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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.
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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.
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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.
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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