Small Fiber Neuropathy

CBDs allowed me to get off Oxy. It works, but takes trial & error. I tried 12 before I found what I consider the best: Nightingale Remedies CBD Relief Cream out of Portland, OR. Online. It combines CBD with about a dozen pain relieving herbs and MSM for easy skin absorbtion.
I combine this with a CBD oral tincture (currently using Tommy Chong's which works well.)The combo not only relieves pain but had dialed back the extent of my neuropathy.
(I'm 75)

Wow there are lots of neuropathy related groups and discussions here. It is frustrating that neuropathy has so many causes and even more potential treatments. I am 46 years diabetic and had peripheral and autonomic (gastroparesis) neuropathy complications. My goal has been to control the diabetes before some more imminent life threatening complication takes me out. I eventually had a pancreas transplant and it like my own personal miracle. My diabetes was not cured but became manageable for the first time in my life. In my case the peripheral neuropathy did reverse. I had experienced numbness, tingling, burning, aching pain in my hands and feet. It caused difficulty with fine motor tasks. Some time after the transplant it just stopped. I have no explanation for it other than it is a God thing. My recommendation is to do what you have to do to control your diabetes and continue to look for pain management ideas. Those of you suffering with this are in my thoughts and prayers.

I am a 56 year old female who has been experiencing symptoms of neuropathy since February of 2021. My symptoms began with tingling/electrical/burning sensations that started in my one foot and then moved to both feet. Coincidentally, or not, I also had a strange marking/rash on my left calf, that did not itch and was not raised, that went away with time. The neuropathic symptoms traveled to my arms and hands. Sometimes all was tingling/burning and other times it would just be the feet or the hands. I also began to have diarrhea on a regular basis. Sometimes I would wake up with burning in my upper trunk. The symptoms may last five minutes or an hour. They would come and go. I was also having joint pain in my fingers and knees and my feet hurt when I first woke up.

I had multiple tests (blood work, colonoscopy, endoscopy for Celiac, Celiac panel, brain MRI, RA, Lupus, Lymes, metals, EMG/nerve conduction) and they all came back with nothing too significant. I did have low Vitamin D and taking supplements resolved the joint pain. I also had slightly elevated IgA (maybe 15 points over where it should be). My brain MRI had a few lesions but the neurologist was not concerned. My primary doctor had me go off Gluten.

My symptoms went away for awhile but they came back this April. I had been eating gluten again so I am now off of it again (3 weeks now) but the symptoms are still present.

I ran across this group and wondered if these symptoms sound familiar and if I could have small cell fiber neuropathy? My aunt and uncle (both 80) have neuropathy. I am interested in this groups thoughts. My neurologist felt dismissive so I will not go back to him.

I have small fiber neuropathy, as well as other conditions. I find mine is greatly affected by diet. I have removed foods that are neuroexcitatory in affect and find that this helps. For me, this means eating foods that are low in glutamate. I don’t have processed foods and avoid corn, soy, dairy, and gluten, as well as the nightshades. I stick to organic as much as possible.

Simce my neuropathy is worsened by stress, I practice meditation and do mild exercise; mostly yoga with YouTube videos, as well as walking.

I sometimes wear compression garments, particularly if a low pressure front is coming in, as that affects my neuropathy as well. I find that this often helps.

My default, when stress and/or neuropathic pain increase, is to go directly to breathing exercises. At various times, I do Buteyko and box breathing. I find that both are very effective at decreasing a neuroexcitatory response. This in turn decreases my burning and pain. I try to remember to breath to my belly throughout the day.

For me, it’s important to avoid becoming overheated or too cold.

This has required a lot of research and hard work, but it has become a matter of rote for me. With daily practice of the above, my flares have decreased appreciably.

Good luck! We’re all so different, but maybe some of this will help you.

Let me add that you may find that your changes do not need to be as inclusive as mine. My neuropathy started in the summer of 2020, and it took me a long time and adjustment to find things that helped and worked for me.

My daily pattern of “healing work” changes with the new things I learn.

Hi @kmst1994, Welcome to Connect. You will notice that we merged your discussion with another discussion on the same topic. If you click the VIEW & REPLY button at the bottom of the email notification it will take you to the Small Fiber Neuropathy where you can meet @kfrenc04, @acv, @julkun, @cehunt57 and other members discussing small fiber neuropathy.

The Foundation for Peripheral Neuropathy has some complementary and integrative therapies that you might find helpful here - https://www.foundationforpn.org/living-well/complementary-therapies/

I shared my neuropathy story in another discussion here - https://connect.mayoclinic.org/comment/310341/

Do you mind sharing what symptom of your neuropathy bothers you the most?

Hi @johnbishop, thanks for your welcome and response. I am still in without a diagnosis, my PC doctor told me to stay off gluten and the neurologist I went to spent a total of 15 minutes with me, didn’t look at the symptoms and timeline document I gave him, and said I may have conversion disorder (I am aware of what that is and would even be open to that option) but did not offer any neurological testing before coming to that conclusion; pretty disappointing. My most concerning symptom is the electrical/burning/tingling sensations that seem to come and go throughout most days. I also wake up to the burning sensation in my chest and arms at night and early in the morning. It started more than a year ago, went into some type of remission, and now is back. With this I also now have chronic diarrhea. I do not have pain (other than burning), loss of mobility, numbness, or weakness of the limbs. For this reason I was not sure if the small fiber neuropathy sounds like me. Any help or thoughts is greatly appreciated!

@kmst1994, The symptoms you describe sound very similar to Paresthesia.

"Paresthesia is numbness or a burning feeling that occurs most often in the extremities, such as the hands, arms, legs, or feet, but that can happen elsewhere in the body as well." --- What to know about paresthesia: https://www.medicalnewstoday.com/articles/318845

There is another discussion where you can learn what other members have shared about their symptoms and experience --- Paresthesia, abnormal sensations: https://connect.mayoclinic.org/discussion/paresthesiaabnormal-sensation/

Have you thought about seeking help or getting a second opinion at a major teaching hospital or health facility like Mayo Clinic?

@johnbishop I have an appointment with my PC in a couple of weeks and I will see what he says. I do think I will be making an appointment at Mayo to get another opinion. Question: do my symptoms fit with small fiber neuropathy?

Good morning. Numbness started in my legs very early on. Flutter also. Started when I was 29 years old when I contracted Mononucleosis. Now known as Epstein Bart Syndrome from what I’ve been told. Numbness has gradually moved through the years up my body. Not much pain. Hands feet and legs are very, very sensitive to cold. Lots of cramping in feet and legs. I’ve totally changed my diet. Now gluten free and no sugar. Eating foods that are supposed to help autoimmune system. Hopefully this will help. Hope this answers your questions.