[kimmer13669]

Hello everyone! I am at my wits end and need someone to talk to and need good advice. My friends and family just don't understand. I don't know how much more pain I can handle. I found this site while searching about neuropathy and have read through some postings, I think this will be very helpful for me!!!

I am 46 and suffer terribly every day from neuropathy that has now traveled to my thighs. I first went to my physician last fall because a couple of my toes had suddenly gone numb, no feeling in them at all, and bad pain in my feet. He did a simple test (pin picking on the toes and different areas of my feet), saying that it was most likely from diabetic neuropathy. No I have been a diabetic for 11 years but 90% of the time my blood sugars are low....not high. But due to the Pain I was having in my feet and also my legs (from blood clots...another story) he sent me to a pain management clinic. By the time I got to get into the place the Pain in my feet, and the burning feeling in them was so bad I could hardly walk at times.

At first I was given Neurontin 300 mg a day and within 2 days I was a brand new person! No pain at all. I thought that was a miracle drug....but within a short time it began to wear off and the burning terrible pain came back. So in the next few months the Neurontin was raised until it was 1600mg/day and it was just not effective anymore. So instead of raising the dose any higher she then changed me to Lyrica and Celebrex.
So I have been taking them now for about 3 months, maybe, and the Pain in my feet is mostly non-existent BUT I have the worst pain, burning, sharp pains in my thighs now that is going to be the end of me......It is insanely horrid!! Inside my thighs feels like they are completely on fire and melting away and on my skin, that feels like the worst sun burn, third degree, all the time!! It is insane for my pant legs to touch my skin, my bed sheet, to wash or dry my legs causes insane pain.

I am going out of my mind! I don't understand. Is this just neuropathy??? I took it upon myself to make an appointment with a neurologist, which is not for another month....Can anyone give me some insight??? Is there something I can do to try to get rid of the Pain?? I cannot take ibuprofen products due to being on blood thinners. I was taking 3000~7000mg of Tylenol a day but it does not do anything anymore. Is this what I have to look forward to for the rest of my life????
Someone please help, in northern New York.......

[Dr. Smith]

You could try stabilized R-Lipoic Acid, 100 mg/day. There is much information about it here (use the Search function) and on the web. It has been shown to be effective in relieving the burning pain of PN -- particularly diabetic neuropathy.

r lipoic acid diabetic neuropathy

One caution -- it may also slightly lower blood sugar.

Doc

[mrsD]

Welcome to NeuroTalk:

You can damage your liver with high doses of Tylenol like that!
Please be careful.

First off many diabetics are low in magnesium. This is because you lose it thru the urine more than non-diabetics.

Magnesium is in whole foods, and many don't even eat enough to get the RDA anymore. A good oral supplement or topical form may help you with this.

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html
Do not purchase OXIDE form of this...as it is not absorbed. It is used today as a laxative (Phillips tablets).

Try soaking in some epsom salts, and lukewarm water. 6-8 oz in a bathtub or 2 oz in a small foot tub. Some magnesium will be absorbed this way and it can be relaxing and very helpful.

Get your Vit D level checked and also B12. These can be low, and when they are low significant nerve symptoms can result.
Get your numbers for the B12 --should be 400pg/ml or above. Anything lower should be supplemented with methylcobalamin (active form) daily on an empty stomach.

This is our B12 thread:
http://neurotalk.psychcentral.com/thread1138.html

These are the BIG THREE supplements most commonly lacking normal levels in the US.

R-lipoic acid stabilized can help diabetics, as well. But do the Big Three first.
This is the R-lipoic to try (100mg a day--this is the newest form)
http://www.amazon.com/Doctors-Best-S...octor%27s+Best

[Susanne C.]

No advice, you have already been given some, just a confirmation that you did the right thing scheduling a visit to the neurologist, these are neuropathy symptoms. There is probably nothing they can do, except perhaps prescribe for the pain, you will have to ride this one out. I had similar all over body sunburned feeling. It has now settled down to my left thigh only, and it varies in intensity. Things tend to be like that, they reach an unbearable peak and then subside or you get used to them to the point where they are bearable. Sometimes it takes a lot of medicine to reach that point, but Tylenol is not a good choice.
It was suggested to me that the opiate therapy I was on for the pain (i have hereditary sensory motor neuropathy with fairly high pain levels ) might have been the culprit, and I did discontinue for several weeks, but without effect other than increased pain.
This is one of the most difficult of the symptoms to deal with, but several people here have had it, for most it levels off, but it can take a while to do so.
I had to completely change what I wore, no jeans or stiff clothing, different cut of underwear, softer fabrics, it was very challenging. I am still very sensitive to the elastic in my underwear as my numbness extends to the hips. Good luck!

[kimmer13669]

THANKS EVERYONE!!! I really appreciate the answers. I know that about the Tylenol but had no choice for an alternative. I will get some Lipoic acid and magnesium today and have the Dr order tests for the other. Unfortunately I don't have a bathtub (only shower) so I can't soak in the tub. Susanne, it is so nice to hear that what I am experiencing is"normal" for neuropathy, but I didn't realize it had to peak, in a sense, then will subside.......I don't want it to peak!!! :-( I have been wearing sports as much as I possibly can but for work I have to wear pants/capris.....so at work not only do I have to stand for 6-9 hours, I also have to bear the screaming pain!! I have the worst job I could have for having all these problems, a cashier at a Wal Mart......
Thanks again, I can make it thru another day. :-) Kim

[mrsD]

Well.... at WalMart is the new Morton's Epsom lotion.

You can apply that instead of epsom salts. It is in the first aid department, and with your employee discount it will be less than the retail of $5.98.

Apply only to intact skin, and only a quarter's diameter amount on each leg or foot . Don't slather it on. Alot of the magnesium is absorbed well from this. Keep away from the eyes.

[Hopeless]

Yes, that type of work is really difficult with your symptoms. I know jobs are hard to find now with our economy but is there another more sedentary job that you could do or want to do? I just hate to see you suffer so much by needing to stand so long. Can you get permission to SIT at the register?

Good luck to you.

[ginnie]

I am sorry you have PN. If you go to pain management, and they don't address your issues, it is time to head somewhere else. It took me four tries before I found a doctor who helps with PN. I use a compounded cream, lidocane patches, Hydrocodone very rarely, and the vitamines mentioned in the other post. I am better compared to last year. PN can be very hard on a person. You will find good support here and alot of information and ideas to help. Seek a physiatrist as the "whole Person" kind of doctor. If you can find one that specializes in pain management all the better. This is the kind of doctor I see, and I really did get some relief. I wish you all the best. ginnie

[kimmer13669]

Well I had to work so I got the magnesium supplement and the Epsom salt lotion. At my Wal Mart we did not have any r-lipoic acid so I don't have that yet. The lotion has actually taken away the intense sun burn feeling, for now, it is a huge relief!!!! I hope it lasts! I wish I would have known about this sooner! Thanks again! :-) Kim

[Dr. Smith]

Originally Posted by kimmer13669

THANKS EVERYONE!!! I really appreciate the answers. I know that about the Tylenol but had no choice for an alternative.

For people who have to take Tylenol/acetaminophen, it's not a bad idea to also take some N-acetyl cysteine (NAC) -- what hospital ERs give for Tylenol overdose. This doesn't mean that one can take more than the safe recommended dose with impunity; it just may help counter the deleterious effects.

Current recommended maximum doses are:
1000 mg within any _6 hr. period
3000 mg within any 24 hr. period

Doc