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Old 07-22-2010, 02:52 PM #121
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Default Cardio and Strength Training

Hello everyone - just joined a few hours ago. I've got BAD problems.

My neuropathy is SO bad, I'm taking 800MG of Gabapentin THREE times daily, and it's STILL not killing the pain. I've been usually tied to fitness, but NOW, I don't want to go NEAR the gym.

When I finish lifting weights, my HANDS and feet ache from the moving the weights. If I'm doing chest presses, or any other exercise that involves pushing heavy weight, my hands reek HAVOC! Sharp, stabbing pains all night. I don't know what to do. I can't even teach my child how to ride her bike because I can't run behind her anymore. The pain is SO bad...

I am a Type II Diabetic (un-diagnosed for SEVERAL years). Here's the thing.

I went to my new doctor (hadn't gone in 10yrs since my old doc died), and she ordered up a physical. I only went because I'm 43 and had not had a prostate exam, and my family was giving me fits about getting it done.

She ordered a HUGE battery of tests (10 vials of blood taken) AFTER the physical exam and found my A1C to be 13. Since I had a fear of needles, she agreed to allow me to try and bring my blood sugar down via diet, exercise, and oral meds. I'm below 200 after meals at all times now. But still only around 100 every now and again. Median is about 140.

I spoke to her briefely about feeling a slight pain (like nerve pain) and numbness while running.

I've noticed that as my blood sugars are coming down the WORSE the neuropathy has become!!!! And NOW, the pain is constant.

Next, sometimes depending on how I'm sitting in a chair or lying down, the pain can be worse. Feels like my hands and feet are asleep and then that graduates to stabbing pains. It's horrible.

Now.. can this TRULY be reversed? And what in addition to the Gabapentin can I take. The bitter melon nor the Gymnemma hardly do anything for my sugars.

I need help.
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Old 07-29-2010, 09:31 PM #122
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Default question

Quote:
Originally Posted by Wing42 View Post
in spite of a negative prognosis from three neurologists. I was in severe pain and burning for years, with loss of balance, foot drop causing frequent stumbles, no ankle reflex in left and 50% in right, and hardly able to walk. The pain ranged from 6-8 on the 0-10 scale with breakthrough pain at 9 or 10 experienced as either electric zaps, or feeling like a carnivorous worm was eating at my toe and metatarsal joints. I also had extremely hypersensitive skin, and other areas where the skin was numb enough to stick a pin in.

Now, I walk or hike an average of 12,000 steps a day on my pedometer, have wonderful balance (not as good as in 1992, but I'm 65 yrs old now). My pain ranges from 0 to 4 with very occasional breakthrough pain in the 6 or 7 range, about 2 now as I type this. Both ankle reflexes were measured at 100%. There are still some mildly numb skin areas, but almost no hypersensitivity. I still show some neuropathy when tested with two points, tickle, and vibration. EMGs and nerve conduction tests have always been normal since my PN was small fiber sensory.

OK, it's not healed, but I can happily go through the rest of my life like this. No longer does the pain wakes me up, stop me from walking or driving, and is never so bad that it's hard to concentrate.

The program I've followed all these years is on page 3 of the stickies. There have been changes to it the past couple of years, but the the essential program hasn't changed. It's a hassle to edit old postings on this forum, but I'll work with a moderator to do so one of these months.

A CHANGE: I meant page 2 of the stickies. The neuropathy must be affecting what remains of my brain.
How do I get to page 2 of the stickies? I'm new to this site and am interested. Matt
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Old 07-29-2010, 10:10 PM #123
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Quote:
Originally Posted by madmat65 View Post
How do I get to page 2 of the stickies? I'm new to this site and am interested. Matt
Matt.... you are in the stickies!!

But..... if you're trying to find them from scratch, here are some directions.


On the home page of the PN forum (as with other forums) the stickies are the first threads in the forum, so go back to the front page, and look up above.

The first things you see top left are green arrows. These are the sticky threads.

So far we have =

Sticky thread -Neuropathy does improve (Multi-page thread 1 2 3 4) started by LizaJane

Sticky Thread: - The Vitamin B12 Thread: (Multi-page thread 1 2) started by mrsD

Sticky Thread : - Help with applying for SS Disability. Started by DanP

Sticky Thread : - Important Links to Useful websites (Multi-page thread 1 2)

To find page 2 on any of these, simply click the 2, but you might like to read them from the beginning anyway, as there's lots of good information up there.

Other than that, go to the bottom right of any thread and you will see the page count. Simply press the page number that you seek.
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Old 09-19-2010, 07:28 AM #124
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Default It can be healed...

Quote:
Originally Posted by Schumacher View Post
This is the most encouraging news I've heard today! My nerves can heal, and I don't have to believe these doctors who tell me otherwise. For all of us with idiopathic small fiber neuropathy, I rejoice!

ML
I use Fentanyl 75 mcg patches-1 every 72 hours. I find that these work great. I am one year post diagnosis, and have improved from basically not being able to walk at all to running three miles per day, swimming, riding my bike, walking my dog, etc.

Please don't think I'm a religious nut, but I received a spiritual healing as well. While not relieved of my condition, I was very much relieved of the bondage that the disease held me in. Literally happened overnight. I thank God every single day, and strongly encourage my fellow pn'ers to go to God and ask for healing. Nothing has helped me more, and I live my life in constant gratitude now.
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Old 09-23-2010, 05:07 AM #125
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The futur is neurogenesis for nerve lesion (regrowth of nerve)

Here you can help yourself with :

HORMONES
Pregnenolone Testosterone
Androstenedione Dehydroepiandrosterone
(DHEA)
Chorionic Gonadotropin Growth Hormone
AMINO ACIDS
Taurine Gamma Amino Butyric Acid
Glycine Phenylalanine
NERVE TISSUE BUILDER
Alpha Lipoic Acid

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Old 09-24-2010, 12:59 AM #126
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Default P5P and B 12

Hi Mrs D. New to this forum today. I think I have small fiber PN, and
would like to know how much B12 to take? Also what is P5P? And how
much of it? Thanks so much.

Susan

Quote:
It is very important for the newer members here to realize that THEY
THEMSELVES have to become an active part in their handling of PN. One cannot expect a doctor to do the same type of intervention for PN that they do for say, pneumonia. So people do expect something and when they get NOTHING, it seems very unfair and frightening.

Because there are so many types of PN...it is best to know what you are
dealing with. So diagnosis is important up to a point.

But for day to day management of pain/discomfort, and for suggestions to
assist and speed healing if possible, the medical community is very ineffective.

Rose (B12) and I have been here over 10 yrs now (on this and the other forum).
I brought P5P and magnets to the boards long long ago. I also brought essential fatty acids (omega-3) research and in some cases was even attacked for that! Now we see transfats removed from our food and omega-3s now added to eggs/mayo and peanutbutter! And I search constantly for more ideas and offer my experience with my own searching for relief.
Now I see P5P in an RX designed for neuropathy! How cool is that? (Metanx).
And the reverse, the methyfolate I recommended for years has been sequestered by Merck to on RX use (not an FDA move), just because they want to sell more and make more $$ on RX products! Metafolin was SO INEXPENSIVE OTC...it is a crime that this happened!

So over the past 10 yrs, alot has happened to PN patients. I only hope that the new members read our board and the stickies to learn what their options really are!
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Old 09-24-2010, 03:35 AM #127
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Hello Susan, and welcome to NeuroTalk.

I put up a B12 thread here with some links and information.

I think if you are just starting out, you need to have testing first, to show where you are. I'd get the B12 done and Vit D (this is newer information, but valid and helpful too).

http://neurotalk.psychcentral.com/thread85103.html
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Old 09-24-2010, 06:16 PM #128
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Help more info please

Would you please list exact medicines, etc. that you are using?
Thank you... Carlisle
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Old 10-19-2010, 10:18 AM #129
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Hello Brian, not sure if you got what I was writing but anything you could say to let me know what you have done that would help me to be on the road to stop the hot feet 24-7would be most appreciative.
God bless,

Rick
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Old 10-19-2010, 10:22 AM #130
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So Steve, what can I do to be on the road to getting results like you have.

Thanks for taking your time to answer.

Rick
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