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Old 08-07-2011, 03:21 PM #11
norahs norahs is offline
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Sheltiemom,
I just sent you a private message, let me know if you don't get it, I'm kind of new doing that.
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Old 08-09-2011, 02:40 PM #12
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Sheltiemom,
I just sent you a private message, let me know if you don't get it, I'm kind of new doing that.
Yes, I did and sent you one back. Thanks very much.
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Old 08-23-2011, 02:23 PM #13
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Originally Posted by bis22 View Post
My feet have been burning for 3.5 years now, which was probably caused by prescription drugs ( I stopped taking them soon after my symptoms appeared). For the past few years it hasn't really gotten better or worse. I've had tons of tests done and everything has turned out normal. I've even had a skin punch biopsy (they took a sample from just above my ankle) and the nerve fibers in that were normal.

Di you try pens therapie(Percutane Elektrische Neurostimulatie) its something simulair to the rebuilder used in the US.
I can say for sure that it helpes with pain but i am not sure it helpes with burning pain.
I got a neuropathie because i used dapsone a anti bacterial poison..

Currently i am reading 2 books about hyperbaric medicine has any of you give this a thought in the past
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Old 08-31-2011, 12:08 PM #14
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Originally Posted by jurgen975 View Post
Di you try pens therapie(Percutane Elektrische Neurostimulatie) its something simulair to the rebuilder used in the US.
I can say for sure that it helpes with pain but i am not sure it helpes with burning pain.
I got a neuropathie because i used dapsone a anti bacterial poison..

Currently i am reading 2 books about hyperbaric medicine has any of you give this a thought in the past
I've never heard of PENS, but I tried acupuncture where I got needles put into my feet and they were electrically stimulated. Is that similar?

I don't know much hyperbaric medicine. What are you finding out?
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Old 09-15-2011, 02:41 PM #15
LaurenAly205 LaurenAly205 is offline
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Originally Posted by bis22 View Post
My feet have been burning for 3.5 years now, which was probably caused by prescription drugs ( I stopped taking them soon after my symptoms appeared). For the past few years it hasn't really gotten better or worse. I've had tons of tests done and everything has turned out normal. I've even had a skin punch biopsy (they took a sample from just above my ankle) and the nerve fibers in that were normal.

The pain is tolerable if there isn't much pressure on my feet, but if I'm standing for a while it starts to get pretty bad. I also found out that if I have a couple alcoholic drinks, it can get really bad for the next week or so afterward.

I've tried lots of supplements, acupuncture, Anodyne therapy, and nothing has helped. Is there anything else (other than drugs to mask the pain) I could try? Or perhaps it could also be a condition besides neuropathy? I'm only in my 20's, so the idea that I might have this for the rest of my life is frustrating.

Any advice is appreciated!
Hey I'm 21 and in the same boat as you. Ive had small fiber neuropathy for over a year now but it was on diagnosed in January 2011 by one of the top neuropathy specialists in the country at Massachusetts General Hospital. This whole radiating pain thing is UNBEARABLE i dont know how you have dealt with it for that many years. Doctors have put me on Gabapentin, Lyrica, muscle spasm meds, flexirel, and now finally Methadone (which i stopped taking) how do you deal the the burning pain? I have it in my arms (finger tips to elbows) and my legs (feet to my knees) does anything help you?????
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Old 09-16-2011, 11:53 AM #16
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Yes - try the Duragesic Patch - also known as the Fentanl Transdermal System. I've had PN for over 21 years and this is what I have been using since 1-9-02. I'm presently using a 50 and a 100 strength patches changing them every 2 days. It reduces my 7 to 9 pain down to 2 to 4 levels. Doesn't work for everyone but certainly worth a try.
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Old 09-16-2011, 12:26 PM #17
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Originally Posted by LaurenAly205 View Post
Hey I'm 21 and in the same boat as you. Ive had small fiber neuropathy for over a year now but it was on diagnosed in January 2011 by one of the top neuropathy specialists in the country at Massachusetts General Hospital. This whole radiating pain thing is UNBEARABLE i dont know how you have dealt with it for that many years. Doctors have put me on Gabapentin, Lyrica, muscle spasm meds, flexirel, and now finally Methadone (which i stopped taking) how do you deal the the burning pain? I have it in my arms (finger tips to elbows) and my legs (feet to my knees) does anything help you?????
It sounds like you have it worse than me. I suppose I should be thankful!

I try not to be on my feet more than I have to during the day. If it gets bad, sometimes soaking my feet in hot or cold water helps. If it's bad when I go to bed, keeping my feet above the covers so they're well ventilated seems to help. Throughout the day, keeping them at a normal temperature (not too hot or too cold) sometimes seems to prevent it from getting bad. Also, I don't drink alcohol (my condition started soon after I reached legal age – ironic, right?). On average, it's tolerable for me, but it sucks having to suffer through it, and it's frustrating to feel so limited. I don't know if I've been any help, but I hope you find something that works for you.

How did you find the neuropathy specialist?
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Old 11-01-2011, 01:13 PM #18
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Wink Bumping up:

@Bis...

Have you tried Benfotiamine? This special B1 form is helpful for those who have reactions to alcohol. Our alcohol metabolism involves other alcohols in food besides ethanol, and it also involves carbohydrate metabolism. 300mg a day for a month will show if you respond to this as a trigger.

Also r-lipoic acid is helpful too. 100mg a day of the stabilized form on an empty stomach.

Burning for me responds to Biofreeze gel. This can tide you over until the supplements start working.

Yes, I was on vacation during this thread. The AlkaSeltzer is helpful, but don't rely on it heavily, because of the aspirin content. Use wisely for the worst burning times. It blocks histamine receptors which may be the cause of some burning issues in some people. Only use if you are allowed aspirin and are not taking blood thinners, etc.

Any other ????.... Please use this thread for those.
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Old 11-01-2011, 02:14 PM #19
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Originally Posted by mrsD View Post
@Bis...

Have you tried Benfotiamine? This special B1 form is helpful for those who have reactions to alcohol. Our alcohol metabolism involves other alcohols in food besides ethanol, and it also involves carbohydrate metabolism. 300mg a day for a month will show if you respond to this as a trigger.

Also r-lipoic acid is helpful too. 100mg a day of the stabilized form on an empty stomach.

Burning for me responds to Biofreeze gel. This can tide you over until the supplements start working.

Yes, I was on vacation during this thread. The AlkaSeltzer is helpful, but don't rely on it heavily, because of the aspirin content. Use wisely for the worst burning times. It blocks histamine receptors which may be the cause of some burning issues in some people. Only use if you are allowed aspirin and are not taking blood thinners, etc.

Any other ????.... Please use this thread for those.
Ok, I'll try those two supplements. I've got some methylcobalamin I can start taking again too, if you think that would be helpful.

I also often have pain that isn't really burning, but more like aching or soreness - usually from pressure on my feet from things like standing or wearing tight shoes. It feels like I've been on my feet the entire day even though it may have only been an hour or less. I guess I've been assuming this particular symptom is common with the burning. That wouldn't make any difference in your recommendation, would it?
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Old 11-01-2011, 03:59 PM #20
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Lightbulb

Feet that hurt only when standing....hmmmmm.

Have you been to a good podiatrist to check for falling arches,
arthritis spots, sesamoid bone problems, spurs, etc etc?
If your feet hurt more when you are on them, I'd check them out carefully. My feet hurt more in bed, and I've several issues
with them including the PN. That is why you see me offering many solutions, because I've had to try them all!

There are many mechanical issues with the feet and ankles...
This site is just fabulous...you could spend days there really reading all the details!

http://www.northcoastfootcare.com/

There are diagnostic help sections to identify problem areas on that site too.

Another thing to consider is magnesium supplements...and/or lotions with magnesium in them.
CVS Epsom lotion ( in CVS stores--ask them to order if you can't find it)

Epsom-IT (slightly more expensive and online)

Kirkman magnesium cream (online only).

When you rub this in...you will find it very very helpful. Doing it regularly will help more.

My magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Magnesium improves blood flow to the extremities and also is important for over 100 other critical functions including your heart, muscles and brain.
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