OK RFM pals! So, if you remember a few months ago, I started having tingly toes and was nervous to go to the dr. Ya'all convinced me that I needed to go. THANK YOU!!!

The pain has progressed to where it is severe nerve pain in my feet, the backs of my legs and the inner thigh. The docs have done MRIs and EMGs trying to find the cause. No such luck. They have declared today that there is nothing more they can do except to treat the pain. The technology is just not there to find the cause. They have me on Nortryptolene (sp) and the occasional percocet, but I am still in constant pain, just not as bad.

For those of you who have non-diabetic peripheral neuropathy and pain, is there anything that you have done which has helped? And, also what have you done that has made it worse? (I really don't want to do anything to make it worse.) Any personal experiences would be much appreciated. And, yes, I do understand that probably few to none of you are doctors, which is why I'm asking for personal stories. :)



Edited 1 time(s). Last edit at 04/03/2013 03:00PM by Good Witch.

Look into a condition called RSD. People with RSD have to cope with chronic pain and you may get some advice from them.

Of course, you'll get flak from people saying that's "not a real disease" so I hope it isn't that.

I'm really sorry to hear it has progressed! :(


Good thing the world of medicine doesn't rely on outdated modes of media to spread the latest word on advances.

If you want to know my story, ask Susan for my email. It's private because stupid people are just as insensitive whether they know pain or not. Told immediate responders and removed my email so it's not stored forever once the thread closes.



Edited 2 time(s). Last edit at 04/03/2013 06:13PM by WinksWinks.

The first thing to do is experiment. And realize that you are experimenting. Depending on the type of pain, and the "reason" for it depends on whether or not you should treat it with heat or cold.

Because you don't know, you should try one and then the other.

Heat is good for anything that is being restricted.

Cold is good for anything that should be restricted.

One will probably work better than the other, but you'll have to figure that out.

When people give you advice, you are going to have to experiment with that as the ONLY variable. And LOTS of people are going to give you advice. Most of which will be beyond useless. So, keep that in mind.

The other thing to understand is that chronic pain is very taxing on your mental state. What people without chronic pain DON'T understand is that after a while - it's not just pain anymore. It's torture.

They find that phrase to be "melodramatic" or whatever. But they aren't actually going through it - so ignore them.

You will HAVE to find ways to keep your mental state up. That's going to take time and experimentation as well.

Good luck, "Good Witch." This can be maddening. Keep your real friends close. Everyone else will leave you anyway.

"The other thing to understand is that chronic pain is very taxing on your mental state. What people without chronic pain DON'T understand is that after a while - it's not just pain anymore. It's torture."

So so true. And exhausting. Why is pain so much work?

BECAUSE IT FUCKING SUCKS!!!

It's pain. Most people do everything they possibly can to avoid even a shadow of it.

When it becomes your closest friend, you know you're fucked. And so does everyone else.

Some friend, huh?

"But you don't look like you're in pain!". Yes, I'd like to sport some symbolic compound fractures some days so people can look at me and say, "Oh, it's bad today, isn't it?"

You wish for that sexy name that makes everyone rally around you. The name that makes everyone run for you and wear pretty colored ribbons for you.

But you don't have cancer.

You don't have that sexy, vogue "c-word."

What's wrong with you?

Why aren't you up and out? You seem like a normal, healthy ____ ...so what the fuck is wrong with you?

Preaching to the choir, brother! In my darkest moments I wish the same fate upon the insensitive idiots that say such things, but take it all back when I get to a tolerable state for even half an hour.

When I had cancer I got treated like royalty. They showered me with pain meds I didn't even want. There was nothing someone wouldn't do for me. Cancer was a piece of cake compared to the chronic pain i've lived with for 20 years. People treat me like shit over the pain issue. Everyone from the Doctors to the neighbors treat me different.

Wrong spot Woops!



Edited 1 time(s). Last edit at 04/03/2013 05:22PM by WinksWinks.

I'm glad you've narrowed it down somewhat. I will be thinking about you :)

But I have found that yoga and pilates combined with light weightlifting has helped my sciatica in the last year. The pain is still there, but it's not as frequent. I absolutely must make sure to do the yoga stretches afterward a workout or the pain will come back with a vengence.



Edited 1 time(s). Last edit at 04/03/2013 04:44PM by Itzpapalotl.

Different drugs affect various parts of the nervous system. Narcotics help in the brain at the opiod receptors. Lyrica helps peripheral nerves, but is very expensive. Benzo's can help too, but are very problematic. But once you have chronic pain, the other problems don't seem as important :(

But with actual pain, you don't have to worry about addiction as much. As long as you don't medicate to the point of feeling good, you are usually OK. There should always be some pain left that can't be treated.

Have you tried a TENS unit? Acupuncture? Once you get on heavy duty drugs, you may be beyond the scope of those things.

Nerve pain is tough to treat, I'm really sorry you have this.

Don't let others push you past your limit. YOU will be the one that has to pay the price the next day or week.

Wear comfortable shoes. Say goodbye to the ones that aren't

If you take narcotic pain killers, don't tell anyone. They will either judge you, or steal them from you. Keep them where others wouldn't normally look. Keep them in a safe if you have one.

Be gentle with yourself. Save your money. There is no diet or supplement, or gadget that's going to fix this. If there was, people would be lined up for miles to get it. IT would be front page news.

Focus on the things that you can do. For me, it was time to learn how to paint. I've actually turned out some pretty good paintings. People have even given me money for them. Who knew?

Be aware that most chronic pain patients will eventually have to deal with depression. It's hard to lose the life you've always known. That's why focusing on what you CAN do is so important.

Get rid of the mean people in your life. They actually have no problem adding to your pain. Who needs it?

You may find that the people around you have a more difficult time dealing with your situation than you do. It's the cause of loss of friendships. That's a hard one to accept.

Try to only talk to your dr. about your problem. He's getting paid to listen. Others don't want to hear about it.

Nerve pain sucks you-fill-in-the-blank-with-the-grossest-thing-you-can-imagine. About 6 years ago I discovered I had a stenosis that pinches a nerve high up in my spine when I experienced the most terrifying pain of my life, had no use of my arm, and faced the prospect of risky surgery to scrape open the foramen. The pain eventually wore off but I spent a year doped up and with limited use of my arm and the whole thing could come back at any time. At some point I may have to decide on the surgery or just pain management.

I am currently experiencing a lesser sort of nerve pain that moves around my back/shoulder/ribs and have to go in this week to explore it further. I'm better prepared this time. Management for me now includes all and everything that works, mixing it up so I don't rely on just one thing. Drugs are a big part of that, and perhaps the most frustrating part because you constantly have to deal with skepticism and being treated like a junkie. Lorazepam, vicodin, naproxen, ganja, these all help in different ways and can be used without actually becoming a junkie, you just have to space them out so you have some on hand and can still get a refill on the prescriptions without being humiliated beyond your tolerance (you will still be humiliated and treated badly, but you want it to be as minimal as possible).

Massage, lots and lots of stretching and actual working out with weights, rolling on balls and foam tubes, movements of all kind seem to help me a lot. The pain is often worst when I am sitting, or reading, or laying in bed, and sometimes just walking (that really sucks as I do that all the time). Luckily the spouse has been to massage school and is pretty fantastic at it and always available and free:)

The whole interference thing works too, making sure that I'm actually concentrating on other things disperses the pain and puts it in the background, even though its still there. But to focus on it as the main thing on your mind will make you crazy, its just something to get used to and relegate firmly to the background. It is possible to adapt to a rather shocking amount of regular pain, but only with a sort of mindset that sternly places it as just among other sensory activations going on. Luckily, the body really does constantly get flooded with sensation and with meditation and concentration it does seem to be possible to focus on some of those other perceptions, which keeps pain it a manageable place.

It really does seem to be very individual, so just be patient with yourself as you work out a mangement strategy that is flexible and adaptive and allows for the rest of your life. And sometimes it also just helps to cry about it because it really sucks like almost nothing else. Good luck:)

What luck to have a live in masseuse! Envy! :)

Remind me to show you my first rib release maneuver... We may have similar pain source issues, the wandering shoulder/ribs/back pain thing sounds very familiar.

Very wise to mix things up like you say.

Neurontin (Gabapentin). A low dose over a one month period completely stopped severe nerve pain from a herniated disk in my neck.

I couldn't raise my arm at one point; can't even tell it happened today one year later.

Best wishes to you. Chronic pain sucks, but don't give up, you'll figure out what works for you.

Two drugs that may help you should talk with your doctor

1. Gabapentin
2. Lyrica (pregabelin)

They are not narcotic and influence how nerve cells send signals controling the sensitivity of certain ion channels.
They don't work for about 2/3 of people with neuropathy and they may make you drowsy or give you poor balance.

How much do you weigh? If your BMI is over 25 lose weight. Exercise as much as you can, walking, swimming, kayaking. Look into massage and yoga, and stretching.

Find a doctor at a University hospital who specializes in neuropathy.

You try the yoga. You try the massage, you try the accupuncture (more than 1 type) you try the over the counter and under the counter on line remedies, you try the socks, you try hypnosis, you try selfhypnosis, You try the gabapentin, you try the lyrica, you try the butrans, you try the fentynal, you try the codeiene, the morphine, you try everything else ,except Dr. Oz's warm socks, which you can or can't feel. And then there are the cortisone paches, the cortisone shots and then at long last you get to the spinal chord stimulator implant. And you don't live in any state which restricts the use of narcotics, like Washington, because then in order to get any pain relief, you have to get it illegally off the street UNLESS you want methodone. No one will understand because you try to do what you do but then you have the severe depression that goes with the chronic pain. You go to pain management.

I have non diabetic neuropathy in my feet and calves. I also have herniated discs in my back and neck. This nerve pain in my feet has made the other stuff feel like nothing.

I too have tried many things. I use gabapentin. Watch my soda intake. and found b-100 supplements magnesium, calcium, b-12 to help. But not cure.

I also tried Cymbalta which pretty much stopped it, but my adrenals wouldnt handle the N part of the SNRI. I am working on my adrenals so I can go back on the cymbalta. Narcotics and gabapentin together didn't work as well as this drug.

I think it goes generic the end of the year cause it is hideously expensive.

Also I really stretch out my calves right when I get in bed.
But nothing always works.

I am going on 6 years like this. And yes Mia have lost most of my friends and siblings. I hate that they don't understand, but still don;t wish this on anyone.

Try to get in pain management. And as others have said keep any negative people out of your life, sleep is so important. My doc said don't care how you get sleep, just do it. And guard it. Meaning make it very important.

Good luck and in hope yours is temporary and goes away.

Yes, sleep is extremely important. Ambien, Lunesta. My sister recently had nerve pain. She said she didn't understand what I was going through until she got damaged nerves like popolvuh. She said there is no pain in the world like neuropathy, even shingles, but that her's is supposed to go away after 1 year. If it is under a year is is temproary nerve damage. She was warned before the surgery about the pain. How your activities are limited. And then your doctor moves your medicines around. The best thing for it is to find yourself a survivors group online in your area.
But you have to remember that sometimes really DOES go away. Its a new science and there are new things all the time.
What else...you are in the earlier stages: chamomile tea. Definitely limited exercise and walking. Diet/Weight surgery. Service animals. You DON'T get yourself into bad or anxious moods. If you do, it flares up like crazy. Water exercise. Physical therapy and tens (woot had them for $20). All the B vitamins and calcium is extremely important.
Tingling toes is L5-S1 on your back, of course they have done a CAT scan of the area which will tell if there is nerve damage. It could just be that you pinched a back nerve and the nerve is in a bad mood right now and it will go away.
Just for fun, I know we use all kind of medicine names but you tell people instead that you are on large doses of morphine (which is less than some of these meds) suddenly they have understanding and great sympathy in their eyes because they know what morphine is. :-)

You need to go back and inquire about RSD (Reflex sympathetic dystrophy), aka Chronic Regional Pain Syndrome. My sweet 9yr old daughter has this disease and it causes severe chronic pain.

Thank you EVERYONE for your comments and suggestions. I'm going to try all of them one at a time. And, thank you so much for telling me your experiences and warning me of what is to come. I REALLY appreciate it. It will really help me in terms of dealing with other people. If only the Morgbots in your lives could see you as you really are. Caring, helpful, generous individuals.

H e i d i G W O T R

My best advice is to always keep looking for answers. My chronic pain (including nerve pain) is vastly better with lifestyle changes. I eat very cleanly (medically prescribed diet-no grains, very low sugar, nutrient dense), changed to a lower-stress career, exercise, sleep. I found myself a fantastic osteopathic doctor and we work together to fix the root of the issue.

I know this might sound crazy, but do more things that make you calm and happy. My physical therapist loaned me a great book called "explain pain". It pretty much says that once your body produces chronic pain, pain receptors become heightened - part of your cells as they duplicate actually create more sensitive cells. So, you need to train your body to "remember" what it's like to be without pain any way you can. Exercise, meditation, surrounding yourself with laughter (even when you don't feel like it) will all help. Even if you go the route of finding a prescription that works, this is very important! Good luck.

shoot your mother-in-law

She's already dead! ;)