Neuropathy--you too? Can we talk?

[blondeatlast]

I'm still relatively new to this but at this very moment (Oct. 12th, 2007--2:30 BLOODY AM in my time zone) I'm in a horrible state, unable to sleep.

I feel as if I'm being pricked by a thousand needles and every once in a while, a freaking knife stab.

I'm on Lyrica and it's helped a great deal, I'm just having a particularly bad time of it.

How do others cope? I've never experienced it quite so badly before and it's not doing a damn thing good for my attitude.

Hubby and son are sleeping soundly and frankly, I have to fight the urge to resent that they can.

:mad: :(

(Pitifully) HELP!

[siligut]

1. Not "me too" but. . .

I don't know your individual case, but neuropathy plagues people with diabetes, nerve problems and those on some forms of chemo. I understand it can be very painful. I talk with people with DM mostly and have been told about a few things, other than Rx meds that help. One woman used pure lavender oil to massage on her legs each night, it is a tissue regenerater, but be careful using it undiluted, though I do for other skin worries and have no problem. Make sure you are getting your B Vits, esp B1, Thiamine. Look into Anodyne therapy, it uses light and I have had several people rave about it, you can get it from a physical therapist. If it is related to DM, keep your BG under control as much as possible. Good luck. Hope you are sleeping better now.

[Irishonly]

2. I have neuropathy

My neuropathy started when I was in cancer treatment and has never gone away. There has been some success with Cymbalta. It's an antidepressant but it's being used for people in chronic pain. When I was first diagnosed the drug of choice was neurontin which is used to treat epilepsy. I have never known anyone that it helped.

Do you have the neuropathy in just your feet or is it in all of your extremities? My pn first started in my hands and I have learned to adapt cooking utensils as to not aggravate it. I used to have to take elavil at night but my duragesic patch has been increased and I actually a, taking less medication.

The lavender can help but you have to be careful. There is a Neuropathy Association. You may want to contact them and see if there is a local chapter near you. You can also try to find some support groups online. My pain is severe and I have gone up the ladder with medications.

Good luck.

[Lurking Dem]

3. I've had diabetic neuropathy for 16 years.

First off *very gentle hugs*.

I ended up doing morphine sulfate because nothing else worked but THEN I found some stuff that did!

One DUer (this was a few years ago and I don't remember who it was) mentioned that they had MS nad had some of the same horrible cramping I was experiencing because people with MS didn't process potassium correctly. I've been taking a potassium supplement every night at bedtime ever since and it relieved 90% of the muscle cramping and spasms.

The "electrical" type pains - burning, pricklies, etc. you have to get down to a level that it becomes something like a background annoyance instead of a nightmare. For me, capsaicin cream worked for awhile. (Do NOT get it on your hands and then touch anything!) but the biggest help has been acupuncture. I've gone completely off the opiates with twice a week treatment. Some insurance will cover part of it some won't. Topical herbs from my Chinese doc have also been marvelous.

The deeper bone-type pain is still an issue but not nearly as bad as it used to be. I used to wake up screaming for my husband to cut off my legs. I would dream they were being slowly flattened by a steam roller. The acupuncture helped that a lot and I don't have those dreams anymore but there is still residual pain - I've just learned to live with it.

The most important thing to remember is to get pain relief and get on top of it. You really need some kind of pain management team. Your body's reaction to the pain will damage your adrenals and all kinds of other body functions so get relief first and then start trying alternate methods.

For those times it is overwhelming and keeping you up, I find DU to be a great distraction. :) Getting po'd at Rush Limbaugh is so much more enjoyable than physical agony. Writing about your ordeal - either creatively or journaling - can also be helpful. I actually had a poem about neuropathy published in a doctor's magazine and they had never done anything like that before!

[siligut]

4. Gabapentin

There is also Gabapentin, originally used to treat epilepsy and convulsion disorders, now approved for tx of nerve pain. I hear it works well but you need an rx to get it in the US. Potassium supplements can help with cramps and restless leg syndrome, be careful (get labs drawn first) if you have any sort of kidney impairment though, Potassium can build up and cause problems.

[Lurking Dem]

5. You're right about the potassium.

Also ask the doc if you have heart issues or take diuretics. Good catch!

I was leery of trying the gabapentin because I had such an awful time with the neurontin and they seem similar in action. The seratonin reuptakes almost killed me. Oddly enough, I can function well on the morphine but it makes me wired.

Another thing often unconsidered with neuropathy is alcohol consumption. If my neuropathy is bad even a single glass of wine makes it exponentially worse.

[kittykitty]

6. Gabapentin is generic Neurontin. They are the same drug.

I have MS and take gabapentin for pain. I can't say that it does anything much, though.