Any UK based Peripheral Neuropathy sufferers out there?

For a couple of years the pains were getting worse and worse and no one was taking me seriously I actually started believing that I was a hypercondriact 

Then I got diagnosed with diabetes and 4 months ago diagnosed with NP 

Some days all I want to do is hide away and cry but I push myself to keep going 

All the health care professionals keep telling me I need to lose weight but even after changing my eating habits I still keep piling on the pounds 

After an 8 hour shift mostly on my feet I can barely cook dinner never mind go for a brisk walk or the gym 

I guess you have to have it to understand it 

Now every new pain I get I’m scared of my left arm and shoulder have been so bad for weeks now and the other day I was chopping something my hand started tingling the knife went flying out my hand and stabbed me in the leg 

Carpal tunnel in both hands it’s just getting me so down I can’t afford not to work so every day off I go praying that I might have a good day 

Thank you all for sharing don’t mean this horribly but it’s comforting to know I’m not going made and there are others out there who understand x

Hi I'm a 69 yr old chick who truly feels for you as i to have similar symptoms . Conditions worse over period of 3 years. I'm a shadow of my former fun loving self. No actual diagnoses but I was told some time ago it could be p/n ??? I researched my symptoms over long period of time and closest I came up with is damage to sensory nerve system. Docs won't listen! Have tried mainstream therapy as well as alternative. As we know the symptoms are rudddy awful to live with. I don't bother to go to gp any more as feel I'm looked upon as a Nurotic, Attention Seeking woman as well as other titles plus two heads. I do hope you get to see Neurologist soon and that there will be a positive outcome for you.Big Hugs ✨

Hi, I hope I can help.

I have had Peripheral Neuropathy for probably 10 - 15 years, it is hell to live with especially when you have a flare up. I have asked the question many times what has caused it. I am not an alcoholic, in fact for the last 6 years, I have not touched alcohol. I do not smoke, I am not diabetic. So no professional could tell me. I have seen every profession possible including professors of Neurosurgeons, neurologists and foot and leg professionals searching for an answer. However I have been diagnosed with a glucose intolerance from time to time, just had another HbA1c and it was normal and again not diabetic. Now during my many years, I was a slim athletic man until about 40 years old when I put on a little weight not a lot and carried that until I was in my 60's, so what has caused it. I have questioned general anesthetics as I have had a total of 10 over my life, I have even questioned alcohol but never drank in the house, never drank shorts and we had a bottle of wine on Christmas day. However I did have a few pints now and again in the pub and when I say a few, I mean it. When I was young yes I did indulge in a few more beers on a Friday night with friends. So what has caused the PN?

I think I can answer that, I was brought up always to eat my food, if I did not I had to eat it the next day and as a young athletic man I loved food, living with a family of cooks it was hard not to. Lets face it I did not put weight on in those days. However I have carried that on through my life, cup of tea and a packet of biscuits if was not careful. That with working late and evening meal late before bed, no consideration for blood sugar level especially after going to bed plus I could eat for England.

So I have this PN and it is painful, it has effected my muscles in my legs and yes my feet and legs are numb. I am retired now but I was a qualified mechanical engineer and ran an engineering company, I am the type of person who thinks about problems and PN has took a lot of my thoughts. PN is basically damage to the peripheral nerves and basically think of it as if the shielding has come off a piece of wire as your nerves are the bodies electrical control system. First of all get yourself a blood sugar monitor and use it before meals to check the level of your blood sugar. Make a chart and record it. Your blood sugar needs to be from late 4's to 6. It will go up after a meal but should come down again. Take your Blood Sugar also before you go to bed. I found if its in the 8 - 9 then I am usually in heavy pain, so going to bed is bad with it that high because you cannot burn it off. Best to go for a walk. Next control your weight, I do it by eating just three meals a day and nothing else. Do not eat late evening and do not eat large meals and go to sleep after on the sofa. Once your nerves are damaged then high blood sugar just irritates your nerves like putting salt on a wound. Exercise, walk regularly or just do something physical, you will find your feet may be painful to start, but it will increase the blood flow and lower your blood sugar and you will find it will give you some relief. However it is tempting to eat afterwards but try and avoid it unless it is meal time. So work on your life style, weight, exercise and keeping your blood sugar down to normal. Do not drink alcohol that will just increase the damage to the nerves and again raise your blood sugar.

Hope that helps.

Hi, I have some suggestions, Ive just turned 77 and I might not of had this problem but for my coeliac condition no diagnosed 40 years ago.

I have pain allover but I only take amatrip 10 mg at night.

First I use a large massager twin head 'ebay' all over at pain points it will hurt at first night and morning,do not ware slippers,gets some boots on the large size with thick socks lase up tight, do not dig the garden. Stretching layed on back, use elastic tubes on legs if you walk half a mile or more. Bye a electric bike for a bit Of adrenaline I use a motorcycle to chillout you will be surprised and forget about pain. Go on the Haye diet itwill give you a boost.

Howy.

Hi ,Is it just pain or do you get leg muscle twitching spasms and stomach spasms , are you low on b12 vit or iron, loosing weight, have you been checked for Coeliac disease.

Howard.

it can get worse ive had it for 5 years started in feet lower legs now upto my knees in my hands upto my elbow also recurring foot ulcer just had emg test nerves in my feet legs all dead only 50 percent in hands and lower arms the real kicker was when i asked how come i only have to walk couple hundred yards and the pain becomes excruciating he said you have no muscle left in your legs when you walk its like your walking on your bones still getting my head round that one

I have read all your posts and have the greatest empathy for you all. My dad is suffering unbelievable pain and no drug or treatment is taking it away. His mental state is in decline as a result. He sits at home all day, unable to get going because of the medication. It affects me as i cannot bear to see him like this. I want to know if money was no object is there an effective treatment? I would sell my house to get him a better quality of life. Please help if you can. I'm just s normal guy trying to help his dad

I'm the same , I'm sick and tired of the Doctors throwing different drugs at me too, with no idea of how I should take them. The latest they want me to take is Duloxetine, which after having read what other guys and girls have been through while taking it, they can forget it I'll stick with Gabapentin. Today is red hot weather and Ive spent more time with my feet in a washing bowl filled with cold water than anything else. Is it me or does the heat make it ten times worse? Haven't worked for 3 years now, cant drive, cant go shopping, cant do anything without having a bowl of cold water close by. I wake up in the morning and my legs feel like Ive got two concrete slabs hanging from the end of them. "It's Peripheral Neuropathy" the Neurologist tells me, "and people learn to live with it", yeah well cheers for that but if you don't mind, I don't subscribe to that theory, I'd like to get better. I'm booked in with an Acupuncturist in 2 weeks time, I'm going down that road to see if that works. Hope they can help me? I hear Y'all and sympathise with what you're all going through. Sending love and healing vibes x

Please take a look at Solutions to Peripheral Neuropathy on FB there are plenty of resources to discover and experiences from the UK. I have had PN since 2005 gradually encasing my body feeling like I was wrapped in barbed wire and frozen in ice and a brain that could not absorb the simplest details. I know the pain. Just go slowly you like me will find an answer and a way to ease the grinding pain and mental anguish. Wishing you the best of outcomes. X

Hello BigG101,

So sorry to hear you are suffering so badly. Please try not no fall into despair although the condition is absolutely horrible.

I am based in the UK and have suffered from peripheral neuropathy since February 2019 having been in hospital for 2 months suffering from a nasty pneumonia and an abscess in my lung (life threatening). I had been on intravenous Penicillin and Metronidazole treatment for those two months and when finally discharged, still had to take the same drugs orally at home. The nerve pain and tingling started quite out of the blue soon after returning home: I woke up one morning to find a burning sensation in my feet and very, very painful and highly sensitive to touch. The pain and discomfort soon got worse, even driving was agony and probably dangerous. I am retired so don't have to go to work. Over the past two years I think some discomfort and pain has slightly reduced - or perhaps I am just become accustomed to it? I used to be scared of going to bed because that's when the tingling and pain became worse and it took hours to fall asleep, now not quite so bad, but I am still apprehensive at bedtime.

Initially I was prescribed Amitriptyline which didn't make any noticeable difference so I asked if I can to stop taking it. Eventually I had a telephone consultation with a neurologist, who started listing other drugs such as Gabapentin without seeing me in person (it was during lockdown). I wanted to discuss the effect of the high doses of the antibiotic Metronidazole I had been given in hospital. I have read every published study about Metronidazole causing peripheral neuropathy and to my mind this was the cause for my condition because comprehensive tests had already been carried out to eliminate any other causes. Eventually he agreed that this may well have been the cause, but could not offer any help other than more drugs. So I decided to wait and see, taking no medication whatsoever, just making sure my diet is healthy and supplementing this with some vitamins.

I have not taken any medication at all for more than two years. But wearing socks and shoes is still absolute torture! Walking is painful and the weakness in my lower legs and feet is quite scary as I am widowed and live alone, so even household jobs are challenging. On top of which I am in desperate need of a new hip joint - the combination is preventing me from leading even a near normal life. I used to enjoy going for walks, now a one mile hike to the village store leaves me exhausted and on return I cannot get shoes off my feet soon enough and sitting down for a while. There is however, one thing I can still enjoy: cycling! This has been a godsend during lockdowns and it is the only form of exercise I can enjoy without it killing me.

Some time ago someone wrote on a forum online that the condition does sometimes go away by itself, but that it can take a long time, even years. So I'm hoping this will be the case for you and me. Fingers crossed!

Stay positive, stay safe.

I have just joined this forum. I am 72 and diabetic, diagnosed about 3 years ago. Many years ago, maybe 20, i had sensations on top of a foot that i put down to surgery for a varicose vein. This sort of settled.

Now i have burning in both legs and feet. In the right leg its up to my thigh, in the left leg its up to my calf. Yesterday was the worst ever. I couldn't even bear to wear soft slippers, they felt like sandpaper.

Ive had severe 24/7 rls for 30+ years and use Codeine and pregabalin to treat this. Quite successfully. However the pregab now at the max of 600mg/day was doing nothing for my neuropathy yesterday. I started attending a Mobility Disorder Clinic a month ago and the neurologist increased my pregabalin from 400 dai!y to the current 600. I 'm not sure if the increase was for the rls or the neuropathy. Either way it should have helped the neuropathy but didn't seem to and yesterday was the worst ever. That following the increase of 50% surprised me.

I have several medical issues and considered my rls the most difficult...... Until yesterday when my neuropathy was the worst I'd ever experienced. Sometimes i hardly know if my discomfort is the rls or the neuropathy, they seem to often be happening at the same time. Its now 6am and ive been wakened since 3am. The neuropathy seems to be easing a little and I'll try sleeping again now.

Sorry i am rambling.

Happy to have found this forum. I don't know anyone else in real life who has neuropathy. Or who has rls as severely as i do.

I wish you all well.

hi!!

i mean this with as much love as possible, but ive just found this forum and know im not alone.xx