Peripheral Neuropathy - What a pain!

[Midlander72]

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.

I can't wear normal trainers anymore as they are too tight, in fact I can only wear a pair of slip on shoes that I have for work and I managed to get a pair of wide fit trainers that don't seem too bad. Still hurts abut not as bad. I've bought quite a few pairs of shoes but found that I couldn't wear them as it was too painful. Wish I could walk round barefoot all the time!

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.

filling the bath ankle deep with cold water and sitting with my feet dangling in seems to sooth the pain though.

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.

[chriscameron48]

Hi Midlander, I can identify with so much of what you say & I also would love to go barefoot all the time, preferably on nice cool tiles. I find ice packs can help when it's at its worst, although really the answer is finding the right pain medication which works for you. That's a long term job of trial & error. You most certainly sound as though you merit a Blue Badge. I`ve had one for some time now & it makes such a difference not having to walk so far, as walking definitely makes the pain worse. It wouldn't do any harm to ask the Citizen's Advice Bureau for help in filling out the Blue Badge application form, as they know what sort of criteria are required & you're less likely to be refused. Good luck with that & with the whole business of adjusting to life with this kind of pain. It's not easy & no~ one seems to understand just how awful the pain can be. If you read some of the other posts you`ll see a level of desperation that is quite shocking in this day & age. You are most definitely not alone!

Anyway, best wishes to you from a fellow sufferer!

[everlife]

I have peripheral neuropathy caused by chemo for breast cancer. I take morphine and GABAPENTON and they help. Yes the pain can be terrible but I just try to keep going. I have to buy shoes from widerfit shoes hope this helps and good luck!

[Midlander72]

Thanks for the replies guys, I wish you all the best.

I was meant to go shopping on Sunday but I was in so much pain I couldn't face putting socks on, let alone shoes. Cupboards were just about bare and my ex-girlfriend (we still live in the same flat, long story) and I were back at work Monday.

She was totally out of order and we just ended up arguing and bitching because we had nothing for pack up etc. I knew it needed doing but I just couldn't!!

She was just like yes, I know your feet are hurting, I can hear you grunting every 5 minutes!!! Blah blah....

I was so annoyed. I wasn't too bad Monday and work shifts so went before I started work at 2.

Sorry but it feels good to vent a bit wit people that understand.

[JenGorm in reply to Midlander72]

It's vile I know !

I was diagnosed with it Jan 16. I'm not sure the explanation the neurologist gave me was true which was under active thyroid and radiotherapy fifteen years ago.

It's moving quickly up my legs and I've asked for a second opinion.

I'm scared I'll be wheelchair bound in pain

[numb70]

Sounds like me! I'm in the process of re - stocking all my beautiful shoes! I agree walking and standing is very uncomfortable, Only people with this condition will understand. Most people have never even heard of it! I am also a keen walker and love to walk around on holiday and visit places of interest. Now its very difficult. With regards to a disabled badge, that would be lovely! Maybe we should have a go! Good luck. x