What helps the symptoms of Small Fiber Neuropathy?

Posted by margie1234 @margie1234, Dec 12, 2021

Good morning
I know most members here have more severe symtoms than I.
I woke up one morning in august with both feet tingling and with a sandy like feeling under my toes and bottom of both feet. I had no previous warning. My family doctor said that is strange maybe it will fo away on its own?? I had a short assessment with a poditrist which cost me $95 dollars and he said I had beginnings of small fiber neuraphy buy cushioned insoles and come back if it gets worse. To see a neurolagist here is 3 year wait and I have no coverage I am at my wits end on what to do for this. I thought only diabitics got this. My anxiety level is off the wall. I have researched on line and do stretches and walk. Any advice on what to do to possibly stop the tingling would be so much appreciated. Margie

Interested in more discussions like this? Go to the Neuropathy Support Group.

Sorry to hear about your plight. I have same condition and it is very painful and uncomfortable. Taking medication is the only solution. I have just started on Pregabalin low dose to begin will be increased a lot to get rid of pain and discomfort. Mine has got worse in 2.5 years I have had condition. It has turned my life over to be honest.

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@hw43

John, Thank you for reaching out. Actually, I have been to many doctors and have very confusing diagnoses. In 2011, a rheumatologist diagnosed me with Fibromyalgia. subsequently I saw 4 more rheumatologists who accepted that diagnosis and treated me as best they could. One of the last rheumatologist changed the diagnosis in 2018 because I was no longer responding to treatment and a blood test showed elevated Epstein Barr antibodies. The new diagnosis became ME/CFS, which stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, which has symptoms that are similar to Long Covid. The neuropathy started around 2018 and I have seen 4 neurologists since. Only one said :"it may be small fibre neuropathy, but he didn't treat it or go further in testing. The other three had no idea. I will be seeing a 5th neurologist in about 6 weeks who specializes in peripheral neuropathy. The neuropathy has become more intense and I occasionally wake up with numbness in my hands in addition to my feet and the pain in my feet and legs. I have never had Covid so far.

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A skin biopsy can determine if you have small fiber neuropathy. My son had his skin biopsy test at Johns Hopkins in MD.

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Does anyone else notice that eating less salt seems to help with pain/tingling?

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Good evening @honu95, Happy New Year and welcome to Connect. Get ready to experience the results of sharing. That is our mission here on Connect. Knowledge is power and we certainly encourage members to learn from each other.

I really don't know if I have less tingling without salt. Just to make sure, I have given up salt as much as I can. I also no longer use sugar when I can find options without it, e.g. Yoghurt does have sugar-free options. I have also given up alcohol and coffee. It didn't make sense to me to want to be calm and relaxed and then drink coffee and other caffeine products. It appears that I don't miss any of these items. So I am hoping that it has helped my SFN (small fiber neuropathy).

Have you been diagnosed with a form of neuropathy? What treatments are helping you?

May you be free of suffering and the causes of suffering.
Chris

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@honu95

Does anyone else notice that eating less salt seems to help with pain/tingling?

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Hi @honu95 ! I love @artscaping ’s response, though she is braver than me with the coffee thing - I have secret hopes that it is what keeps me from needing a nap in the afternoon 🙂. This neuropathy thing is so much trial and error to see what works for us, and salt seems to hinder me. I have noticed that holidays with a couple of days of salty ham impacts me, as well as too much dining out where I know the foods were salt enhanced in my poor food choices. It might take a couple of days, but when I return to controlling the salt in my diet, I feel improvement.

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Hi! This site is the way to start a New Year!! I always learn something! PN is my BIG problem, but I have another BIG blood pressure problem as well. It put me in the hospital several times and the ER even more. Now, I was told to just live with it, no matter how high it goes. I can wake up with very low pressure, or high and it continues with up and down all the time. I have seen many Doctors, but I guess I have to accept that I am one of those unexplainable cases. I take a few prescription meds for it, but for whatever reason, it is NOT under control. I do NOT use salt, but some prepared foods have more than I should have (crab cakes)! I drink 1/2 cafe coffee, always no caffeine tea. Finally, here are my questions: Is it worth it to get all your vitamins and prescription drugs reviewed? I asked my Pharmacist, (and I offered to pay her) but, she said she did not have time. I have a "heady" feeling after I take my pills that lasts all day. Now, if I am home all day, I wait until almost lunch to take my meds. Probably wrong, but seriously wrong? Have to take them the same time each day? I have a new PCP since mine retired, and is not really helpful. Open to ideas! Happy New Year!!

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@artscaping

Good evening @honu95, Happy New Year and welcome to Connect. Get ready to experience the results of sharing. That is our mission here on Connect. Knowledge is power and we certainly encourage members to learn from each other.

I really don't know if I have less tingling without salt. Just to make sure, I have given up salt as much as I can. I also no longer use sugar when I can find options without it, e.g. Yoghurt does have sugar-free options. I have also given up alcohol and coffee. It didn't make sense to me to want to be calm and relaxed and then drink coffee and other caffeine products. It appears that I don't miss any of these items. So I am hoping that it has helped my SFN (small fiber neuropathy).

Have you been diagnosed with a form of neuropathy? What treatments are helping you?

May you be free of suffering and the causes of suffering.
Chris

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Hello Chris and thank you for your response. I have not as yet been officially diagnosed with neuropathy as I am just not ready to hear the news. I have had ongoing pins and needles, tightness, cramping and burning sensations in my arms and legs since late November 2022. I plan to see the doctor soon and ask if there are any new treatments. Not really very hopeful though due to reports I have seen from my own research and reports from individuals affected with the disorder on this site. Relating to salt intake, I do notice that I seem to feel much better with a low salt diet. Thanks again!

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@dbeshears1

Hi @honu95 ! I love @artscaping ’s response, though she is braver than me with the coffee thing - I have secret hopes that it is what keeps me from needing a nap in the afternoon 🙂. This neuropathy thing is so much trial and error to see what works for us, and salt seems to hinder me. I have noticed that holidays with a couple of days of salty ham impacts me, as well as too much dining out where I know the foods were salt enhanced in my poor food choices. It might take a couple of days, but when I return to controlling the salt in my diet, I feel improvement.

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Thank you everyone for your kind replies. Helps to know there are others out there who are trying their best to manage this very strange and troubling disorder.

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@fala

Hi! This site is the way to start a New Year!! I always learn something! PN is my BIG problem, but I have another BIG blood pressure problem as well. It put me in the hospital several times and the ER even more. Now, I was told to just live with it, no matter how high it goes. I can wake up with very low pressure, or high and it continues with up and down all the time. I have seen many Doctors, but I guess I have to accept that I am one of those unexplainable cases. I take a few prescription meds for it, but for whatever reason, it is NOT under control. I do NOT use salt, but some prepared foods have more than I should have (crab cakes)! I drink 1/2 cafe coffee, always no caffeine tea. Finally, here are my questions: Is it worth it to get all your vitamins and prescription drugs reviewed? I asked my Pharmacist, (and I offered to pay her) but, she said she did not have time. I have a "heady" feeling after I take my pills that lasts all day. Now, if I am home all day, I wait until almost lunch to take my meds. Probably wrong, but seriously wrong? Have to take them the same time each day? I have a new PCP since mine retired, and is not really helpful. Open to ideas! Happy New Year!!

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First things first.... this Chesapeake Bay girl makes her own crab cakes, mainly so I can see and taste the lump blue crab meat and not have it wasted with a bunch of salt and filler junk! (of course some Old Bay seasoning, but not enough to blow a gasket, and if the mayonnaise is adding too much sodium, then more is being added than needed to hold the precious crab meat together 🙂 ) I'm sorry about your pharmacist not helping - the last time I asked mine a question, he very nicely advised a website tool to check drug interactions of a new med with existing ones I was taking. I sure hope you get your new PCP up to task, they really need to help you. Thinking of you and hope you get answers.

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@dbeshears1

First things first.... this Chesapeake Bay girl makes her own crab cakes, mainly so I can see and taste the lump blue crab meat and not have it wasted with a bunch of salt and filler junk! (of course some Old Bay seasoning, but not enough to blow a gasket, and if the mayonnaise is adding too much sodium, then more is being added than needed to hold the precious crab meat together 🙂 ) I'm sorry about your pharmacist not helping - the last time I asked mine a question, he very nicely advised a website tool to check drug interactions of a new med with existing ones I was taking. I sure hope you get your new PCP up to task, they really need to help you. Thinking of you and hope you get answers.

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Oh dear, are you two both from the Chesapeake Bay area? I would know by your crab cake description, Debbie. I haven't seen a can of Old Bay in a long time. Those were the days.

My hope is that we carry our own weight in this battle with pain and discomfort. It may take me 6 months to finally decide to give up something because I don't really want to. Then 6 weeks later, I don't even remember what it was. Congratulations to all of you for doing your best.

Chris

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