I was diagnosed with Peripheral Neuropathy early on and i remember! er being advised that it could travel and spread to the original injury site. So far, 4 years on it hasnt and i so hope not because where I have it now in my feet drives me nuts:o
I really hate to use the words "give up" but that is just not what I do. Like so many others in the same situation. It is forums like this that really keep my motivation up. I have an awesome support system in my wife which is a very big reason as to where I am today. My children was young when I had my accident and now both adults and out on their own. They said that my never give up attitude gives them motivation still to this day and has helped them a lot in life. That to me makes all I've been through worth it.
I think its true that people with Spinal Cord Injuries are made from strong stuff, lets be honest we have to be! There really isnt an option,i think if we actually stopped and assessed everything we have been through and still deal with, we would be amazed at how resilient we are.
It's that sink or swim scenario i guess, you just pick yourself up, dust yourself down and keep going. A support system at home makes a huge difference, i am sure.
Thanks Lara for the great article on neuropathy. Hang in there jeff1967. Boy, I feel your frustration. It's something invisible to others. They see me sitting and looking okay, but I can get so distracted by my nerves that I blank out during conversations or eating dinner w/ family. My greatest area of affliction is my pelvic floor (legs/ feet at night) It has goten so much worse in the last 6 months. It used to feel like electric underwear....Now it is from hips down to feet at its worst. I have tried so many treatment from urogynocoloigist. Done w/that, as Doc want me to do Osteopathic manipulative therapy. Basically chiropractics in vag and pelvic structures. So I have been, and am on the Medication route....Gabapentin, Valium @ nite, baclofen, and I inject on my own w/ methylcobalomin. Then there are some narcs......I hate it. I've tried cutting back and the INTENSITY of nerve pain gets unbearable. Again not seen on the outside by others. How would you explain ??? Temperature is a big factor as well. I would love to follow a more natural path. Going to try R-Alpha Lipoic. Also, if I lay on my stomach and concentrate on breathing w/ quite room it helps me kind of reset. And movement is good as ell. I try massage too. Good input here.
Your so very welcome ladylame5 and you are so right because this is the hardest thing to explain. There is such a variation with nerve pain and it can affect in different places, with no pattern.
The only consistence i have, is that i know for sure, my feet will burn every day and as you say, temperature is a big factor. Music does help me and keeping our minds busy helps!
I have peripheral neuropathy, everywhere below L3 except the front of my lower legs. I have hyper sensitive knees, and am unable to sleep on my side with one leg resting on the other. I have to sleep in 'striding' position. I have been advised that nothing will relieve the problems. I get the full range, of crazy sensations, pins and needles, 100% numbness, extreme heat, extreme coldness, and variable sensations which feel like I have wet my myself ( sometimes I have ). This is in the form of phantom feelings of water running down legs an inside of thighs. My nerve system has basically crashed..... Its a pity you cant Ctrl - Alt - Del ? to restart. I should add that this has not spread at all. It has been like this since my accident. Sympathy to all other sufferers,
I guess we should all be used to hearing these stories but it doesn't make it suck any less when you hear another one. If I want to sleep on my side I have a small pillow that I put between my knees. I've never heard of anyone else having the "water running down my legs" symptoms before! I guess it isn't just me and all in my head. Unfortunately mine was the same for 18+ years but the past few months has gotten progressively worse. Some of the doctors that I've seen just look at me like I have 3 heads when I explain to them what is going on with my body.
randomro,that's a lot of pain, do you manage to sleep?!
I remember when i firstly started with the nerve pain in my feet, I had terrible pain in my ankle too. Did anyone else notice joint pain at the onset of their nerve pain?
I feel hypersensitive from my knees and below...
jeff1967, I think that its almost impossible for anyone to understand the complex experience of nerve pain unless that have experienced it themselves.
I remember when i firstly started with the nerve pain in my feet, I had terrible pain in my ankle too. Did anyone else notice joint pain at the onset of their nerve pain?
Yes, I have severe joint pain in my right ankle. That is the main reason for taking the pain pills on a regular basis because it can be so bad that it will wake me up from sleeping every night.
jeff1967, I think that its almost impossible for anyone to understand the complex experience of never pain unless that have experienced it themselves.
You are correct Lara. I guess I am hoping that one a doctor will at least act like they have some understanding.
I do manage to sleep, better than I used to. Tried the pillow between legs but as I have to roll left to right every 20 mins, it got to be a problem. GPs and other s do not understand..... I have no useful feeling, L3 down, except for pains, and hot / cold. As regards the 3 head comment... I agree. Why cant the DWP recognise CES as a disability. Just because its virtually invisible ? Oh Well must bash on . Keep Smiling :-)
There is a new system now called 'PIP' and its easier randomro but DWP should recognise Cauda Equina. You do know that you fill the form in as if it is your worst day.