I'm new to the forum and am interested in how people cope w/ unremitting and constant pain from PN, particularly the freezing cold toes and feet. I've had the problem for >1year and I've been to Johns Hopkins and UPenn and have diagnoses for idiopathic or prediabetic painful axonal neuropathy but I'm told the symptomatic treatment is the same. For me, Neurontin, Lyrica, Tegretol, Ultracet, and Vicodin, alone or combos are not helpful.
Any suggestions would be welcome!!

Alkymst,

Welcome. I hope you find help here, and then pass on what you learn and what helps you.

If I had to pick one thing that was and is most effective in my multiprong approach, it's the Rebuilder ( www.rebuildermedical.com ), which has worked like a miracle for me and many others in this and the old BrainTalk forum. If you get it, follow instructions, especially don't set the stimulation too high. I used it twice a day for two weeks, then once a day. Now I use it once or twice a week. It reduces all pain and numbness, but especially the excruciating "electric shock" type pains.

If you google "peripheral neuropathy electric stimulation" ( http://www.google.com/search?q=perip...en-US:official ) you'll find a lot on the subject. My unit has been in use for about 8 years now. It takes a lickin and keeps on tickin. A TENS unit or Interferance unit might work just as well, I couldn't say. Mainly, people have used the Rebuilder. The old precrash BrainTalk board had many, many postings on the subject.

Familiarize yourself with the "Sticky: Important Links/stickies" for many more ideas. There are no magic pills for this. You're on the start of a long journey of discovery. The "Sticky" section is the best place to start. First browse the titles across all pages, and then start reading the most applicable postings.

I should mention that what, if anything, helps may depend on correcting the cause of your neuropathy. For example, if you're alcoholic and have resulting peripheral artery disease causing the neuropathy, you wouldn't get much relief until and unless you stop drinking. The more you let us know regarding what, if any, testing you've had, and specific results and diagnoses, the better our feedback to you will be. Also, any other significant factor like smoking, obesity, HIV, hypothyrodism, drugs you are taking besides the ones you mentioned, drugs you took before the onset of your neuropathy (many drugs can cause neuropathy), etc, can help us point out areas for you to explore. We have a lot of expertise here, including professional, but we need to know a lot more about you.

Alkymst;

I am so sorry that you have contracted this horrible condition. I have had painful PN for several years now and understand your concerns. It is one of the most difficult conditions to manage pain for.

I have not experienced The Rebuilder because of the cost, but my pain is at the point where I cannot afford not to have it. I am on methadone and percocet for breakthrough pain but still experience too much pain.
So, coincidentally, (David, you will love this.) my very wonderful, husband told me today that we are not waiting any longer. So tomorrow we'll call the order in.
I'm so hopeful.

nancyh

Just curious but did any of you guys check the thread I titled "check this out". It has this gadget called a Reflex Roller. Alan tried it out.

It was delicious on his feet and made his pain go away.

mel

Thanks for such a prompt and detailed reply!! I'm sorry that you've had neuropathy for so long. I've read about the Rebuilder and will look into it. I'll try to answer your questions.
I really don't drink but this bloody condition gives me pause to reflect about starting a long term relationship w/ Jack Daniels.
As for tests, I've had every conceivable blood test which ruled out hereditary and chemical causes, although I am a process chemist and have had chronic exposure for >30yrs. HIV, Lyme's disease, CIDP, Sjogren's syndrome, heavy metals, vitamin deficiencies, amyloidosis, cancer, and meds have all been eliminated too. I've been through NCV's and EMG's twice each of which show a mild, mixed but painful sensorimotor neuropothy, predominately small fiber.
I am prediabetic and overweight but I'm working on that now - although it's difficult when every step causes pain. I forgot to include that the tendons and muscles in my feet and toes have shortened to give me hammertoes, claw toes and the big toes are being pulled out of alignment. I take synthroid (>10yr) for Hasimoto's thyroiditis, and micardis for HTN, controlled for many years and an aspirin/day, ~25yrs.
I stopped smoking 30 yr ago - an MI in graduate school will do that to you. That's a pretty concise description of where I am right now.
Thanks again for your reply.

Thank you for your comments - I'm glad you will have a chance to get a Rebuilder and I hope it brings you as much relief as it David described.
Good luck - it's nice that the first 2 replies to my post both suggest the same treatment.

Melody;

It sounds absolutely wonderful but my feet are so painful, anything that puts pressure on them, even massage, is a no go. I use some cream on my feet to keep them from drying out (I live in the desert) and I have to be careful how hard I press when I apply it.
Shoes? Well, let's just say they are a problem. It really is a pain in the rear . . .or feet. . .whatever, I'm having a bad day.

nancyh

No I hadn't looked at the "check this out" thread but I will. I'm glad it helped your husband but what kind of pain did he have - burning, cold, sharp, pins and needles?
Thanks for your suggestion

Alan has had idiopathic pn for 18 years. He has numbness in his toes (you could drive a nail right through them he wouldn't feel it. That's why he had to stop driving 6 years ago.

But the pain is pins and needles and stabbing. It comes and goes and the only thing in the past that relieved his pain was the fenantyl patch. He was on it for over a year, but when he went to Dr. Theirl, his chiropractic/neurologist, he gave him adjustments and Alan got so much better he went off the patch (he had to detox but he did it). So he has not had so much as a vicodin since then.

He has tried neurontin (made him hill), he tried lyrica), too much fluid retention.

Actually the only time when all the pain goes away is when I massage his lower calves and his upper thighs. He is in heaven.

That's why when he sat in the chair at the mall and they showed him the Reflex Roller, well, he said "oh my god, all the pain is gone".

I just wanted to share it with you all.

Melody

Hi Alkymst--Welcome to our club. We're a good group here, with people who have amassed an awful lot of good information. It seems you've had a great work-up at Hopkins, and know what your risk factors are. But you could always check through the stickies and familiarize yourself with the basic body of knowledge.

The most important thing to remember, I believe, is that peripheral nerves regenerate if they are put into a more healthy environment than the one that injured them. That means good nutrition, exercise, supplements which aid neuronal growth and decrease inflammatory damage. Several of us here, including me, are way way better than we were at the time we were diagnosed.

I've put together a website which helps track all the tests we've had, and figure out if anything is missing from our workup. It's at www.lizajane.org.

Wings has posted incredibly helpful stuff on diet, supplements and, I think, exercise.

I think you'll find a lot of support here for helping yourself get healthier and undo the damage that has been done.

Good luck.