year, I think every one can make a commitment to improve their own health in their own way. Since I can't drink booze that is one resolution I don't have to make....so, I am going to walk more, stretch, and eat less chocolate, and I joined a sustainable living social group. Yahoooo, I am a good time.:D

magnets and self hypnosis
 

Have been very helpful to me.

In fact I use my big 1 incher now before bedtime on my
groin injury...for one hr a night while I am reading.

Hi. Mrs. D.

I am ALWAYS looking for foods that help with Blood Glucose levels. Last week I began to eat Buckwheat Groats. So I've added a new food to my diet. And I began eating yogurt again.

The numbers went down.

Just now I googled d-chiro inositol. And on Wikipedia it said "d-chiro inositol is found in some foods and one of them is BUCKWHEAT!!

Go figure.

I'm glad I have a bag of organic buckwheat groats in my fridge.

It's not that expensive and a little makes a lot.

I wish you well on your d-chiro inositol.

Melody

yes, buckwheat...
 

but you have to eat ALOT of buckwheat to get what you
would in a supplement capsule.

I am already doing regular inositol. And tracking my package
thru UPS... this company...Discover Nutrition is very very slow.

I am going to reorder next month the Chiral Balance.(the other company)
I have uncovered that the parent company is keeping "secret" thru the web for Discover Nutrition.
Their Whois domain is registered to an address in Las Vegas, a strip mall! Not
great IMO. So I will not be using Discover next month.
Chiral Balance at least is reachable, and more consumer truthworthy.

There are only two sources available at this time.

I've always had elevated testosterone (found during my pregnancy). In those days PCOS was not so well understood.

This supplement is ferociously expensive. Almost $100 a month! I am hoping it will become more affordable.
But if a Big Pharma company decides to swoop it up, it will turn into RX only.

I am also doing well on the Curcu-gel curcumin.

Everything I am finding so far on PCOS/insulin resistance..
points to a genetic weakness. Once the symptoms show up, they sort of self perpetuate themselves.

BTW males respond to d-chiro as well. Studies included them too.

Some things never change.
 

This I suspect hints at past postings by myself in which I disagreed with recommendations regarding exercise when the patient was such as I, in considerable pain. The reference to strident defence of drug use stems from (and still does) the fact that I had tried everything possible, spending thousands of pounds (mostly in dollars) on gadgets and supplements. My feet pain was and is so bad that even walking a few yards or standing for a few seconds becomes agony. I gave up pain scales years ago because since developing PN in 1992 and trying every drug possible my pain has been slowly going up the mythical scale. I now rely on one drug to help me just a little with pain and that is Oxycodone.

I have been unable to exercise at all for at least 12 years because of the pain and that is what annoyed somebody at the time. There are no paths to my healing because by the time tests had been done and no cause was found I was declared idiopathic and told categorically that from then on only pain killing drugs would give me any relief. In spite of this advice I searched the net and came first to the old Braintalk and then here to listen and learn of any alternative remedies but as I have said I have been unable to find one yet. I will never stop this process for who knows what may be just around the corner?

Having said that, I find it frustrating to put it mildly, when I read once again that exercise, yoga etc is the answer for all (or most) simply because it has helped a particular individual. I have said how it pleases me to hear that exercise - in any form – has given someone considerable relief and if any PN sufferer is able to indulge in these pursuits I hope sincerely they too can benefit but in my case and I know in many other cases only drug therapy can help if anything can. I would not however recommend drug therapy alone until everything else applicable and available has been tried. There should never be too much emphasis put on any one particular type of treatment until and unless the individual’s doctor feels it is appropriate.

Finally may I say that I am very disappointed to see these matters raising their heads again after such a long time. I really thought they were well and truly buried in the past.

These comments do nothing to help those who are new here and desperately looking for some help.

This can be a wonderfully helpful forum to all who come here because there are many real experts to offer advice and many stories to share which might lead to help for others especially those who have just been diagnosed with PN or who are suspicious that PN may be the cause of their symptoms. There is always hope for these newbies to PN.


I hope this posting is not considered by anyone as a “tirade based on my biases”. After 15 years of PN pain, numbness, violent cramp and sleepless nights, the only thing I am biased against is PN itself.

Tony aka Adastra

Tony, I too will likely be on narcotics of some type my entire life. I think it is very important for folks like us, to not loathe ourselves for failing to modify our lifestyles and 'allow' ourselves to slip into illness.

I believe that a path need not be exclusively down the eastern or western road, and that balance usually lies in the middle.

We walked this road before, probably a year ago.

I worked in nursing for enough years to know people get sick. Babies, to young moms and dads, to boomers to older folks, and most of them were taken care of well, or tried to take care of themselves.

Some of my most difficult moments were in comforting relatives of deceased patients of all ages, that the illness was not the result of their errors or omissions.

Interestingly, I have used alternative methods way before I knew I was sick. by the time I went to the doctor, my disease was advanced. By the time they got the testing done, it was even more advanced. The stage of any disease will impact the success of any given treatment.

Some folks arrive at the diagnosis early, and other pitifully late. Disease takes different courses depending on genetics, environmental exposure, emotional and social stressors etc.

I am still a believer in Mother Nature, in many precepts of Eastern Philosophy, however, there comes a time, for each of us, when, we may need intervention from standard medicine. It is a good thing we have it. This is not to say that modern medicine is not driven, at times, by profit motives, and that many folks are overmedicated. Ironically, they are seldom overmedicated for pain.

Taking meds is utterly acceptable, and gives many of us a life that would otherwise be impossible. No one should suffer needlessly for lack of pain meds, nor feel a shred of guilt for taking them.

I think it is perfectly reasonable to throw suggestions or findings out to people to research and try, however, it is not reasonable to imply that disease, or severity of disease is due to failure to perform said suggestions.

Overall, this whole subject does need more .....
 

DISCUSSION. From all viewpoints! As the sceptre of possible MEDICAL REFORM looms over us? It is necessary to air our concerns about the good and bad of the medical professions, and, the attempts by alternative medicines to be accepted as legitimate. I do believe that IF we air it here? It might just be read! Trust me on this!
Folks such as Tony can certainly chime in regarding the 'delights' he has had to experience in the UK under a standardized system. What concerns me most, is that there are many who need key testing and help, but...cannot get it because they are not as fortunate as so many here who have insurance[es] that cover their multiple issues. They are literally doomed to SUFFER! and I have seen little indications by others to help these good people. Honestly, DO YOU want to pay their bills? Tell me true, Tammy!
I will look up and post the new incoming President's agenda and schedule of town meetings as I find them. I do know I've become involved in one group and have to get busy on a synopsis of a series of key questions....
If YOu don't ask, and don't contribute, you can't complain. Long term participation now is key to getting your own concerns on 'the list'!
I would like to think I am being proactive? But, having worked for that Gummint- I am not sure it will have an impact on ME in my lifetime.....At least, I'm getting my 2 cents worth in. Nuff said. - j

I think our medical system does need reform...I believe Germany is a country that has found some balance. There you can have your employer paid for insurance and all are covered by universal care.

In our system, if you lose your job, you lose your insurance. I live in the midwest where millions have lost manufacturing jobs. If my husband got sick and could not work, after some time, our insurance would be gone. I would join the ranks of the uninsured. Something has to be done.

Being a recipient of IVIG, I realize that if I lived in Canada or UK, this would likely be denied. I don't think our system is going to go that route, however, I imagine an argument could be made that to deny people basic care and allow some one Cadillac care is somehow unethical. I know of some members that are likely not getting IVIG due to Medicare not covering it??

However this is a new world, and this is politics, which is a hot potato subject and one that will cause much rancor on this forum...I am not getting my feet wet with that one on here.:eek: I think we need a separate forum for politics!

Is there ANYTHING anything out there in the world that will help body not feel numbness???? I have neurontin which takes care of the tingling pain that comes with my numbness..but the actual numbness is getting so darn irritating!!!! really badly. any ideas?? hugsss,sarah

The title of this thread “Drug free Remedies for Chronic Pain” would have inspired me when I first came upon the Braintalk forum some years ago. My pain was at a point where I could walk with some difficulty for about half an hour before I felt the need to take all weight off my feet. I tried, I really tried to visit places such as stately homes and gardens etc. but despite all my efforts the pain in my feet just got worse and worse. I never gave up trying to use my feet I am a fighter but no matter how hard I tried to exercise (I also went to my local private hospital for massage) I just could not take the pain for any length of time. Believe me I am not a weak person but who would walk on hot coals and broken glass forever?


I do not ask for sympathy (I hate it) for I know so many here are in the same boat. All I wish to say is I have tried so many things from exercise, massage, 4 different forms of electrical therapies and a multitude of supplements and vitamins. My view on Neurontin has been posted more than once, suffice to say I would recommend everyone to stay well clear of it. My only salvation in recent years has been oxycodone which I take as sparingly as possible. This allows me to drive and do my shopping parking with my disabled badge near to the shops. And also to take my wife out for afternoon tea during the week.


My current neurologist who has been seeing me privately now for ten years is only of any use when it comes to trying any new drug or upping existing ones.


Oh how I recommend anyone new to PN to try drug free remedies - if they are able. Prescription drugs are a menace but as in my case a necessary menace – as I am sure Dan with his fentanyl patch will agree. Like cyclelops my diagnosis came too late for any possible cure. It took some time for me to realise I had a serious long term problem. My original tests were done under the National Health Service since when all my consultations have been private..


One final point – all complementary medicine worldwide is under threat as I have posted here on occasions. This threat is very real and both Europe and the US are signed up to the organisations who have drawn up the ludicrously low legal limits for all non prescribed supplements and vitamins. If and when these draconian laws come into force there will then only be the drugs our doctors decide we should have. I fear for the future of those who are ill and like us, would like to try and help themselves.


Tony

Sabimax numbness drives me up the wall if i think about it, so i try not to. I dont know anything that helps with numbness. Numbness signals the severely damaged, near death or dead nerve tissue. The irony is to be numb yet in pain.

Tony I 've been here for a while as you know and I never would take you to be anything but a fighter. You are anything but weak.

This board is populated with fighters. People who wake up everyday, do the best that they can with what they have to work with and keep putting one foot in front of the other for as long as they are able. You are one of those people for a long long time.

Agreement is not necessary respect is.
We may not all be on the same level but we are all on the same boat.

thanks echos, I know what you mean...when busy at work on my feet, or busy at home...I dont notice it as badly...of course at times I need to rest and when sleeping or resting..or sitting it is awful; numbness and pain.

Dan...I think you are a testament to the fact that you have to try everything....but ya stick with what works. If one of these Docs actually stumble on something that works, you do it. I would eat a moonrock if it worked.

Mark

Re the patches--perhaps more important than pain--do the patches assist with hair growth? That is what I want to hear!

Wasn't this aspirin (from willow bark)?
I also have no financial connections with them, or indeed with any of their competitors. I found fentanyl a disaster, all the side effects, none of the benefits! One man's meat....

heheheh
 

yes, there is

1) willow bark --source of salicylates, aspirin

2) there is pine bark-- OPCs which are antioxidants

3) there is cinchona bark---source of quinine

4) there is cinnamon-- for controlling blood sugar

5) slippery elm bark-- for coughs etc

6) yohimbe-- for male erectile dysfunction

That is all I can think of right now... yohimbe sort of stopped my mind for a while! LOL:p

i wonder how many guys are looking up the yohimbe tree right now.

Recently diagnosed
 

I was recently diagnosed with Idiopathic PN at the Mayo Clinic. My neurologist did the nerve conduction study and ran several blood tests to check my levels of vitamin B and E and for diabetes. However they all came back normal.

She said the next step was to put me on an "anti-depressant" used to treat PN. I told her that I didn't want to start with an anti-depressant. That I really wanted more testing to see if we could figure out "why" I have this in the first place before committing to a drug that has side effects.

I just turned 50, have never drank, didn't do drugs, was physically fit so none of this made sense. When I asked her for additional blood tests to check for Lyme or a Gluten sensitivity she said that my regular doctor could do those if I wanted to. When I asked about maybe a MRI or CTSCAN she said that I could see an Ortho for those tests.

I was so frustrated, both with her and myself. I wish that I had pushed harder. What was the point of traveling to a "World Class Facility" only to be told to see my regular doctor. It was as if she was saying "I told you it's Idiopathic PN, now take this pain med and go away". With so many people experiencing this you would think that doctor's would be more open to figuring out what specifically is each person's cause.

I really appreciate finding this site and reading all of the great information that others have posted. It gives me hope that I will find a doctor willing to do more than just pat me on the head and write out a prescription.

Thank you all for your posts.

Welcome to NeuroTalk:

First off, you need a copy of your test results for the B12 and E.

Lab ranges in the US go down below 400pg/ml which is the new lowest normal. So to be sure your B12 is okay, you need the numbers. And yes even Mayo can be wrong.

April, I sure hope you find a better doctor soon.

Me too! I go see another doctor next week.

:) thanks!