NeuroTalk Support Groups - Drug Free Remedies for Chronic Pain

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

Quote:

Originally Posted by hoibie@comcast.net (Post 436750)

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.

Quote:

Originally Posted by mrsD (Post 436522)

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 These may be temporary, and when withdrawn healing may occur.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.

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.

Quote:

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.

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.

Quote:

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.

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