hello

[dianne633]

Hi i have only just found this site again, haven't been here for quite awhile thought
i would pop in and see if there was anyone on the site.

[leaf]

Hi, I've been looking in from time to time. I managed to meet up with someone that used to frequent the chat rooms on the old server, that really made my day, brought back memories of the way the chatroom used to be 5 or 6 years ago.
What type of PN do you have?
I have a hereditary sensory motor neuropathy, but not CMT, one of the same genes but a different mutation. It causes lots of pressure palsies.
jon (leaf)

[dianne633]

Hi jon
glad to see someone else on here, my problem is my feet from diabetes, haveing a hell of a lot of trouble at the moment so i thought i would come on here and see what was happening with others, i used to go on the old site years ago and it was alway busy.

dianne

[joy]

My diagnosis is idiopathic peripheral neuropathy. My toenails are all turning black and falling off now. I haven't felt my feet in ages. I manage to walk fairly well but what distresses me is tht my hands are dying also. I will really hate that since I already have a difficult time with zippers, buttons etc. Hubby has to put earrings in and I wear the same ones for months and months. At least I haven't had any sores on feet requiring therapy for months on end like I did at first.

Most who have neuropath post in pain forum or like myself in the emotional forum. I have other things wrong so that way I cover it all there. Not many post here like it was years ago. Wish it were otherwise as I know the numbers haven't lessened that have neuropathy.

[Ging]

Hello all, I am visiting from another forum , my husband has painful neuropathy
In both feet. he is diabetic and is on so many meds that it worries me. Most of the medications are scripts that are usually given to treat seizures .He still has pain no matter what the doctors give him.
He can't wear shoes ,only sandals and even those are a problem, do any of you have any information on what type of shoe he might could try? , do your doctors keep adding meds on top of the ones that only work a little? Stacking medicine concerns me. For him. Sorry for any misspelled words , I am just recovering from aneurysm surgery. Thanks for any information any of you can give me, GING :)

[dianne633]

Hi Ging sorry it has take me so long I have only just read your post I also have a lot of pain in my feet from periphial neuropathy caused from the diabetes I am sorry I can not recommend anything as like your husband nothing really works now they are telling me that i also have arthritis in my foot as well so not only neuro pain arthric pain shoes every thing hurts I wish there where answers as it is frustrating all the shoes you buy are all going to hurt after a short while sorry i can't be of any help.

[joy]

[B]Hi Ging, I am sorry your husband has such pain. I will try and tell you about my Ididopathic Peripheral Neuropty. I have had it diagnosed since at least 1998. Not sure how long I've eally had it tho. I found a pair of mens Daniel Green houseshoes that were fur lined. I lived in those shoes. I rememberr always leaving home and buying a new pair of shoes at town only to have them hurt my feet as well
. They are dead now so I really have to be careful to have me not rub raw spots.
In fact we went on a camping trip and I stupidly put a compact and some eye drops in my shoes. Next orning without thinkig I put on those houseshoes and wore them until we were home from trip. Imagine when I took off those shoes, I had a very bloody toe where the compact had opened and the ponty top of the eyedrop bottle had gouged a hole in bog toe. So they were plent big on meas well, LOL. Might as well laugh cause noting helped anyway.

I use to always be gettin g some ind of injury of rash or something causng me to have to have months and months of therapy to cure something on my feet. So it is important to find some type of shoe to wear tp help prevent steppng on glass, nail whatever.

One thing I do think looking back is this, My neurologist had me on so many kinds of medicines at the same time. I have since learned that some medicines DO make my neuropathy worse. So I wish my doctor had gone slower. Also he never said stop this and start a new one So I was on at least six different meds at the same time for quite awhile. Now I take things slower and make sure to give each medicine time to show whether it will go against me or not. And I don't let doctor strong arm me otherwise.

I still am hoping to find the cause but realise I may never. My toenails on right foot are turning black and the big nail has fallen off. I have just learned I am low of oxygen and that I have two blood clots in my lungs. Don't have a clue how long that has been going on either. Surely not this whole time. My hands are hald dead, really hate that really hate.
I hope you have a fast recovery from surgery.

[Buttons2]

well I don't have PN but I will tell you what helps me for my arthritic feet (and I do have diabetes). I have worn nothing but Birkenstocks on my feet for many years. and I discovered Thor-Lo socks are the best ever for cushion. nobody with diabetes should ever go barefoot!one little sore can lead to surgery or amputation if you are not careful.

Joy, now if I had not come to this forum I wouldn't have known about your lung clots! good grief,what's next?I agree totally we have to keep on top of just what meds those doc's want to prescribe. always research the drugs,and I don't mean what the drug co. puts out for info.

[claref]

Pn and shoes

I am back after a few years....I have pn and rls so I have a hard time sleeping due to pain and or my legs moving all night. Anyway, I just wanted to say that the only shoes that I've worn for years are Rebocks. They are a soft leather and they give and sort of form to my feet. My feet are dead also, so I have to be careful ..around the house I wear simple canvas boat type shoe. I've been one a lot of meds over the years right now I take Lyrica and methadone at night. I hope your husband can find the right shoes for him!

[joy]

i agree about the rebocks being good. for me now tho it is merrills, the clog kind usually as my feet are totally dead and i also swell up on my legs so clogs type work. that way I can expect how each hits the ground, floor etc as soles are usually the same. keeps me from taking more spills as I still hate to always carry my cane.

[claref]

I stick with Rebocks, but when I get dressed up I have to improvise with lace up type shoes, or some kind of slipper that fits tight with elastic to hold them on. I cannot wear heels anymore, one of my feet is flat and kinda rolls over, so heels are out. Plus anything without laces or elastic flies off my feet. The muscles to hold on to the shoes don't work anymore. I also need a cane. I fell so many times, the last time I went face first into some concrete steps. That did it, doc said I have to use a cane. I hate it ,,,but I've had so many X-rays of my head I'm starting to worry about that.

[joy]

my doctor still does not truly have a clue as to how bad my extremities really are. If he was the doctor that had sent me to the foot doctor so many times he might have a clue. Fortunately once my feet died, i stopped doing many things which was getting me into all osrts of trouble. Fortunte was a bad choice, it means I mostly stay housebound. I use to get outside and wash out garage, work in yard etc and feet came into cntace with germs or whatever that would enter all the dry cracks etc.

So I never had a sense if shoes were rubbing feet either. I gave away even my prized Dexters etc casual shoes. all heels, even nice flats were out. now it is always big clunky wide boxy toe shoes ugly in a word for me.

I must remember what you said about the falls and think - do I really need to take the risk? You might have been a good reminder for me. I hated to try and keep up with it but already have taken to sticking small holder for cash, ID etc into a pocket to not carry a purse. It would be easier without the purse so timing might be right now.

I hated it when feet died but loathing plus can't even describe how I am feeling about hands dying now.

[claref]

Feet & shoes

I do get around as much as possible. But you reminded me of when my feet first started to go numb. My doc at the time said something about bunions?.. So I got a referral to a foot doc he knew right away my reactions were not normal. So I finally had an EMG. That showed all the nerve damage. Then I was able to get a referral to a neurologist. At one point my hands started to go numb too, but they seem to be a lot better now. I take a big dose of b12 everyday. The doc feels that helps to improve the pn and the rls. So it maybe what helped my hands. It's all a guessing game.

[joy]

I agree with the B12. sleepiness has caused me to slack off taking it like I should lately tho. I need to try and get back on it in a regular way. But I am as bad as any baby to get my sleep mixed up still it seems. Gotta keep trying to get it down tho. Wish there would be an amazing breakthrough that would help everyone regardless of the cause of their having neuropathy.

[Buttons2]

Claref,noticed you are new here. just wanted to welcome you to BT!