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Old 11-24-2009, 10:02 AM   #1
aeb105
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Default This Road

What's going on? Just jumped in to say Hi to everybody. My problems related to Small Fiber Neuropathy started 3 years ago after using a spinal exerciser machine. I had always had pain between my shoulders prior. While using this machine I felt some kind of tear in my upper back neck area and felt pain around my heart. Soon after that I was lifting something and it felt like the nerves around my stomach burst. After that the symptoms started.

Muscle twitching, breathing problems, burning in limbs, constant bug crawling itching centered around chest back, arms and face. Painful needle like pressures over feet, hands, arms and sometimes face. Heavy solid pressure pressing into limbs. Reflux that started to become uncontrollable. Dizziness and breathing issues that would completely incapacitate me to the vegetable point. Thundering headaches that would absolutely put me out of commision

I would try and exercise and would lose sensation in one foot or both. Sometimes I would be walking and all of a sudden I would stop feeling my legs and would start to stumble and sit down. It was like the nerves were coming unbundled and misfiring. After exercise would start to twitch uncontrollably sometimes in legs.

The worst were the electric shocks. I would get them after repeated pressing on things with my fingers for a long time. Like say typing on the computer or playing a video game or even guitar. Sometimes after physical activity or after being in the car for a long time. Even looking down reading a book. Like huge zaps or nerve electricity that would jolt me to the core.

Did all the requisite testing locally and they found 2 small hernias in the abdominal area. I had those repaired. Then full Spinal MRI and such at the Clevelend Clinic. They found some degeneration in the cervical disks and a kyphosis in the thoracic spine. Next they did a nerve fiber sample and I was diagnosed with SFN.

They told me they couldn't really help me other than give me some Lyrica or Neurontin. They didn't know much about Small Fiber Neuropathy. I had tried Neurontin from my local Neuro and it worsend my Reflux and gave me other issues. This is when I started to research, cross-research and experiment with herbs and combinations of supplements.

Instead of Neurontin, I started taking Bacopa and Gotu Kola. Both stimulate Gaba(quelled the pain and sensations) and Acetylcholine(good for rebuilding nerves) and don't give you the slew of side effects that Neurontin did. I noticed immediate better sleep and it really put my mind at ease as far as realizing how much stuff sucks now. I added Holy Basil for headaches and such. In addition, I found Topical Magnesium(good for nerves, ATP energy and pain)highly effective.

I tried ALA and ALCAR and NAC. I disovered I couldn't take ALA because of my reflux so I looked at other supplements. I started taking other Antioxidants like Pomegranate, GliSODin, Selenium and Milk Thistle, Blueberry and Grape Seed Extact. Found definite releif and was able to ease off the Bacopa and just take Gotu Kola and Magnesium Oil as well as my Antioxidant cocktail and Fish Oil. Later I added Taurine and Vitamin C and MSM.

After a while I learned to change things, activities and such to better deal with and not exacerbate the symptoms. I know that sleeping on my stomach or sides, looking down to read, walking for long time or doing anything continuosly with arms, hands rapidly does it.

It drills me that doctors have that condescing attitude when you tell them your problems. and yet can't help you whatsoever. In fact 2 of my doctors doubted this was even real and thought it was psychosomatic. Well, I guess it wasn't real until I went to the Cleveland Clinic and was able to bring them proof.

I considered turning the lights out so many times over the last 3 years because of this stuff and egotistical doctors that "couldn't" help. All they offer is a bandaid solution from Big Pharma that will give you other problems in the long run and new problems in the short run.

This has been a painful learning process and I would like to help others in any way I can as well as learn as much as I can. I think there is alot to learn from you guys about this stuff and would like to actively contribute as much as I can. After all, most of you know better than the doctors about what is going on and I have some theories as well.
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Old 03-23-2013, 04:47 PM   #2
Skok
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Default Re: This Road

I realize that you posted this quite some time ago, but I also had quite a few of the same problems that you had with neuropathy. I have several herniated disks in my back and have suffered with chronic pain since I was about 21 - I am currently 47. Due to this I don't get out much and am unable to do most any kinds of exercise. Around 5 years ago I started getting severe joint pain, tingling and "electric shocks" in my hands and feet. My pain management Dr. prescribed Neurontin, Gavapantin, Lyrica and a whole host of other things that either did absolutely nothing, or made me feel even worse (breathing difficulty/depression, etc.). I had heard that taking magnesium could help with nerve pain, but the key was that it had to be taken with calcium. I started taking one 400mg magnesium/200mg calcium capsule 3 times a day and I almost immediately began to feel better. The joint pain and tingling disappeared and I had more energy than I'd had in years. I also take a multi vitamin that is high in Bs (and contains B complex) every morning and drink protein shakes throughout the day. I believe one of the problems people run into is the inability to get proper nutrition through the food we eat. The more I put the right kinds of vitamins and minerals into my diet, the better I began to feel. . .
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Old 03-26-2013, 07:15 AM   #3
lined_in_silver
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Very inspiring and motivation for me to turn back towards supplements . I. On lyrica and narcotics-and know that they mess with my body as well as mood.
It will never "fix" the problem. The doctors are so eager to say "OK you have neuropathy-take this pill because its the best medication for it-see you in 6 months".
I'm very grateful to have this forum for idea and support that I would never get in the doctors office .I would even go as far as saying it has pulled me out from a very dark night of the soul.
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