What helps the symptoms of Small Fiber Neuropathy?

If you have small fiber neuropathy diabetes has nothing to do with it. I have it as well and I am not diabetic. I have the tingling in my fingers and toes and it has never gone away neither has the intense burning in my legs. I take Gaberpentin but I am in the process of switching to Lamotrigine. It’s a long process but my neurologist thinks it will manage my pain better. I have had many tests including genetic testing and they can’t find the source. While I have small fiber neuropathy, I have the autonomic type which affects the autonomic nervous system which affects normal everyday functions that we have no control over, ie, bladder, digestion, bowels, breathing.

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I have neuropathy definitely brought on by chemotherapy. It's in my feet. I also have something going on in my abdomen area and my head. All of it started after chemotherapy treatments; which I only had two treatments and my oncologist said that I couldn't handle anymore treatments. So they went ahead and did the mastectomy on my right breast with reconstruction now completed. What exactly is autonomic nervous system. My symptoms in the beginning were mainly with not being able to breathe properly, not being able to take deep breaths, which resulted in going to the ER many times. I would get very warm sensations and lightheadedness. Also, I had a tightness around my ribcage areas. This all got a little bit better over a few months. I had tests done at the gastroenterologist and went to see a thoracic surgeon and through all those tests, nothing was found to be wrong. The thoracic surgeon told me to have a discussion with my oncologist. I did some of my own research and on this Mayo Clinic forum I someone posting about neurotoxicity and that there are many clinical trials being done. Stated that oncologists really don't know how to take care of this. I saw that there are a few drugs that they may prescribe. I'm seeing my oncologist soon; so hoping he has something to say about why he hasn't mentioned anything about this possibly happening to some chemotherapy patients.

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I have neuropathy definitely brought on by chemotherapy. It's in my feet. I also have something going on in my abdomen area and my head. All of it started after chemotherapy treatments; which I only had two treatments and my oncologist said that I couldn't handle anymore treatments. So they went ahead and did the mastectomy on my right breast with reconstruction now completed. What exactly is autonomic nervous system. My symptoms in the beginning were mainly with not being able to breathe properly, not being able to take deep breaths, which resulted in going to the ER many times. I would get very warm sensations and lightheadedness. Also, I had a tightness around my ribcage areas. This all got a little bit better over a few months. I had tests done at the gastroenterologist and went to see a thoracic surgeon and through all those tests, nothing was found to be wrong. The thoracic surgeon told me to have a discussion with my oncologist. I did some of my own research and on this Mayo Clinic forum I someone posting about neurotoxicity and that there are many clinical trials being done. Stated that oncologists really don't know how to take care of this. I saw that there are a few drugs that they may prescribe. I'm seeing my oncologist soon; so hoping he has something to say about why he hasn't mentioned anything about this possibly happening to some chemotherapy patients.

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I tried heat and Epsom salts for the burning and crawly feeling in my feet, but it did nothing to help. However, I found a pair of soft flannel booties on Amazon that has a pocket on the outside of the sole that holds a thin jell packet. You freeze the jell packet, put it in the pocket and wear them to bed. They cool the burning in my feet and stop that awful crawly feeling. I love them.

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@d13, There is another discussion on the topic here - Chemo-induced Peripheral Neuropathy and Breast Cancer: https://connect.mayoclinic.org/discussion/neuropathy-11/ @staciej mentioned in a post that she watched the following video from the Foundation for Peripheral Neuropathy and thought it was very helpful.

Webinar: Chemo-Induced Peripheral Neuropathy
https://youtu.be/eNkDf9ezXFo

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Good evening @anya40. Thank you for introducing me to the soft flannel booties. Do you remember the manufacturer's name. Here's the problem.......I have icy cold feet at night not burning. I wonder if they might not have a pair that will warm up my feet. That is the way it seems to go....you have hot feet and I have cold feet and we both have SFN. What medications have you found helpful? Are you using medical cannabis?

May you be safe and protected from inner and outer harm.
Chris
PS....I think it is midnight now and so......Happy New Year!

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That is simply incorrect. Peripheral Neuropathy (PN) by definition is a disease of the periphery, i.e. the hands and feet. Small Fiber Neuropathy (SFN), in which only the small sensory cutaneous nerves are affected, can affect the entire body (and bodily functions one would not readily associate with neuropathy). Therefore, one could simply have PN, or conversely, SFN that is only affecting the periphery (where symptoms often begin). However without a biopsy, one cannot be sure which disease they have. If the symptoms remain in the hands and feet, a lack of confirmation is not a problem, as one would most likely treat and deal with the pain in the same manner. If the problems progress beyond the periphery, one is in a more difficult situation. Many of the full body debilitating symptoms (detailed below) of SFN mirror those of other serious diseases and without a biopsy, one could only assume they were a product of the SFN. The state of not knowing can create extreme anxiety. I have a confirmed case of SFN and still get extreme states of anxiety when a new pain or condition arises. However, even in many medical journals, the medical community often refers to the disease as one of the hands and feet, regardless if this is merely out ignorance or hubris. When Swedish did my biopsy, they sent it to a neuropathology company called Therapath for analysis. Their information on SFN (copied below) best describes the disease. One cannot read the following and think PN and SFN are even close to the same disease…

Therapath: Symptoms of sensory small fiber neuropathy include numbness, hypersensitivity, and spontaneous painful or annoying sensations called paresthesias. The latter can present as tingling, burning, freezing, stinging, stabbing, itching, squeezing, tearing, buzzing, aching, or electric sensations that fluctuate in severity. These sensations can occur anywhere in the body, including the feet, arms, legs, torso, scalp, face, or even the mouth.

Symptoms of autonomic small fiber neuropathy include abnormal sweating or temperature regulation, lightheadedness or fainting when standing up from hypotension or tachycardia, gastroparesis with bloating and constipation or diarrhea, incomplete bladder emptying or difficulty initiating a stream, sexual dysfunction from hypo or hypersensitivity, dryness and thinning of the skin, hair loss in the legs, and ridged or brittle nails.

Patients with rheumatological disorders can present with a variety of syndromes that can result from Small Fiber Neuropathy (SFN). These include musculoskeletal pain, muscle cramps, fasciculations, widespread unexplained pain, reflex sympathetic dystrophy/complex regional pain syndrome, burning paresthesias, and autonomic instability including orthostatic hypotension, postural tachycardia, or gastrointestinal dysmotility.

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John Bishop, that describes My SFN to a tea!
What kind of Dr best treats it?

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