New member with a question
 

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,
 

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.

Mrs. D,
 

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)

Not related to magnesium, but I had similar advice from a gastroenterologist, never to get constipated. I have found miralax works exceptionally well.

Milk of magnesia contains magnesium hydroxide. This form is not water soluble and very little if any gets to the blood stream, so it is not a good source of magnesium for the body. Its main use is for laxative effects.

Some oral supplements do help with laxation as a side effect.
Magnesium citrate is one. This one can be used in small doses as a supplement and in larger doses as a laxative.
Typically it is not recommended for laxative use anymore because of the potential for overdosage of the magnesium.
Fleets PhosphoSoda was taken off the market because of this.

Susanne
 

Used Miralax for over a year; but more like ribbons and very loose. The Phillips, the at least is not like ribbon and not as crampy. So I went to the Phillips.

Mrs. D.
 

If I understand correctly, the Phillips is hydroxide and very little, if any, gets in bloodstream. You also mentioned to not used Oxide because this acts as a laxative and magnesium citrate can cause overdose of magnesium. I do use furosemide (lasix) daily for my edema. Had purchased the Chelated Magnesium but stopped using this because things seem very loose and would appear this means taking too much.

Not sure whether to take the Chelated Magnesium or not. I would assume the Chelated would get into the bloodstream; but if very loose when taking; am I correct to stop the Chelated Magnesium. Currently do take the R-Lipoic 100mg., MethyCobalamin B12 (1-2 mg's daily) and Benfotiamine 300mg's twice a day.

Really appreciate all you do for this site. Hope you enjoy your well-deserved vacation...you will be missed !!!

(Gerry)

Not all the chelated is absorbed either. Like calcium, magnesium is not 100% absorbed in each dose.

I seem to not tolerate oral supplements well, except for SlowMag, but even that one affects me sometimes. I guess it is the fast transit time I have due to my twisted intestines I was born with.

I am liking the lotion alot. If I don't use it one night I sleep differently! I apply it on each wrist and inner arm, about a nickel to quarter sized dollop and rub in well and my hands get some.
It has really worked wonderfully for me. Still using my CVS Epsom lotion that I snarfed up extra when it was discontinued.

Another thing that is working well for me is high dose Biotin. I am now in my second month using it at night 10mg. I found a
site online suggesting biotin for people using lipoic acid. This is because they share a transporter, and biotin transport may suffer. It appears to be working well on many things, for me, besides hair and nails... my right hand is far less stiff than it was. It is not expensive, no side effects, etc, and I get mine from Puritan's. I put my hubby on it too, to see if it would help his psoriasis... but he hasn't taken it as long as I have to notice yet. His skin always has "problems" and he is very slow to heal any cut or bug bite.

Mrs. D,
 

Is this a magnesium lotion you are applying to wrist and referring inner arm?
Also, what does using the Biotin accomplish?

I assume, because of taking the fursosemide (40mg twice daily) I would think I might be low in magnesium. Appreciate your informing me the Phillips does not go into the bloodstream. Wasn't sure if I am getting too much or too little magnesium. From what you mention, I would assume the cheleated magnesium would be of very little value.

Thanks,
Gerry

If you want oral magnesium to work, you need a form of chelated magnesium.

If blood vessels are constricted in the periphery, then the magnesium can't get there from oral intake. Inflammation will do this.

So using a topical form, may bypass this issue.
I apply the magnesium lotion to my swelling left foot when it gets intense. This takes it down for about 3 days.
I don't think the mag in my blood is getting to that foot which was damaged when I had surgery on it 50 yrs ago. That is my impression watching it swell up for no reason, and go back down when I put the lotion on it. I also apply the mag lotion nightly to my arms for the rest of my body to use.

Epsom-It and Kirkman's cream remain available for sale online topically.

Yes, I'm having a "flare up" now. I read that its the way PN is and its not psychological. Its similar to MS in that way.

Mrs. D,
 

I checked at Iherb.com for the Kirkman Cream. I herb is showing a Kirkman labs Magnesium Sulfate Cream (4 oz.) ($18.24). Is this the correct cream??

I was going to place a reorder for my Best Benfotiamine and if this is the correct cream, will add it to my order.

I Herb ships Free FedEX Smart Post 2-8 Day for orders of $20.00 or more. With the Benfotiamine will qualify for the free shipping.

Thanks,

(Gerry)

Yes, that is it. Used to be you had to buy it from the Kirkman website, but that has changed, and it is now available from many outlets. It comes with a little scoop to help you measure your dose.

Mrs. D,
 

Thanks for your response. I will place my order this a.m.

My legs and up to the groin area have been aching and more painful than usual the past several days. Am hoping using some of this cream might take the pain down a bit.


(Gerry)

Rebuilder
 

I am working on the root causes of my PN, but have found a good way to deal with some of the symptoms, without using drugs. Rebuilder Medical has a device, kind of a TENS, that I use with a foot bath fairly regularly. It increases circulation, and does ease pain. It was invented by David Phillips, the inventor of the ear thermometer, and other medical devices. It hasn't cured me the way I initially had hoped, but it's a good non-drug way to deal with the pain.
Steven

There are many threads about that device here; try the search facilities. Some have reported some success in varying degrees, but IIRC, there have been some issues with the company and its practices.

Doc