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Please, anyone, advice on SFN?

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Old 04-27-2019, 10:19 AM   #11
janieg
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The buzzing can turn to burning on any given day. The one trigger I know that causes it is when I eat too much salt. The effect is fast and furious.
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Idiopathic, Full Body, Small Fiber Neuropathy since 11/2013. Symptoms include altered sensation in toes; constant tingling/vibrations in feet and lower legs; intermittent tingling in temples, scalp and face; full body "buzzing" in the morning (suspect mild dehydration); referred sensation in feet cause by touch; occasional bouts with severe cramping in my feet and legs; when flaring, full body burning.

Metabolic issues: FBG -88 A1C - 5.1 with glucose spikes near 300, can't metabolize alcohol, and salt consumption makes my neuropathy 100x worse.

Current treatments:
  • Omega 3's - Fish Oil (2400 mg EPA, 1200mg DHA), 200 mg Magnesium Threonate
  • 5 mg Meribin Biotin for low-normal biotinidase levels.
  • Low carb "back to the farm" diet, lots of water
  • Quell TENS unit, 5% lidocaine patches, magnesium cream, CBD oil
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Old 04-27-2019, 05:26 PM   #12
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Originally Posted by Ragtop262 View Post
I agree with the others. (Probably not that big a deal to not get the skin punch. It seem like only a limited number of people do get it.)

The symptoms you described do sort of fit the type of odd symptoms that SFN causes. Mine started almost 5 years ago with a sudden onset of muscle tightness, then twitching and cramping. After many Dr. visits and tests still no diagnosis, but almost certainly SFN. Things got better but still some foot pain. I take some Gabapentin to control it. I'm still working in a job that keeps me on my feet a lot.

It seems no two people with SFN experience exactly the same symptoms. And no way to predict if it will get better, stay the same, or get worse. (The people who frequent the forum here tend to be ones with ongoing and progressive issues, but I think that's because the ones who get better don't see the need to continue coming here.) I like to come back at least once in a while to check in and let people know it's not necessarily doom and gloom
I appreciate your insights, Ragtop. Like the OP, Sarah, the fear of how things might progress is as psychologically insidious as the physical symptoms. It's reassuring to know that one reason these boards seem so quiet is that a percentage of members recede into the distance as symptoms naturally quieten down.

The unpredictability is a real curse. My paresthesias have taken a turn towards the burning and painful in a period of less than two years.

I'm taking resveratrol as well as B vitamins and fish oil in the hope these might have a stabilizing effect until, I hope, proper treatment comes along.
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Old 04-27-2019, 05:26 PM   #13
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Ragtop: what is your daily dosage of Gabapentin, please?
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Old 05-02-2019, 09:03 AM   #14
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Ragtop: what is your daily dosage of Gabapentin, please?
I was at 1800 mg/day, but had some side effects - sedation, etc.) I tried to slowly taper off and was able to go down to 600 mg/day. Any lower than that and the pain in my feet hot pretty bad. So I'm at 600 mg/day (300 in the morning and 300 before bed). 600/day is considered a very low dose for Gabapentin - but it takes the edge off for me, and the side effects are minimal at that does. But, everyone responds differently, so don't assume you would get the same results.
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Old 06-14-2019, 09:21 PM   #15
Sarah19901
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Does anyone get really bad cramping in their feet with the buzzing and twitching?

I have a cold and my symptoms seem to really be getting out of control.

I'm not sure what to do anymore. I am losing a bit of hope
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Old 06-15-2019, 11:35 AM   #16
echoes long ago
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Originally Posted by Sarah19901 View Post
Does anyone get really bad cramping in their feet with the buzzing and twitching?

I have a cold and my symptoms seem to really be getting out of control.

I'm not sure what to do anymore. I am losing a bit of hope
magnesium has worked well for the cramping i get....i still get cramping but much less.
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Old 06-17-2019, 02:35 AM   #17
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magnesium has worked well for the cramping i get....i still get cramping but much less.
Do you know if most people are still able to walk and maintain a job with this condition?

I am devastated and barely hanging on.

I want to be able to walk my dog and go to work but if this gets worse I don't know what I will do
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Old 06-17-2019, 11:04 AM   #18
echoes long ago
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Do you know if most people are still able to walk and maintain a job with this condition?

I am devastated and barely hanging on.

I want to be able to walk my dog and go to work but if this gets worse I don't know what I will do
as Glentaj posted in another thread, its impossible to predict the progression or lack or progression of small fiber neuropathy. It applies to large fiber neuropathy as well.

some people get worse, some stay relatively the same, some get better if not cured. Its very important to take the steps necessary to try to determine a cause. It could be possible that yours could be one of the causes that is treatable.....b12 deficiency, diabetes, cancer treatments etc. if not its important to do what you can to provide the conditions for your nerves to regenerate and stop progression. these would include lifestyle changes in diet, supplements, exercize, limit exposure to toxins etc.

Don't despair though!!! I think that most people do continue to be able to work and deal with the pain levels they have with small fiber neuropathy and continue to be able to walk their dogs and live a relatively normal life.
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