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.

Tony,
I believe that each person has their own level of tolerance for pain. Some more than others. While one person's pain may in all truthfulness be the same as another's pain, the ability to tolerate it is different. I tolerate a lot of pain but I know from watching my husband, mother, dad and others that people are different in the way they sense pain. My husband had to have back surgery just a few months ago. He took pain medicine only 4 days after he returned home. He stayed only two days in the hospital. He takes nothing now. He is a special man. He has a 3 inch scar on his back and they had to take out bone. But he tolerates or senses pain differently from most and others are the same way.

I've been walking on a broken ankle and broken foot, exercising with broken ribs, and only recently found out why I couldn't get out of the bed...a broken sacrum on top of a broken thoracic spine. Pain meds? I took them in the hospital for 4 days and then took myself off of them because the side effects were intolerable for me. All of this with PN too. Am I in pain? Yes,...lots of it.

I understand what you are saying and wish there was some way I could help. You are entitled to feel whatever you feel.

Billye

your pain Tony... I wish I could just wave a medical wand for you and make your pain
disappear!

You are a very brave guy.

Nothing I can add to what everybody said.

I'm just beginning my neuropathy adventure. I call it an adventure because I never know what my feet will be up to. Today I dropped a glass bottle on my foot and the electicity reaction, well, let's just say I wasn't a happy camper. But nothing close to what you and the others are going through.

I have begun a regimin of Methyl B-12 (don't know if you have taken this) but since I began, no more burning, or freezing, or buzzing. So for me, this is a very good thing.

I take 5000 of the methyl b every morning on an empty stomach.

So, I'm just sending you a hug!!!

Melody

Tony, it is true that I can't know exactly what your pain is like, but I do know what it is like to just get through the day in hopes that sleep will come for some relief. I know what it is like to not want to wake up. I am doing better now thanks to medication. I do think that if we can hang in there, new drugs or treatments will come along. At least, I hang my hopes on that. I also cope by being a couch potato. I can manage to get some stuff don e for 3-4 hours in the morning, then I have to lie down and I turn on the tube to distract me from the pain somewhat. I have the tv and my laptop. That life of a tv watching couch potato is often referred to negatively, but I refuse to feel guilty about it, as that is the way I get through the day. Pain means its okay to be a couch potato! I am hoping for all of us that there will be some real breakthoughs coming down the pike for pain treatment.

Hi Tony, i am sorry to read your suffering so much, i know you have been trying very hard for a long time to find relief, i only wish i could help you in some way.

I do also agree that know one should be judgmental on the extent of some one else's pain, a forum like this is suppose to be supportive, thats the whole idea i thought.

I will keep my fingers crossed in hope of some relief coming your way soon.
take care mate.
Brian

--and for each of us, it probably sucks differently.

And, it sucks differently for any given individual at different times. I know that during the "acute" phase of my small-fiber neuropathic burning, the pain I was experiencing was by far the WORST pain I had ever experienced, and that's how I would have described it. Now, though, while I still have pain (and it is controlled)--even when I have bad flares, which I would think objectively compare with some of that earlier pain, I do not describe it in those terms any more--it is almost if I have become "used" to it, and it comparatively doesn't seem quite as bad as it did originally. (I've become inured. I have a "new normal".)

On the other hand, when I first tore the right trapezius and rhomboid muscles in September--hoo boy. That was enough to make me almost forget about the neuropathic pain for a while. And, when I broke a toe last July (little toe in right foot), while it hurt, it didn't really feel THAT bad. The podiatrist was apoplectic--when he saw the x-ray, he asked how I was walking around without asking for painkillers--and I just said I've had interesting experience with pain the last four years; this hurts but I can tolerate it. (It did eventually fade over several weeks.)

I know we are so individual in our pain responses--and so varied in our tendencies to be stoic or not--that anyone's pain complaints really should be taken at face value, and not with the presumption of exaggeration that so many physicians seem to have. What we have to push for, when we can, is more medical professionals taking our pain claims seriously and searching for ways to help us reduce the suffering.