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Please Explain Small Fiber Neuropathy?


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Can someone please explain small fiber neuropathy? How is it diagnosed? What is the treatment? How does it relate to POTS?

My QSART screen was abnormal. Does this mean I have SFN? I have a lot of episodic (horrible) pain and I cannot feel scalding water on my feet, sometimes on my fingers. Will Dr. Grubb or Beverly take note of these test results? Will they re-test me? Sorry for being so dense and for posting so many questions. I'm feeling a bit more desperate and brain foggy than usual this afternoon.

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Yes, I have it, it is primarily hitting my autonomic nerves, thus my pots and orthostatic hypertension w/syncope. Most first think peripheral neuropathy (burining/numbness of the feet and legs), but it effects the autonomic nerves too, like cardiac, gastro, temperature, sweating and the nerves that contract the blood vessels on standing. Mine was by skin biopsy, but Qsart also is diagnostic for it too.

I told dr. Grubb about my SFN, it factored into his diagnosis and he had my catecholamines both resting and standing done, which showed a big jump in norepinpherine on standing. Norepi also contracts the blood vessels on standing, kind of like a back up system when the nerves in your vessels fail to do it. That then causes the standing hypertension. He put me on labetalol 100mg (low dose) short acting, cause I also drop when I lay down. He didn't disagree with my neuro treating me with IVIG, and since then we found out I have low immunity which my insurance will pay for. If you just have small fiber nerve damage IVIG is off label, but if any of your large fiber nerves are involved too, then it is approved, by most insurance.

I think he will try to treat the symptoms HR/BP with his list of drugs, which is better then nothing. But, pots and SFN can be called secondary symptoms when caused by another underlying condition. It is important to rule out all secondary causes, because treatments vary depending on what the cause is, and in not treating the cause, you may become sicker. Which is what happened to me.

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Hopefully, he will help you with supplements, they did a wonderful job for my feet! My POTS is Autonomic Neuropathy so I have been doing great by helping the nerves get what they need.

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Dear arizona girl,

Your reply is a godsend to me and I feel like the curtain has been lifted. I finally get it! You have no idea. . . . My illness initially began with POTS-like symptoms and severe shooting, burning pain in my toes. I've been battling this for decades with no resolution, and my large fiber nerves have been involved for many years (also clinically documented). Norepinephrine is elevated. I have hypertension on standing. I am a pile, but I'm hopeful.

Thank you for the concise information.

Tearfully Thankful,

Victoria

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Sally,

Thank you for this information. I will do anything to be mobile again! I'm pretty much confined to my home, with the exception of having a good day here and there. Is this common with Autonomic Neuropathy? To reach a point where you just can't "go" anymore? When I do go out I pay for it with excruciating pain, etc., sometimes for two days. I wonder if I'm aggravating my nerves by desperately trying to be healthy? I was in a power wheelchair for a while, but we couldn't afford a van to put it in. Oh, the pitfalls and perils.

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Victoria,

I'm the same way. Sometimes my hands and feet hurt so badly that I can't stand for very long or walk very far. Sometimes a heating pad will help my hands, and I also take Lyrica for the pain. This helps a little, and there are other pain killers out there that may enable you to do more. Alternative medicine-wise, there's Alpha Linoic Acid, but the jury is still out on that one. It certainly doesn't hurt to try, though. I've recently gotten some, and we'll see how it goes. I'll let you know!

Cheers,

J

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The correct amount of ALA and good brands help many people with neuropathy from Diabetis or whatever reason. My doctor tells me the amount and best brands. She looks into each brand for purity.

Nerves use a lot of energy and I am working hard to repair them. I read a lot about how to do that. Keeping good blood sugar level is important. Staying away from toxins. I am trying to think of all of the notes I have taken from reading.

Antioxidents like Glutathion, Alpha Lipoic Acid, etc are great. I take Vit C, Vit E, Lipoic Acid Supreme, NAC, Liposomal Glutathione and B vits.... I "feed" the nerves and help keep them repairing.

This is all paying off for my POTS. I have CFS too, so antioxidents and all of my other suppelments are good for overall health.

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I'm sorry, Jana. Between the two of us it will be a miracle if we get together! Mine started in toes, moved to hands, and now in my back, neck and shoulders. I'm on a heating pad constantly. Changed care to the UIHC and got a call yesterday so they could tell me they're yanking my pain meds in August. That can't happen. I think I'll have to sit on this info until I see Dr. Grubb. I don't want to mask anything. But this is really good information. Thank you so much!

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I have medically documented muscle atrophy (guessing from the large fiber problems), but I was shamed for it and told I needed to do cardio exercise. My skin is very dry and shiny on my feet, legs, hands and arms. Physicians haven't taken note of my shiny skin. But I visit an 88-year-old woman with dementia in a nursing home and she brings up my shiny skin at every visit! She always asks what I use to make it look so pretty. What a doll she is, she's pure joy to visit with.

Anyway, I just read this about Autonomic Small Fiber Neuropathy: The skin over the affected area may appear atrophic, dry, shiny, discolored, or mildly edematous as the result of sudomotor and vasomotor abnormalities. Interesting.

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Can I ask when you guys get the burning pain in your feet? Mine only appears at night when laying bed. Not sure if that fits with SFN.

I wish I could remember if I had it at night in the beginning. Mine is worst when I have shoes on or if I'm standing/walking.

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Based on the QSART, I do have SFN, but I really don't suffer from tingling pain in my feet/hands much. However,I do suffer from terrible pain in both ankles to the point that they feel extremely swollen, though they aren't. Even 2 50mg of Tramadol doesn't ease the pain and I'm often up most of the night tossing and turning because I can't get comfortable.

I do suffer from moderate/severe fibromyalgia as well. Since I don't suffer from pain in my feet, do you think this pain in my ankles is due to the fibromyalgia and not small fiber neuropathy?

Do any of you use a topical patch for pain?

Thanks,

Bev Ray

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I get burning pain at night, after exercise, or in any type of heat or stress.

Your pain is similar to mine in the sense that any minor activity such as bending, lifting, squatting, walking stairs; heat and stress will also provoke it. It used to be confined to my feet, legs, hands and arms, but has spread throughout my body now. Through the years the burning has been replaced by shooting pain and deep aching or boring pain.

Bev Ray, for many years I'd feel swollen in the ankles when they weren't, but I don't have fibromyalgia.

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I also stopped eating gluten. It can have an effect on the nervous system in sensitive people. You can't figure out if you are a bit sensitive so I just stopped. Anything to help my nerves! :)

I stay away from toxins when possible. Everyone sould make sure thier blood sugar is good.

No, I do not take prescriptions. Have not ever taken Neurontin.

Do all the reading you can about nerves and healing. Many doctors do not know how to help. Thankfully, I have an integrative MD that does.

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Many doctors do not know how to help. Thankfully, I have an integrative MD that does.

So many things doctors don't understand and don't know how to treat them. Would like to find a local integrative MD, but it isn't in my budget. :(

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