Small Fiber Neuropathy burning?

Posted by katec @katec, Mar 22, 2020

Hi everyone! I hope you’re all doing well with the quarantine. We are hanging in there!!

I have a question about small fiber neuropathy. As you know, my 15 year old son has it. His only symptom so far (4 years now) has been severe pain on the bottoms of both of his feet. Today he’s complaining of a burning sensation when his shorts touch a certain place on his thigh. I know SFN is sometimes called the burning syndrome, but I thought it was more of a widespread type of burning, not just a small spot (size of an iPhone). Have any of you experienced this before? Just the patchy burning? Thanks so much!!

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

Rachel, Volunteer Mentor | @rwinney | Mar 20 9:14am

In reply to @wmacgill11 "I have the sunburn sensation as well along with very tight skin; has anyone been prescribed..." + (show)

Yes, Gabapentin and Pregabalin (Lyrica) are typically first lines of defense when it comes to nerve medications. Are you working with a neurologist?

alfred3 | @alfred3 | Mar 21 10:39am

Hallo,
For what stands DRG and IVIg. I live in Germany and
don't know this abbreviations. Thanks

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John, Volunteer Mentor | @johnbishop | Mar 21 11:19am

In reply to @alfred3 "Hallo, For what stands DRG and IVIg. I live in Germany and don't know this abbreviations...." + (show)

Welcome @alfred3, I think DRG stands for Diagnosis Related Group. "Intravenous immunoglobulin (IVIG) is a pooled antibody, and a biological agent used to manage various immunodeficiency states and a plethora of other conditions, including autoimmune, infectious, and inflammatory states. The ultimate goal of this therapy is to normalize a compromised immune system." - https://www.ncbi.nlm.nih.gov/books/NBK554446/.

Have you been diagnosed with neuropathy? Do you mind sharing more about your diagnosis and symptoms?

alfred3 | @alfred3 | Mar 21 1:42pm

In reply to @johnbishop "Welcome @alfred3, I think DRG stands for Diagnosis Related Group. "Intravenous immunoglobulin (IVIG) is a pooled..." + (show)

High @johnbishop,
I suffer since about 4 years by an idiomatic polyneuropathie. The main
symtomatic are burning feets, sometime icy cold burning, sometimes fire hot
burning. Specially in the night. By the day I have a metatars allergy on
the left foot and a heel spur on the right foot. I think both sicknesses
are caused by a foot lenghness difference of 2cm by birth. Before I got the
neuropathy I have done some heavy paving work at home, which I was not used
by my age and white collarjob.

The consultations by the doctors were very disappointing by trying to
prescribe me antiepileptic/antidepressive medicine, which I refused. Now I
try to check out vitamines, B1, B3, B6, B12 and R-alpha Liponacid and
Acetyl-L-Carnitin in high dosages of the orthomolecular medicine. I have
some hope in Niacine, because it influences the small blood capillars.

John, Volunteer Mentor | @johnbishop | Mar 21 2:39pm

In reply to @alfred3 "High @johnbishop, I suffer since about 4 years by an idiomatic polyneuropathie. The main symtomatic are..." + (show)

The Foundation for Peripheral Neuropathy has a great list of complementary and alternative neuropathy treatments including a list of supplements that have shown to help neuropathy here - https://www.foundationforpn.org/wp-content/uploads/2024/11/Complementary-and-Alternative-Treatments.pdf.

Since you mentioned you have idiopathic polyneuropathy, I'm wondering if you might find these two webinars from the Foundation for Peripheral Neuropathy on CIDP (Chronic Inflammatory Demyelinating Polyneuropathy) helpful:
-- FPN Webinar: CIDP, From Soup to Nuts, with Sami Khella, MD: https://www.youtube.com/watch
-- FPN Webinar: New Horizons in CIDP Therapy: Exploring Current and
Future Treatments: https://www.youtube.com/watch

alfred3 | @alfred3 | Mar 22 11:09am

Dear John,
thank you for the very intersting references. I am now busied for the next weeks to study them with great interest.

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sc2525 | @sc2525 | Jul 12 7:35am

I have no rash. Pain started in mid back and moved to front under chest area. Now the pain has moved to the center of my back and it seems to be on my spine. Any sudden movement causes excruciating pain which is sudden but stops when I change position. I usually scream due to the intensity. Also having pain in both knees and vague numbness down my legs … they feel very strange. I am into day 8 of symptoms and day 5 on Valtrex. I am seeing no improvement except no longer tired. Is this internal shingles? There seems to be limited info on this condition …and I’m uncertain where to turn and concerned this could take a worsening turn. Has anyone here been to an infectious disease dr or other specialist to treat this. Also I’m interested to hear of others have experienced similar issues and how they dealt with it .

Has anyone here seen an infe

John, Volunteer Mentor | @johnbishop | Jul 12 8:55am

In reply to @sc2525 "I have no rash. Pain started in mid back and moved to front under chest area...." + (show)

Hello @sc2525, Welcome to Connect. Sorry to hear that you are not seeing any improvement since starting treatment for internal shingles. I did tag you in another older unanswered discussion where a member mentioned the condition for their mother but didn't get any responses. There are members who have mentioned internal shingles in different discussions and it might be worth scanning through the member comments to see if you see anything that is similar. Here's a link to the search results - https://connect.mayoclinic.org/search/comments/.

Mayo Clinic has some information that does mention you can have shingles pain without a rash - https://www.mayoclinic.org/diseases-conditions/shingles/symptoms-causes/syc-20353054.

Have you had a chance to talk with your doctor about the Valtrex not helping with the pain?