Peripheral Neuropathy

[Richie68]

Hi all,

This is my first post, I suffer from numerous conditions as you will see by my profile but the one condition I struggle with more than any is peripheral neuropathy. This condition is unlike any other, I don't want to make it sound like my other conditions aren't very problematic neither do I want to disrespect anyone who suffers, we are all different but the pain from peripheral neuropathy is to me on a different level to anything I suffer from or ever have, it is a pain no matter what drug I have been put on, from morphine, tapentadol to the chilli patches (cutenza patches) and injections that will not abate.

The pain varies from hour to hour day to day, my legs, feet and hands go from a feeling of literally being barbecued, sliced by a million razors and dipped in acid to walking on a fire pit full of broken glass or being locked in blocks of ice whilst having a thousand needles rammed into every joint and the tips of every digit, it is sickening and beyond any pain I have ever known or any surgery I have ever recovered from.

Ironically if the explanations I give for the pain were actually done to me, then I would feel nothing. This is a condition that has happened to me for no reason at all, no practitioner can give a reason, I am fed up of being told I am diabetic when I'm not as this and chemotherapy drugs are apparently the main causes but I have had neither.

It was diagnosed by neurologists following nerve conduction tests and sensory tests, the nerve conduction test showed no reactions at all below my knee so this was diagnosed as severe damage and my forearms and hands showed limited reactions so was diagnosed as moderate to severe but in both limbs below elbows and knees there is no sensory feeling to pin prick or cotton wool tests.

I have literally tried every drug there is, every cream, lotion or patch, the last was cutenza patches which is extremely potent chilli paste applied by a consultant wearing safety glasses, gloves, apron etc who was coughing and sneezing at the odour but was astounded to see that my feet showed no reaction after the patches were left on for 30mins over recommended limit, after a hour I felt nothing and there's been no lessening of symptoms. My consultant at the pain clinic said that the damage to the nerves must go extremely deep and now feels there is little they can do to help or give me respite from this pain, I'm exasperated, saddened and at a loss.

So eight years after being diagnosed it seems treatment is at an end and any hope of even partial relief from the pain is over. This is why I write this post, to seek advice from others suffering from this cruel illness and to see if they can offer any advice from their own experiences and treatment as I now feel after trying everything possible to find an answer my future is one of absolute hell, my other conditions and illnesses aren't easy but they are manageable but Peripheral Neuropathy is one stubborn, painful and life changing (expletive, expletive) I have ever come up against!!!!!

Any help and advice gratefully received???

[Ginakins]

Oh Richie68 have I got news for you. FINALLY someone else who describes their neuropathy pain exactly the way my hands feel. Every min of every day. I've gotten no relief and been through hell with drs. I want to write more but the pain is so bad right now. I promise I'll write more later or tomorrow. Look at my posts and replies. You sound exactly like me right down to not wanting to spend your life like this. Living in sheer torture. I know.

Ginakins

[Richie68 in reply to Ginakins]

I Gina, please don't take this the wrong way but I am so glad (to other replies to my post also) that there are others who understand and are going through what I am. I don't want pity or sympathy just want advice, learning and understanding, my wife gives me compassion and care in a plentiful supply but because no one I know suffers this awful pain I sometimes get frustrated, hence another reason why I took to this app (it really has enlightened me).

I have had two responses to my post and read a couple of both of your posts and that in itself is empowering. Knowing someone else understands.

I don't want any other person to feel this pain but to know others are finding a way through despite the hardship, it is heartening and to listen to others who are not yet finding a way fills me with the desire to explain how I manage or sometimes manage.

I have sadly been at that point where I have done something stupid and wanted out but now I know how wrong that was, don't get me wrong I don't believe I was selfish or cowardly, I just hadn't found the respite or distraction away from this awful pain that we all need, just to exist in some fashion. All It would have achieved was to pass my pain and suffering onto those I love dearly and taken hope away from others who suffer this cruel illness or another illness that leave us at the door to hell.

As I have said I have suffered many other injuries, illnesses or had surgeries that have either temporarily left me in pain or left me with long term pain and I guess every living thing has similar times as we age or get older but unlike this pain which made I expected and understood the reasons why because it's like our bodies are set up to endure them, peripheral neuropathy appeared from nowhere, without reason and not in my wildest imaginings could there have been a pain like it, no one who has not suffered this pain can begin to imagine it, I'm not trying to top trump any other condition that leaves us in pain or disrespect anyone else who suffers but no ones imagination would allow for a crueller pain.

It is beyond explanation all I will say is don't give up, life is precious, many people would so wish they could live regardless of what pain they would be left with, just to spend hours with loved ones, time to be outdoors or just time to sit alone and watch the magic of the world we live in as it unfolds, simple things like the blooming of a flower, lightning as it forks or a child taking their first tentative step, we may suffer but we get to see the magic.

As I've said in my post and on my profile in my 8yrs with this illness I have tried everything and every drug, the combination I take now thankfully does not include controlled drugs that make me feel like a zombie or lacking in any emotion but the ones I take now do take time get used to you and you used to them.

Lyrica Pregablin definitely works, it won't cure or remove the pain but it'll take a slight edge from the pain, I think from what I know, this is the best we can hope for, I take maximum dose of 300mg twice a day, I take 30/500 cocadomol x 2 at max daily dose, 50mg of amytryptyline at night and 10mg (maybe mcg) of clonazepam if and when required but no more than 14 tablets per month, these are the meds I take for peripheral neuropathy and fibromyalgia, I also take 500mg of Naproxen twice a day and omeprazole for arthritis and calcifying tendinitis in shoulders but they may also be helping the neuropathy.

I see a pain clinic about once every two months, I touch base with my GP at the same frequency.

The pain clinic ran a 10 day pain management course with others who suffer chronic pain, this was incredibly helpful and provided me with a huge insight into my body, my mind and meds.

Luckily in this country we don't pay for our health to be cared for and in my country (Wales) we don't pay for meds, our NHS has its flaws but none of us would be without it. Pain clinic in this country gives me access to a pain Dr, a psychologist who specialises in pain, physiotherapists and occupational therapists, it also has highly skilled pain nurses. This help is invaluable but there has been no illusion that they can cure the pain or even lessen it to a manageable extent and I now know that the best I can hope for is short periods of slight relief, where I am able to manage to do some normal activities and I also know that Pregablin definitely takes a slight edge off the pain. Distraction is a definite help, no matter what it is, watching a film, planning or cooking a meal or going for a manageable stroll.

Along with this illness comes depression, anxiety and insomnia, social interaction is also troubling. So these also need attention, if these are not somehow balanced out and kept in check the pain will be worse that don't sound possible but one thing with this pain I do know is never drop your guard and think this pain cannot get worse because it will.

So I guess what I'm saying is the pain is not curable, it will always be a constant and is always going to be hellish but without the right meds, the right help and support and without the right mindset it will take you to the doors of hell often, so don't just look for help to treat the pain because nothing will cure that but get everything else running smoothly then the more chance you will have of slowing down a very vicious circle that is not only made up of pain but many other elements, that with the right help and support can be controlled thus allowing you to concentrate on managing the pain.

I hope this makes some sense and I hope that we can all find a way some of the time, that does allow us to live just that little bit easier.

[Suzyhayes]

Richie i feel your pain literally in my hands. It seems there is no cure or treatment that works for neuropathy. I've suffered from this condition the back of my head and hands for five years since having surgery for cervical stenosis. Your descriptions of the condition are spot on. I sometimes describe it like having my hands in a nest of wasps.

There is no cure. Some people smoke canabis but that didn't work for me. I just concentrate on diversion therapies. If you can get engrossed in something it can take your mind off it a little bit. In the evening I usually drink red wine which takes the edge off but not for long.

We are so unlucky but try not to let it defeat you.lol

[Bennett1943]

I cannot offer any help or advice to you that will ease your pain but I do wish you well .pain can be a lonely partner but there are very many blessings and I do hope you find them.

[cmoon]

I'm sorry, I'm lost for words. Someone has at last put into words that which I could not. With your permission Richie I would like to print your words to show to my Doctor and my pain clinic to somehow, just somehow make them comprehend at least a tiny bit of how this kind of pain is.

My pain clinic's answer is to stop all medications and do more exercise!!! My nightly pain relief concoction is roughly as follows (I do vary it and go cold turkey on one drug at a time so as to reduce my body's restance to it if you see what I mean) but do not try this yourself. I have done this for over 16 years solid now.

I'm sorry I can't do this now.....but I will write later, so much pain.

Sash

[bobknob51]

Hi Richie I was quite horrified reading about your painful condition I feel so sorry for you and I'm afraid I can't give you any advice.I do thank you for giving me some insight of what I should expect in the future.I was diagnosed with peripheral neuropathy 2 years ago and have had pains in leg and foot.but lately it's affecting different parts of my body.You see I get pains in my lower back or in the joint of my fingers and my GP blames it all on neuropathy.I'm afraid other reasons for my pains are being ignored. I wish you all the very best Richie keep your head up mate.

Bobk

[Cb1963]

Richie68,yep the pains associated with PN are beyond belief,I was diagnosed over 5 years ago and to be honest with you I don't think there's been much medical advancements in this condition regarding pain relief,the pain it's self is relentless and comes in all sorts of guises and we all describe it in our own way,and definitely does change from hour by hour,and I can only sympathise with you,and I don't think it makes much difference if you went for private health care(bupa) that you/ we who suffer with this condition would receive any different medications,be interesting if anyone who has sort a private consultation and had some sort of relief with different types of medications,yes I feel exasperated and basically I no longer go to the doctors as I to feel like I've hit the end of the road with pain relief,I've been on pregabilin 300mg twice a day and take 30mg of mirtazapine at night time,I put lidocaine patches on each calf muscle at night time and these contain a local anesthetic and numb the area but this is only minimal relief,as bedtime looms the dreaded burning sensation is already full steam ahead,trying to accept the condition and understanding why you've ended up with PN may give you some insight,but as your probably aware that's not going to cure you,I've stopped taking alcohol and am tea total and I'm lead to believe that this can aggravate PN and cause even worse symptoms if at all possible,so I'm like you looking for Jason and the Argonauts with the golden fleece to find a cure,all the best in your quest for relief.

[jaybrody]

Your description of the pain is spot on, you put it in words exactly as my own pain and totally get you. It is horrendous pain, would never wish it on anybody

[healthylass]

Neuropathic pain is horrendous to deal with not just the physical side but the mental side too. Have suffered now for 9 years ago after abdominal surgery for some reason not only does this pain effect my abdomen but my right leg. The side effect of medications (duloxitene, pre-gabelin, co-codomol) make it more difficult to deal with. I usually write all my feelings down in diary as if talking to somebody and feels this helps me. Also take Vitamin B to help with the burning sensation and pins and needles and find this does help quite a bit. Have put on a lot of weight over 9 years dealing with pain and have varicose veins and recently lost lot of blood due to veins bursting. Waiting to get stockings and ultimately surgery to sort this out. Due to this condition cannot work which makes things very tight financially. Chiropractory does help but cannot afford to pay £40 per treatment now so will just have to soldier on.

If legs burning also feel mint rub helps. Mint seems to be very good at soothing this. Used to attend pain clinic but they say they cannot help me anymore. They were giving me Lidnocaine infusions but have severe reaction to them so had to stop having them .

[Midlander72]

This description is spot on!

Mine started about 8 yrs ago. I thought I had bits of gravel in the bottom of my shoes. I actually took them off and shook them upside down and put my hands in them to see if I could feel anything there....of course, there was nothing!

Never thought much about it, was just a mild annoyance.

A couple of years later it had gotten worse and the sensations you mentioned were there. My toes were both numb and hypersensitive at the same time. The slightest knock to them had me reeling in agony.

I had been tested for diabetes a few times before as I had some symptoms but it always came back fine. Both my mother and her mother had diabetes, my grandmother had to have her legs amputated because of it. years ago now, bless their souls.

Anyway, i was sent to a consultant who did tests and finally said I had PN, and there was nothing they could do as they couldn't find the cause of it (I was convinced I had diabetes and that was the cause).

Went though all the different pain meds, Amatriptyline, Gabapentin, etc, etc, but nothing worked.

My brother who is a few years younger that me was diagnosed with type 2 diabetes so I went back to docs for yet another test and this time it came up positive. Not that anything can be done now but at least now I know. Metformin and diet change are helping with that.

I was a Nightclub Doorman and had to give it up as I couldn't stand for the hours on end that I had to do. I still do my full time job as a Security Officer but worried about how long I'll be able to keep this up for, though my colleagues are great and let me man control most of the time so I don't have to stand. I do still have to do patrols and other stuff though and by the time I get back to control I'm limping from the pain.

Heat seems to flare it up and if I have a nice hot bath I can hardly walk when I get out, the pain is so disabling in my toes.

I used to like walking, going on holiday and exploring (got halfway down the road last year and had to turn back because of the pain). I go to concerts quite often and have to pick seated, even then when it's a big arena like the 02 here in the uk it can be a hell of a long walk round the arena and from the car park.

Has anyone tried or where would we stand on getting a disabled badge? I feel this would help so we wouldn't have to walk as far.