Hi, New here and need help!!
 

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.......

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

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

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!

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

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.

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.

Hi Kimmer
 

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

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

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

Hopefully, that's what the RLA will do when taken daily (and easier/less messy than lotions ;)) I've not seen it in any stores, but prices are much better online anyhoo. ;)

Doc

That's great that the lotion is working. It is a sign you are low.

WalMart also has a good magnesium oral supplement called SlowMag. Once you use the lotion everyday... you might also add in 2 SlowMags a day. This is 1/2 the RDA.

I used to need 3 strong blood pressure drugs (Lasix and Cardizem and Lisinopril)...then I had that terrible ACE reaction to lisinopril, and had to stop it. I was doing the daily Morton's lotion, and bingo...my BP dropped to near normal. Now I only use the smallest dose of beta blocker (atenolol). My doctor is amazed. This tells me that the magnesium in the lotion is working on my hypertension as well!

What happens is that local inflammation can constrict blood flow, and even if you take magnesium orally, it might not get to the target places it needs to go to, and the problems continue. The lotion bypasses that problem and opens up circulation to the areas suffering.

Burning Thighs
 

Kim,

I just want to let you know that your description of burning thighs is similar to my experiences. It is a kind of pain that most people just can't understand. It makes it hard to talk to others about it because they just have no point of reference. It's really tough so just hang in there. I'm sorry you are experiencing this.

Best,

Mike

Thanks Mike, it's so nice to know that it's not just me!! Lol. And also when you try to talk to your friends and family there is only so much about your constant pain that they care to hear about, I'm sure it gets old. So I just keep it all bottled up inside. It is very hard to want to get up and face each day. Why does it have to be on my thighs, everything touches them.....there is no escaping....:mad:

That's one of the cycles I believe most of us go through. It's also one of the reasons for support groups in general -- places to vent/talk about these issues with eyes & ears that very much understand.

Doc

hi to all of you
This is just a little comment to join in the discussion regarding pain relief. I have been diagnosed with sensory motor polyneuropathy of long fiber nerves, small fiber neuropathy as well as autonomic neuropathy. I will tell you, the small fiber neuripathy is the worst ever!! The burning is really bad, all over.
I have now tried different kind of meds. The doctor started with Neurontin, I took it for a while, but I too had to increase the doses and it made me dizzy. I started Lyrica, have taken it some months, but have to take so high dose, it also make me dizzy. So no the doctor is trying a combination of Amitryptyline and Lyrica. Regarding Tylenol, yes one has to be very careful. I had to take it sometimes for headache( I can not take NSAS due to blood thinners too) But I am very concious regarding the liver danger.so I try not to take it much. But I do not think it would help for the burning neuropathy pain. I also get a special compound cream with Gabapentin and Lidocaine, but it is very expensive ($50) due to insurance willnot cover it, so now I hear from Mrs D about the MortonEpson lotion and I will try it.

hi again
One more thing to all of you. And to Mike and Kimmer. I tell you, it is so hard, because I do not think people in general understand this neuropathy pain much. Neuropathy and particularly burning small fiber neuropathy all over, is the Worst pain ever. It is hard when one has so much pain all over one has to be on pain medication causing other side effects. It has been so hard for me for 1 year, and I have had to cancel trips and family gatherings, because it is hard to deal with the pain. I just keep on thinking that I will get better,( but I do not know) so I say, "we will do the trip next year."
I know, people do not understand, because I have heard coments like " psycho somatic complaints"
Hopefully, soon there will be more recognition about this condition.

SYNNOVE,
The Tylenol would relieve "slightly" the major pain I have while on my feet all day and basically it is more of a mental thing.....I THINK I am doing something to try to relieve my pain by taking it. Does that make sense? The Morton's Epsom salt lotion is a very nice temporary reliever, it is very hard to rub on as nothing can touch my thighs without screaming pain, but it's like when you put Aloe on a bad sunburn.....it takes the sting away for a short time. I am not sure tho how many times a day you can use this lotion, can you get too much magnesium??? Am ordering the r-lipoic acid online and am hoping it helps a lot!!!!

Hi
Kimmer, I am not so familiar with all the supplements. But ask Mrs D. she will know. But , yes, sertainly, I do believe one can get too much magnesium. I think Mrs D said, put a small amt on inlittle areas of 1 inc diameter or so.

I can not remember if I saw in your earlier posts, did you have an EMG test? You should, that way they will establish which nerves are affected.

Do you have a neurologist that specialize in neuropathy? You should.

This is a book I will recomend: PERIPHERAL NEUROPATHY by Norman Latov, MD phD.
You can buy it on Amazon. It is very helpful, and will answer a lot of your questions.

Synnove

Hi, no, I have not had an EMG yet but have an appt with a neurologist the end of August. I live in an extremely rural area and in the past the only way to see a neurologist was to travel 4 hours to Vermont, but luckily there is a new one about 1 hour away now!!!!! I Dr. at a pain mgmt clinic but scheduled this with the Neuro on my own as I am not happy with all I have gotten from the clinic. Thanks for the tip on the book, I will look into it! I read every day. Good luck to you! <3