Hi folks!

I was diagnosed with mild Idiopathic PN about six years ago and have only ever had very mild symptoms - tingling, zaps and some weakness in feet and hands. I have been on just 600mg Gabapentin for about four years and this has worked well for me. I have had a couple of years with really no symptoms other than tingling.

I had a number of nerve conduction studies which showed no increase in nerve damage over a few years. It has been about three years since my last one. I recently moved interstate and have been awaiting an appointment with a new specialist.

A few weeks ago I had a bad tooth infection and some reaction to one of the antibiotics I was on. This has now resolved but I am finding that my PN is starting to flare for the first time in years. My legs are sore and burning and I'm tired. At the same time I feel anxious and worried and have been feeling very stressed. My GP also told me my Vitamin D levels were very low and I needed a supplement.

I'm just wondering if anyone else has had the experience of a sudden flare-up after a long period of no real trouble?

Thanks for your thoughts.

Some drugs trigger PN in some people.

Here is a link for that:

http://neurotalk.psychcentral.com/thread122889.html

If you are using the RX version of D which is old and comes from plants ..called D2, be aware that this form has been shown recently to not work reliably. You will want to use D3 which is only OTC. Do you know your numerical result? Figuring out the dose depends on your test results.

Hi Andy, Welcome.

I'm kind of going through one right now, which I'm trying to figure out. It may be some kind of food trigger I got into.

For the burning pain, I learned about R-Lipoic Acid (and now a stabilized form, but I haven't noticed any difference) on this group. Since taking it (100 mg./day), I've not needed gabapentin or any other prescription for PN. It's been about a year & a half. I'm also taking D3, methyl B12, B5, and a few other supplements. My PN was regressing for a time before this flair. It hasn't progressed any further up my legs, but where it's always been in my feet, it seems to be getting worse of late. I have to stay on top of the edema with massage (pressing it out) every few days.

Doc

Thanks for your feedback Mrs D and Dr Smith.

I am taking D3 and B12 and will start Lipoic Acid today. Is there a dosage you recommend to start with? How soon did you feel benefits from it?

I have read a bit about taking magnesium supplements - is this something that can be helpful?

In a good bit of news I was going to be waiting til 18 Aug to see a new neuro, but they rang this morning and offered me an appt for tomorrow, so that's something good!

Lipoic acid dosage depends on which form you use.

If you use the new stabilized NaRALA you only need 100mg a day.
Take on an empty stomach. (Doctor's Best is one brand)

If you use the old original ALA alpha lipoic acid, you will need at least 600mg a day, and maybe more. This form is less reliably absorbed, and requires higher dosing. And it needs empty stomach also.

And yes, magnesium helps alot. Don't use magnesium OXIDE as it does not get absorbed into the blood stream and remains in the bowel and acts as a laxative. Aim at 1/2 the RDA to start.

R-Lipoic acid as MrsD recommends. I felt results (no more burning) very quickly (days) but I'm an unusual case. If you don't get results within 8 weeks/60 days, you likely won't.

Doc

I experienced a sudden flare-up a few months ago. I normally have pain in my legs and feet, weakness, balance issue, etc. but his was a body wide burning feeling, like a really bad sunburn. My clothes were unbearably painful, sitting, everything burned. I first suspected my meds, so we changed a few things with no effect. A few weeks into his I developed the biggest, ugliest cold sore I ever had, and it took weeks to heal. It wasn't as painful as I remember them being, but gabapentin is very effective for post-herpetic neuralgia, so dampened the pain.
It now seems likely that a shingles type virus was responsible for the burning. Once the blister broke out the symptoms gradually lessened, and I am back to my normal level of skin sensitivity, which is still elevated, but tolerable.
My doctor has given me a prescription for an acyclovir type medication to take immediately if the symptoms return, or I develop another cold sore. If a virus can cause a flare, I would guess an infection could as well.

Absolutely. Viruses, infections, bacteria, inflammation, and any kind of stress... Just about anything that can alter body chemistry can cause pain flares of all kinds.

Susanne, have you ever tried an antihistamine for those body-wide burning flares? Epsom salts or baking soda bath?

Doc

Yes, Mrs. D suggested Benadryl. It helped me sleep when the burning was at it's worst, which was a big help.

This may be a bit off the regular magnesium useage; but have terrible constipation due to narcotic meds. Also, had Rectocele surgery. Doctor told me even if I have to take a laxative daily; be sure not to get constipated because Rectocele could easily return.

In order to keep from getting constipated, I have had to take at least 2, sometimes 3 tablespoons of Milk of Magnesia every evening. I would guess this plays a big part whether or not I am depleting magnesium. I had ordered a supplement; but, things were looser and so I stopped the supplement. Really confused regarding to supplement or not???? Would appreciate your thoughts on this.

(Gerry)