This post is not directed at anyone in particular but because I have suffered from PN since November 1992 I felt I had some right to put both my facts and my opinions about pain and suffering (mine and others) down on a posting.

Over the years I have observed very many here saying that pain is subjective and that therefore none of us know the actual degree of suffering that anyone else is going through. If that is a fact and I certainly believe it to be, then none of us have any right to criticise anyone else for their attitude towards their suffering. If someone comes on board here and posts that he or she is at the end of their tether – no one should ever criticise them. We have every right to try and advise them because frequently the way a person expresses them self can either be a cry for help or possibly genuine. Criticism or even worse, hostility, can prove to put it mildly, counterproductive. We must be careful and never judge hastily another’s predicament and that certainly includes pain. The following explains my abortive fight against pain here in the UK and the total lack of professional understanding together with an almost total lack of effective remedies for the vast majority of PN pain sufferers.

Over my period of 15 years I have spent a total of close on £15,000 ($30,000) trying almost everything going to relieve my PN pain which was diagnosed after several tests as “idiopathic”. I have tried 2 types of the Rebuilder (the original wet and the present dry method), I purchased the Anodyne Home Unit (not cheap to export here) I bought a top range foot massager and a likewise footspa/massager. I have purchased 3 different types of Tens machines and an untold amount of slippers/shoes/trainers and heaven alone knows how many types of insoles. I have tried a variety of magnets including a high cost pair of insoles all of these with a high gauss count. I have tried soaking my feet in Epsom salts and rubbing numerous types of creams into them. When I start talking supplements and vitamins, well I take up to 8 in the morning and 7 in the evening – nearly all from the USA because Europe and the UK don’t approve of them and are arranging right now for almost all of them to be available on prescription only. Of this total of 15, 12 have been solely to hopefully help my PN.

In spite of all these gadgets and vits etc. suffice to say my pain is now at its absolute worst. I struggle every day to survive from waking to going to sleep again. Sleep is my only rest. I have seen 3 GP’s and 4 neurologists and everyone of them has told me the same thing. “There is no cure for your neuropathy, I can only try to reduce your pain level” but after being prescribed, Carbamezapine (Tegretol), Amitriptyline (Elavil), Neurontin, Lyrica, Oxycontin (modified and instant release), Topiramate, Fentanyl and Transtec patches (I could not take the side effects of these), I am now in worse pain (no scale) and feel I have a right to be despondent. With sleep being my only rest how do you think I feel about waking up?

I don’t ask for or expect any sympathy, this is not a cry for help, I equally don’t deserve criticism (although I expect it). I just wish to make the point that we all suffer in different ways and we all react to that suffering and our situation (and only we know what that is) in our own very personal way. The above might well be the story of many here but only each one knows how the pain feels to them and as we are all in differing personal circumstances, only each person in question knows how to cope – if cope they can.

I have been posting on the old Braintalk and here since 2003 and obviously have little to offer – positively anyway! I do however try to read all postings and am always looking for any helpful suggestions in spite of the probable cost. The old saying “You can’t take it with you” is appropriate here.

Tony

PS. I also have artery and gallbladder problems but these have in no way affected my above posting which would still have been word for word the same.