[Steff]

so let me understand this-joe, you broke your toe because you could not feel, and you can walk by the ocean. (sorry about your break joe-i broke my ankle in nov and i diffInately felt it for 4 months of pain)
But you are not in so much pain that it stops you?
so are most of you not in pain? or at a level that you can function?
I cannot walk to the bathroom without burning pain. after 5 minutes it is tight like a vice and then am stabbing all the way up my groin.
that is what i mean that i do not think i belong in this group because i think my neurapathy is not well defined. i need a wheelchair-does it get that bad for some of you?
i dont know what therapy or doc to try next without going broke or being so drugged i cant see straight.
and i am bored and lonely and i've been surfing this site over and over like a looney. sorry i've had it
steff

[glenntaj]

Many of us have considerable pain--burning, stabbing, electrical, you name it (and nerve pain is hard to describe to those who haven't experienced it)--but not all nerve damage leads to pain. Some results in numbness, some in the dimunition of positional sense or balance, some in inability to move muscles (motor neuron damage); it depends on which nerves are attacked, and by what agent. (I locally know of people with neuropathy who have no disruptions in sensation, but have motor neuropathies--they have trouble moving, fall, drop things due to difficulty in gripping.)

The symptoms can be so varied--and can overlap with those caused by central nervous system damage, as opposed to peripheral--that it's no wonder so many of us have to go through such expensive and lengthy investigations to find the causes of our symptoms--IF these causes can be found.

[Silverlady]

Steff,
I think all of us are in pain. It is just different levels of pain. Some of us have been lucky enough to find something to take for the pain. Some of us live with it but maybe not well.

I just got out of the hospital. I had spontaneous stress fractures in my sacrum. (that's the bottom of the spinal area). I was in horrible pain. And most of it was neuropathic pain. Some from the breaks but a lot of it was because my sacrum is fractured accross the level of the spine that is called S-3. That's the S-3 vertebra. I also have small fiber sensory neuropathy. It's much worse in one leg than it is in the other one. I limp 24-7. It is difficult to follow conversation because of the level of pain. I also have difficulty standing because of the pain. Like you it gets to where it feels like a vise in my legs and it feels as if someone is crushing my spine from the top down. But I refuse to go to a wheelchair. I keep pushing. Sitting down frequently.

When I go out, I am careful to be sure that I've only parked a few feet from where I'm going and a trip to the grocery store or any other large place requires a motorized scooter. My life is very limited. But..

I've found ways around things to keep living my life. Is it easy?...NO..but the alternative is that I give up what I call a "normal" life.

I wish I could tell you what the answer is. But all I can recommend is that you find a neurologist who specializes in neuropathy. And find a good pain clinic. I wish you luck.

Billye

[darlindeb25]

Well, I can't answer for Joe, but I can tell about my neuropathy. I do not have the numbness so much anymore. When I first moved to Long Island almost 3 yrs ago, I would walk the beach every Friday, even in winter. Now, I can't walk it in the cold, can't even walk it much anymore. I used to go to the Great South Bay and walk and walk, then realize I had no idea how I was going to get back to the car. My right foot would be hurting so bad and then my left hip would kick in it's 2 cents worth and each time I went, I would wonder why I always wandered so far. This summer, I found just getting to the water's edge at the ocean seemed more than I could handle and getting back to the car was . There has been so much beach erosion here this year and it seems like such an uphill climb back to the car. Then, also, of course, I always want to be barefoot, which , yes, I know I shouldn't do. Now, the sand hurts my feet. They feel like they are on fire--now I actually know what people mean when they say their feet burn. It's not the heat of the sand, it's my feet. I keep trying, painful as it is, it is still the most beautiful place on earth and I can't imagine not being able to be there.

[HeyJoe]

Let me see if i can explain this. My feet are now totally numb, you can stick a pin in them and i wont feel it......but when i stand up or walk it feels like i am walking on broken bones, previous to total numbness, if i walked on a pebble it felt like a boulder....right now i still feel it if i step on something like rocks or shells...a dead kind of a pain feeling which makes me lose my balance. a lot of times its a delayed pain...i step, i dont feel pain, a few seconds later an exaggerated pain comes. So at the beach i wear sneakers that are made out of mesh. I used to get a lot more pains, such as burning , ice pick stabs, jolts, throbbing, but interferential and tens therapy as well as vitamin b1 and wellbutrin have lessened those greatly

as far as walking every step i take is painful, as i said like walking on broken bones, but i do it anyway....i wont give in, there are so many things that i like to do that i had to give up that there is no way that im not walking and taking walks with the dog. i try not to stand in one place but to keep moving as a general rule. i hope i made it a little clearer what i meant.

[shiney sue]

Clinic day fo me. As every one is telling you in different ways,we are all
Different,honey. PN some say 200 different ways,others 300 ways.
Example years ago,i can not give you when I started aching,in my feet,
than tinging,(not painfull) just annoying,on to burning,horrible pain,
restlessness,cramps,spams more. I can not give you a date seems like
yesterday,or years ago. Then nothing from knees down, walker and thighs
kept me on my feet and alowed me to walk a short distant. It's what they
call a platform walker it's heavy,you put your hands thought it. I have fallen
on the floor,and off the side of bed,out of bed.Just so much more.

Then it started so bad in my hands to elbows to neck across the shoulder,
I cry,i scream,i throw up,i can't eat,then i eat to much. It sometimes
sucks the life out off me,i spend more money on it then i have. I am on
Medicare,medicaid..Our war cost so much,one Dr. said today they those
who get sick with this and other rotten diseases,those who need it the
most are being cut,more and more..The special socks for my legs are
no longer insured,so 1 pair costs 400 hundrend dollars. Yet until the
awfull ulers or burns,until they heal cost nothing, there changed eveyweek
and throw away cost me nothing.. And those numb legs believe me feel
like third degree burns,and it's been 111 degrees heat well i hurt,don't
want to hurt this bad again but i will..

You must get to a Neurologist and go through all and any tests the give
you,because we re all different..I sound angry,i'm not but you are going
to have to do this. Sue Oh then you must ajust to meds,and we are
all different with that to.

[Steff]

i wish i could heal everybody-
i knew i was in pain the last 23 years before i got those shots-i kept going too and the pain could get bad, but i never knew that there were so many other people in so much pain.
i hurts me to see the hurt.
i am going to see another doc for antoher ideas either this week or the next.
i can feel all my bones too, and all the neveres and well you know, it just is too much this time. plus they made a growth in my ankle that is like a rock with every step.
what bothers me the most is that i chose to do it without asking someone else-i did it to myself and i cannot forgive myself because i could have lived at a level 5 paiin the rest of my life, but i was getting gready.
i do need some relief.
thanks for all the support and any more ideas are great.
steff

[fanfaire]

I am somewhat fortunate in that my neuropathy seems to be episodic. It has calmed somewhat in the past two years since I had to stop working, but I am definitely not symptom-free. I refer to my neuropathy sometimes as "the parade of sensations".

It is worst when I'm having an acute exacerbation of my Sjogren's syndrome. That's when I'll get the stocking and glove stuff, numb from the knees down and from the elbows down. So far, I've only experienced complete numbness three times that lasted long enough for me to actually see a neurologist while it was happening.

It's more common for me to get partial numbness in a limb. It usually wears off without treatment. Sometimes I am not aware of it until it is pointed out to me in an exam.

The most consistent sensation is burning in my feet, especially when I first get up for the day. You know when you have a body part that's trying to wake up when it has fallen asleep? That's what it feels like.

The most embarrassing sensation is the intense stabbing pain, like being struck by lightning. Embarrassing because it's so sudden and so painful that I will actually gasp or scream, startling whomever happens to be nearby. Thank goodness the pain isn't continuous.

So I guess what I'm trying to say is that it varies a great deal.

fanfaire

[gerrym]

Hi to everyone

Hate to jump in here late, but I just noticed Silver Lady's earlier post to Steff, and found it very interesting ... because the following excerpt looks like something that I would have posted about my own condition. How close our symptoms and conditions seem to be.

"It's much worse in one leg than it is in the other one. I limp 24-7. It is difficult to follow conversation because of the level of pain. I also have difficulty standing because of the pain. Like you it gets to where it feels like a vise in my legs and it feels as if someone is crushing my spine from the top down. But I refuse to go to a wheelchair. I keep pushing. Sitting down frequently."

Anyway, you mentioned that you have to sit down frequently. And I wondered If that's because you're tired, or because the pain is greatly reduced, when you're off your feet?

I learned from a neuro doc yesterday that because my pain lessens greatly while sitting, (for other reasons too), that it wasn't PN, per se ... and that my pain and discomfort were emanating from pinched nerves in the L4- L5- S1 area of my lower spine ... which he called it Compressive Neuropathy.

In an attempt to shorten this ... he'll need to review the latest MRI films, but felt reasonably sure he could surgically open and repair this area and free the nerves ... and I would be relatively pain free. And maybe, just maybe, be able to walk again!

I'm trying hard not to consider this a done deal quite yet, because a lot could happen, and there have been so many disappointments in the past ... but at the very least, there is some reason for optimism.

I know all of you have been involved with PN and this board, for a much longer time than I, and this is probably redundantcy from a newbie, but I thought I'd pass this on, just in case it might help someone. The other reason for my post, is that I am so happy with the news ... that I just had to share it with somebody.

Thanks

Gerry

[Silverlady]

I appreciate your post. No one has ever called this compressive neuropathy. And you are right when you say the pain is reduced greatly when I'm off my feet. I have degenerative spinal disease caused from rheumatoid arthritis. There are many places where my spinal cord is compressed. But no one has mentioned surgery to me. My rheumatologist said it was not operatable. So I've never pursued it. And my bones are so fragile right now from the osteoporosis that I'm not sure any one would touch it.

I am so glad you are excited. But be very sure about what you are doing. Surgery can help in some cases, my husband just had surgery for a blockage and a cyst in his spine. It turned out well. But I also know people who are in worse shape after surgery on their back.

Billye