← Return to Chronic Fatigue Syndrome and Small Fiber Neuropathy: What helps?

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@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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Replies to "I was just recently diagnosed with SFN. Non-diabetic and no autoimmune disorders found so far. I..."

Welcome @sswin. I think many members like @rwinney @artscaping @julbpat @swartzki and others with small fiber neuropathy will relate to your major fatigue. I moved your post to this existing discussion where @jeanniem was looking into research related to SFN and chronic fatigue.

- Chronic Fatigue Syndrome and Small Fiber Neuropathy: https://connect.mayoclinic.org/discussion/chronic-fatigue-syndrome-and-small-fiber-neuropathy/

As others will attest, fatigue is normal. Do you feel that your fatigue is helped with napping? Or is it a fatigue that sleep doesn't remedy?

Good evening @sswin, and may I also welcome you to Connect. Thanks also to @colleenyoung for her introduction to several folks who can share their stories. And......we are all a little different. Rachel, @rwinney, will be able to relate to your fatigue issues I am sure.

I was diagnosed with SFN about 9 years ago. At that time, my brain MRI revealed aging lesions but nothing that at the time was threatening in any way. It was definitely the pain....the pain....the pain. I started with Gabapentin which had to be reduced because of side effects. And the remaining dosage was moved to nighttime because it would help control the pain until about noon the next day. And that worked for a while.

About five years ago I discovered medical cannabis and it has taken over the role of pain control for my SFN. It was doing reasonably well. However, I turned 80 this year and I think my prize was an increase in my level of fatigue. Unfortunately, I began to take naps during the day and then couldn't sleep at night. So....I have to be careful with how I plan my days. If I have an MFR (myofascial release therapy) session like today, then, momentarily the pain and fatigue increase. So I usually sleep a couple of hours after my session, take another dosage of cannabis tincture and enjoy the evening.

Sporadically, I will have targeted pain episodes. Last week, I spent two days pretty much in bed fighting "quad" pain in my left leg. Ice, elevation, and MFR brought me back to normal after another session. So tonight I am being happily productive.

We each have to discover our own way......knowledge is power.....and that is what you find by sharing on Connect.

What medication or supplements do you find helpful?

May you be safe, protected, and free from inner and outer pain.
Chris

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.