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Chronic Fatigue Syndrome and Small Fiber Neuropathy: What helps?

Posted by jeanniem @jeanniem, Mar 15, 2021

I read an article recently about the possibility that CFS is connected in some way with SFN. I find this interesting because my first dx was CFS and I recently had two punch biopsies done that both showed SFN. I am 95% certain my CFS was triggered by some horrible virus I had (3 rounds of antibiotics didn't touch it and I couldn't go back to work full time for a good 6 months even after I was "better"). Would this indicate that neuropathy could be triggered or "woken up" by a viral infection? Anyone know any good research articles on this topic? Inquiring minds. 🙂

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

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obackus | @obackus | Sep 13, 2023
In reply to @chungaz "I’m 50 and have been diagnosed with autonomic dysfunction and small fiber neuropathy and am non..." + (show)
Profile picture for chungaz @chungaz

I’m 50 and have been diagnosed with autonomic dysfunction and small fiber neuropathy and am non diabetic. I feel my condition getting worse but the fatigue is ruining what little bit of enjoyment I have left. What can I do to help this?

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I also have SFN with autonomic dysfunction. Have you been tested for rheumatology issues? You may also have an immune issue that is causing extreme fatigue. I had the same issue and found I have RA, Sjogren's, and CVID on top of the SFN which caused me great distress. I would suggest seeing your Primary to have further testing to see if there is something else. Like me, the drs were looking for one problem but I actually had multiple problems.

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chungaz | @chungaz | Sep 13, 2023
In reply to @obackus "I also have SFN with autonomic dysfunction. Have you been tested for rheumatology issues? You may..." + (show)
Profile picture for obackus @obackus

I also have SFN with autonomic dysfunction. Have you been tested for rheumatology issues? You may also have an immune issue that is causing extreme fatigue. I had the same issue and found I have RA, Sjogren's, and CVID on top of the SFN which caused me great distress. I would suggest seeing your Primary to have further testing to see if there is something else. Like me, the drs were looking for one problem but I actually had multiple problems.

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Yes they’ve tested for that. I forgot to mention I have dystonia also. I was misdiagnosed with MS at first. Then like you they found out it was several diseases not just one.

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obackus | @obackus | Sep 13, 2023
In reply to @chungaz "Yes they’ve tested for that. I forgot to mention I have dystonia also. I was misdiagnosed..." + (show)
Profile picture for chungaz @chungaz

Yes they’ve tested for that. I forgot to mention I have dystonia also. I was misdiagnosed with MS at first. Then like you they found out it was several diseases not just one.

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I also have been extensively tested for multiple demyelinating illnesses such as MS, NMO, CIPD etc. Still could be a possibility for me. Going through this yet again:( Good luck to you!

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chungaz | @chungaz | Sep 13, 2023
In reply to @chungaz "I’m 50 and have been diagnosed with autonomic dysfunction and small fiber neuropathy and am non..." + (show)
Profile picture for chungaz @chungaz

I’m 50 and have been diagnosed with autonomic dysfunction and small fiber neuropathy and am non diabetic. I feel my condition getting worse but the fatigue is ruining what little bit of enjoyment I have left. What can I do to help this?

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Thank your for your reply’s. Good luck to yourself.

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Amanda Roe | @amandajro | Sep 18, 2023
In reply to @chungaz "I’m 50 and have been diagnosed with autonomic dysfunction and small fiber neuropathy and am non..." + (show)
Profile picture for chungaz @chungaz

I’m 50 and have been diagnosed with autonomic dysfunction and small fiber neuropathy and am non diabetic. I feel my condition getting worse but the fatigue is ruining what little bit of enjoyment I have left. What can I do to help this?

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Hello @chungaz and welcome to Mayo Clinic Connect. I am sorry that your fatigue is impacting your life so significantly.

You will notice that I have moved your post into an existing discussion on a similar topic:
- Chronic Fatigue Syndrome and Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/chronic-fatigue-syndrome-and-small-fiber-neuropathy/

What course of action/treatment has your neurologist suggested following diagnosis?

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bowersra | @bowersra | May 5, 2024
In reply to @sswin "I was just recently diagnosed with SFN. Non-diabetic and no autoimmune disorders found so far. I..." + (show)
Profile picture for sswin @sswin

I was just recently diagnosed with SFN. Non-diabetic and no autoimmune disorders found so far. I have been dealing with this for approximately 5+ yrs. My first thought was I had MS because of the brain fog, fatigue, dizziness, sweating, leg and feet pain, tingling, and numb sensations. My brain MRI revealed scattered lesions, but remaining spine was clear and so was Lumbar Puncture. My neurologist said the lesions were not indicative of MS. Some of the blood test came back with some abnormalities but my neurologist doesn't seemed concerned. I had to discontinue working because of the chronic fatigue, and getting worse. This is so NOT me. I want to do projects around the house, watch my grandkids and enjoy retirement. I just don't have the energy! I do one thing after getting up in the morning and 2 hours later I need to take a nap. And its like 3 or 4 hour nap.
Just want to know is this normal with SFN? Does anyone else experience this? Should I get a second opinion from a different neurologist?
Thank you for listening and any advice would be greatly appreciated.
God bless you all!

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I deal with this same fatigue. I can even set and sew. The concentration isn’t there. I just been said I have SFN with trying to get answers for 12 years.

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madnar0019 | @madnar0019 | Feb 21 9:20pm
In reply to @sswin "I was just recently diagnosed with SFN. Non-diabetic and no autoimmune disorders found so far. I..." + (show)
Profile picture for sswin @sswin

I was just recently diagnosed with SFN. Non-diabetic and no autoimmune disorders found so far. I have been dealing with this for approximately 5+ yrs. My first thought was I had MS because of the brain fog, fatigue, dizziness, sweating, leg and feet pain, tingling, and numb sensations. My brain MRI revealed scattered lesions, but remaining spine was clear and so was Lumbar Puncture. My neurologist said the lesions were not indicative of MS. Some of the blood test came back with some abnormalities but my neurologist doesn't seemed concerned. I had to discontinue working because of the chronic fatigue, and getting worse. This is so NOT me. I want to do projects around the house, watch my grandkids and enjoy retirement. I just don't have the energy! I do one thing after getting up in the morning and 2 hours later I need to take a nap. And its like 3 or 4 hour nap.
Just want to know is this normal with SFN? Does anyone else experience this? Should I get a second opinion from a different neurologist?
Thank you for listening and any advice would be greatly appreciated.
God bless you all!

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@sswin
I too have CFS (25yrs now) and SFN diagnosed in 2024, but the worst symptoms I have come from the fatigue. It’s just so debilitating… My neurologist has been working with me to find some kind of relief, but nothing is working yet. Tried IVIG and had a migraine that lasted 4 days with one day of vomiting every half hr until there was nothing left in my stomach— awful!
You didn’t mention this, but do you experience that “Fight or Flight” feeling in your chest during a CFS flare? I get this jumpy flutter like feeling in my chest, but it’s not a panic attack just a jump and a flutter. I’m more aware of it when I’m having a flare and laying still in bed, I’m interested to see if someone experiences this too. Good Luck with the fatigue, I certainly know how you feel.

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