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New to the group - but have chronic fatigue?

Posted by hkgood @hkgood, Nov 11, 2025

Hi there,

I was diagnosed at Mayo with chronic fatigue and central sensitization back in August. I am new to Mayo Clinic Connect; the internal general medicine staff recommended this group, as there isn't a specific one to chronic fatigue and the two illnesses have similarities. They said people with CF have joined the group and find it helpful.

Are there others here who have chronic fatigue and/or css, or who have both? I am wondering, generally, what recommendations and encouragement some of you may have for how to get through this time. I have never gone through something so difficult in my life?

Thankfully, many of my symptoms are improving since the diagnosis (I was very sick for one year without diagnosis), but I find myself struggling with a lot of grief lately (over loss of job, independence, finances, etc.). I feel very alone in this journey and am just hoping to connect with others.

All my best,
H

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

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kikibiree | @kikibiree | 5 days ago

Hello,
I think I have had chronic fatigue for several years, but I was able to push through. But since I came back from an overseas in February, I have been really struggling with fatigue. I used to exercise a lot, but I cannot right now
My blood work is fine.
I started taking some supplements: women vitamins, CoQ10 and NADH. Do any of you know about these? Do they help?
I'm also seeing a therapist and an acupuncturist. I'm currently on an emotional rollercoaster. Today was really hard without a break from the fatigue. Any help out there?

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jimscoma | @jimscoma | 5 days ago

I just started on this journey myself and was pretty depressed and still struggle from time to time.

Though I haven’t started any therapy yet, I can tell you what has given me hope of a brighter future.

Motorcycles have been a hobby and passion of mine for over 40 years. With the fatigue and other issues brought on by ME/CFS and Fibromyalgia, I found myself unable to ride or work on my motorcycles for over a year. Worrying that I may never be able to return to my passion, I decided to Google famous racers, engineers, etc. that experienced the same diagnosis and found their way to get well enough to continue in some capacity or another.

Find someone you admire who shares a passion with you that is also inflicted and found a way to make their life work. Remember that life is fluid, it is constantly changing. We must let go of our rigid expectations for ourselves and be open to reinventing ourselves to fit the moment we’re in. Once we learn how to do that, we never stop growing.

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daisy17 | @daisy17 | 5 days ago

A few years ago I was diagnosed with fibromyalgia, after years of doctoring trying to find answers for my symptoms, which included severe insomnia. Finally, I found LDN low-dose naltrexone, used off-label. It's been a life changer for me. It's also being used for chronic fatigue syndrome. Here's an article about it. I'd be happy to answer any questions you might have, and there are posts in this support group about it.
https://www.verywellhealth.com/low-dose-naltrexone-ldn-for-fibromyalgia-cfs-716070
You have to get it from a compounding pharmacy and it's not covered by insurance. Mine costs $115 for a 3-month supply.

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salpuck1979 | @salpuck1979 | 21 hours ago
In reply to @4corazon "I have both, fibromyalgia and chronic fatigue, now called Myalgic Encephalomyalitis. The fatigue is the worst,..." + (show)
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I have both, fibromyalgia and chronic fatigue, now called Myalgic Encephalomyalitis. The fatigue is the worst, in my opinion. I can take something for the pain, but nothing seems to help the fatigue. So I empathcize. I do have a NP who herself had/has CF but is 90% better now, after trying various things. She is in Flagstaff & follows the same protocols as the Bateman Clinic in SLC, which treats only fatigue disorders, like fibro, ME/CFS, Long Covid. so far there still seems to be no treatment that works for me. I am retired, but started suffering shortly prior to retirement & so had to give up my work as a nurse. My decline has been steady since. Now I cannot clean house, cook, shop. Hubby does all that, or we hire a little help. Most days I can do a short slow walk around my neighborhood, some days I cannot even do that but I do try as I know it is very bad for my heart to not exercise at all. I do love books so they fill my time.

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@4corazon ….. Thank you for sharing ! I sleep a lot & I’m still very fatigued !! I try to walk about 5 days out of 7.
I don’t feel like cooking or doing much of anything. My husband & I are retired & he’s on the Heart Transplant List @ a hospital in Ohio. I use to like to travel, shop, visit family but that’s changed in about the last 3 years. I also just had a Pacemaker put in !

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4corazon | @4corazon | 8 hours ago
In reply to @salpuck1979 "@4corazon ….. Thank you for sharing ! I sleep a lot & I’m still very fatigued..." + (show)
Profile picture for salpuck1979 @salpuck1979

@4corazon ….. Thank you for sharing ! I sleep a lot & I’m still very fatigued !! I try to walk about 5 days out of 7.
I don’t feel like cooking or doing much of anything. My husband & I are retired & he’s on the Heart Transplant List @ a hospital in Ohio. I use to like to travel, shop, visit family but that’s changed in about the last 3 years. I also just had a Pacemaker put in !

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@salpuck1979 I have a pacemaker also. Plus newly diagnosed with congestive heart failure. Really didnt need anything else to increase my fatigue! Fibromyalgia & ME/CFS are enough!
I walk a few blocks most days, using my rollator. Hubby usually is with me. Only 3-6 blocks. I have a lot of insomnia also. I try to avoid sleeping during the day but just isnt always possible.
I dont cook much either. Only really simple stuff. And some Amy's frozen meals, which I can only eat 1/2 per meal due to the amount of sodium. I hope you have a good day.

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jeannesf1 | @jeannesf1 | 6 hours ago

Oh wow. Im so sorry, the fatigue is awful but good to hear you get out to walk even if it’s a few blocks! It seems like many is this group have pacemakers. Does anybody know Is there a connection between having fibromyalgia and needing a pacemaker?

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