Chronic Fatigue Syndrome and Small Fiber Neuropathy: What helps?

Hello @jeanniem. You will notice that I have included your post in the Autoimmune Diseases Group as well as here in the Neuropathy Group to allow more members to see your post and to participate in a discussion.

As well, if you are interested, there is a specific discussion on Chronic Fatigue Syndrome if you would like to find support specific to that diagnosis at any point: https://connect.mayoclinic.org/discussion/help-with-chronic-fatigue-syndrome/

I did also find this older discussion on post-viral neuropathy that I wanted to share.
-Post-Viral Neuropathy:
https://connect.mayoclinic.org/discussion/post-viral-neuropathy/
Might you recall the article you read linking the two diagnoses so you can share for those interested in reading?

Thanks for the connection. It is interesting to think that the antibiotics could have contributed to the problem as well as the viral infection. The whole thing has certainly put me in the category of a medical mystery. At one point, I was dx with Lupus due to symptoms combined with +anti-RNA. After a few years, my blood tests went back to normal and my symptoms lessened. I had occasional smaller "flare ups" until about 4 years ago. I have been tested for everything, I think, but landed on small and large fiber neuropathy, confirmed by an EMG and 2 punch biopsies.

Here is a link to one of the articles about the study. It is fairly recent and I don't know if they have been able to replicate the results. Warning, you might have to create a free account to read the entire article.
https://www.medscape.com/viewarticle/936745#vp_1

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!

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?

I just turned 62. I am so different from the person I had prepared to be at this age. After 7 years of chronic pain and fatigue, I am starting to lose my fight. My rheumatologist insists that I have fibromyalgia, and punch biopsy confirms SFN also. How can this happen? I won’t go through how active I was even just a few years ago. Now the least bit of exercise or activity (gardening, shopping) buys me an evening of relentless pain in my back, knees and hips. My muscle tone is diminishing, and I’ve gained weight. Since it’s an invisible illness, it’s hard for friends to understand.
Today I volunteered at the animal shelter. I was using a stepladder to clean a cat kennel. Up and down, with supplies and food. It was only two steps. It was so incredibly painful, and tonight I’ve been crying out with pain every time I get up from my chair.
Trying to figure out how to keep adjusting and adjusting to my changing future. Sorry to sound so negative, but I’m worn down right now.

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

Hello Chris, I'm going to discuss and try medical cannabis. Can you please let me know what strength and cbd/ thc is helping you, and how long it might take to feel pain relief. Do you take any supplements too? Or just cannabis?
Thank you!

Good evening @sharka, it is wonderful to meet you on Connect. You've been quite busy since your arrival on July 22. As I gather.....you have idiopathic SFN (small fiber neuropathy). How long have you been trying to get a good handle on pain control?

My introduction to medical cannabis was facilitated by a surgical nurse friend who took me under her wing and started me on a small dose in a vape pen. I was blown away at how much relief I was able to receive just from the testing. Besides that I am highly allergic to opiods and many other standard medications.

I quickly realized that with Maggie's help, I might have a chance. That was some time ago way before CA legalized recreational as well as medical marijuana.

To get this going, you might want to tell me the state you live in. I will be happy to check out all of the laws and procedures in your hometown. If possible it is best to start with tinctures and topicals......save the edibles and beverages for a party someday. If available, it is helpful to request a meeting with a pharmaceutical specialist in the dispensary, who helps folks select their first cannabis. Therefore it is important that you make sure that he/she knows what other medications you are taking and with what medical conditions you are dealing.

Essentially, you will soon become your own prescriber. And for that reason, we have the following reminder......." you can always have more.....you can never have less". Just keep that in mind.

The tincture bottles have droppers with measuring marks (e.g. mg). So if you are using a 3:1 CBD/THC then you know that there will be 3 times more CBD than THC in whatever amount you draw into the dropper. With some products, especially topicals, you might have two options......a 3:1 CBD/THC for chronic pain and a 1:3 CBD/THC for acute pain.

To get started, here is a link to a new publication about dosing.
https://www.projectcbd.org/guidance/cbd-dosing
Why don't you give me an update after reading the article? Then it may be time to head on up the hill.

Thanks for your interest and I hope this is a good start. I will now take the top off my nightcap.
May we both have comfort and ease tonight.
Chris

Hello Chris! Thank you for the info! I'm going to see cannabis prescribing doctor next week. Still thinking whether to go, or cancel the appointment, it's expensive, the appointment and canabis too. I'm in Australia. Fighting sfn for about five years, about three years ago I've started with R- alpha lipoic acid and acetyl L carnitine, and magnesium, D and B complex to get some relief. Can't use standard medication too, got allergic reactions, so scared of anything drs. Prescribing, wouldn't touch lyrica, etc.
Not sure if I can drive, if I take cannabis in the evening before. In my state I can't drive with THC test positive. But medical canabis is legal.
Even bought from USA from maxcbd wellness, but not sure if I'm OK to drive, so stopped taking, before I could experience any relief from pain.
Also, I've heard, that cannabis can take some vitamins and minerals, like magnesium, do you take any supplements to replenish?
Any advice is highly appreciated 🙏! I'm hoping to achieve greater results from cannabis than supplements.
I'm hoping to reduce supplements and take just cannabis for the pain.
And thank you for the article, going on to read it!
Would you possibly know of any reputable companies who post to Australia? Only found maxcbd wellness, quite expensive though.

And Chris, just read leaded hemp from above link, are you concerned about pesticides and heavy metals? That's really bad for neuropathy!
So many good information in the link, thank you again 🙏 😊!