I've been fighting it. I can't sleep. The neuropathy has now spread throughout my whole body. The pulsing pains had me up since 3 am and I am so sick of it. My feet hurt so much to walk on them today and if I lie down the pain shoots all around with random twitches everywhere and buzzing. I am exhausted.

In the beginning (September) when this thing attacked me, I took the drugs prescribed because at that point they thought it was just herniated discs, so I wasn't afraid to take drugs (oxcodone for pain and valium for spasms) for such a limited time. I was told 2-6 weeks for healing. Then the neuros all said- no this is not herniated discs, its something autoimmune going after your spinal cord....blah blah blah. Throughout the course of different doctors for 2 months and without a diagnosis, there was still the chance in my mind that this was herniated cervical discs and that I'd make a recovery. I am so anti medication that it upsets me to even take an ibuprofen let alone narcotics or longterm drugs.

Anyway sorry this is taking so long.

I was told by one rheumatologist that while whatever is wrong is healing I should try cymbalta. I did and it kept me up all night and gave me crazy diarrhea (sorry). Then flexeril and zanaflex. That did nothing for the spasms and made my already low blood pressure frighteningly worse. Then baclofen. That did nothing but make tired and grouchy. Then tramadol and that made me jittery all night with NO pain relief and worsening of spasms.
One doctor wanted me to try nortriptylene, but my new neuro said it would probably give me side effects.

Have you thought about naturopathy, acupuncture, chiropractic?
If MDs can't help much, I'd think about trying some alternative care.

They are usually hesitant about prescribing narcotic pains meds until AFTER you have tried everything else (Cymbalta, Neurontin, Lyrica, Lamictal, etc...the list goes on and on).

If they have concluded the findings as to the cause (autoimmune), then they should be considering IVIG as well.

You should also consider some of the supplements MrsD suggests...can't hurt to try. BUt what ever you try, do so one thing at a time otherwise you won't know what is helping or what is giving you side-effects.

Jomar,
I have tried all natural approaches to no avail, although my holistic lifestyle is what I believe is keeping me alive. Before this happened to me (it's almost 6 months now) I was a practicing holistic health counselor... the picture of health! Now I feel like a living advertisement: Hey! Look what healthy living does to you. I'm so sarcastic. If I don't laugh, I'll cry. I still do believe I'm going to overcome this BS though. Am I delusional?

The thing is, they say yes it is probably autoimmune, but due to the amount of autoimmune antibodies that don't have test yet, they can't find it so it doesn't qualify for IVIG??? They also say it could have been triggered by a virus and throw their hands up and offer symptom drugs.

Yes I take all of the supplements effective for nerve health/repair and then some. At least it makes me feel proactive in some way.

Is medical marijuana an option where you live?

Aloha... I just found this site tonight and learning my way around. I have suffered from PN for over 20yrs and do not want to do Rx's. It is getting worse as I age. Been to many Dr's... and the only real relief I had was from Capsazin and I do like soaking my feet too. Well... I have taken Valerian Root for many years as a calmative at night for sleep and then I saw it suggested for nerve pain... I had never tried it during the day as I didn't want to get drowsy. I took one capsule in the am and WOW did it work. Brought the tingling and pain down within 15min. I have been taking it for over a week now... PRN, as needed with my feet start to bark at me.... no drowsiness. I also am trying Benfothiamine with the ALA. It is a fat based B vitamin. Hope that help too. After all these years of suffering in silence I finally have hope...PS... lucky I live in Hawaii as I hate shoes... or they hate me

Welcome Malia.

Thank you Kitt ...

Lots of people here hoping you get relief. I will throw in my 2 cents. Pain can drive a person to depression, if that is happening GO to pain mngmnt. Sleep is necessary for improvement even if it means taking yet another pill. Life has to be tolerable, you can withdraw later on. Good Luck, Ken in Texas.