New to the group - but have chronic fatigue?

Hello @hkgood,

Welcome to Mayo Clinic Connect. I'd like to invite @rwinney to this conversation. I'd also like to invite @madnar0019, @rayjay535353 and @jan64 to this group as well as all have talked about being diagnosed and living with CFS and/or CSS.

@hkgood, you mentioned you were diagnosed at Mayo Clinic. If you are comfortable sharing, was there a management plan discussed and has that helped with some of your improvement since your diagnosis?

Welcome @hkgood . I’m so sorry to hear about your new diagnosis. Am I correct in assuming your diagnosis of Chronic Fatigue is ME/CFS? I have had ME/CFS (Myalgic Encephalomyelitis/aka Chronic Fatigue Syndrome) and fibromyalgia for almost 40 years.

I totally understand how difficult it is to come to grips with this diagnosis, the many lousy symptoms it produces, and also the grief over the losses that accompany such an illness.

ME/CFS can take many turns as it can wax and wane over the years. For me, I was the sickest (mostly bedbound) the first 3 years but later improved to about 70% for quite a long time. I was able to work part time from home (self employed), travel, enjoy concerts and socializing, etc,

I have personally known several people who fully recovered after 2-3 years.

Life does go on, even though it’s not what we expected. The best advice I can give is to pace your activities carefully around your energy budget and don’t worry about what other people think when you can’t do the things you used to do. It’s just impossible for them to really understand. Learn to enjoy what I call “Life in the slow lane.” I took up new hobbies/ interests at home that have been very rewarding that I never would have otherwise. And also, the people who truly love you will still love you. ❤️

For more information and support, the SolveMe Initiative is an excellent source. They have great articles you can share with others to help them try to understand. https://solvecfs.org/me-cfs-long-covid/

Also, the Phoenix Rising Forums has a ton of lively conversations by patients about research, coping, etc. https://forums.phoenixrising.me/

Please know that are not alone! And please know that in spite of this, it is possible to to adapt to a new normal and be happy again. Wishing you all the best!

I am so sorry about what you are going through. It’s hard and can feel isolating. I struggle with fatigue and sensitization. Have you seen integrative medicine at mayo? I waited to see them and wish I did it sooner. They take a deep dive in your lifestyle and make suggestions. I was told I’m trying to do too much, which was liberating to hear from a doctor. It’s a positive conversation with a lot of compassion. I’m working on my pacing and feeling better. We need more rest so our brains can reset. Good luck! You’re in the right place.

So sorry to hear about all your issues. CF is a very difficult issue and I am also recently diagnosed, but am not sure the PCP is correct. Due to all the research, Mayo clinic, Cleveland clinic, NIH and the Bateman Horn Center ( more specific center for CF research), along with other sites. I don't always believe all I read online, but try to stay with more reputable sites. There is a lot out there! I always go back to my doctor to clarify and verify what I read. I personally don't believe I fit the criteria for that diagnosis and now have an appt with a neurologist at the Cleveland clinic here in Florida for a second opinion. This is one of several support groups and another post listed others. I hope you can find more information and some relief. Sadly no cure, but there are some ways to cope with this chronic condition. Wishing you the best.

Hi H, @hkgood. I'm sorry that you struggle with symptoms relating to CSS and chronic fatigue. It must be very frustrating. How wonderful though that you've been diagnosed and know what you're dealing with. Learning about the why behind the what makes a difference. Now it becomes more about working on finding acceptance and implementing a management plan.

I have CSS also and am a graduate of the Mayo Clinic Pain Rehabilitation Center. @db72 nailed it in this earlier response -

"Life goes on, even if it's not what we expected".

As sad as it feels in the moment, a diagnosis doesn't mean the end, it means a new beginning of looking at life through a new lens. Recognizing there is still life to live even if it looks different than what we imaged. I had a difficult time with this which is what brought me to the PRC.

The PRC teaches ways of moderating and modifying physical activity through proper ergonomics and exercise, taking care of emotional and behavioral well-being through cognitive behavioral therapy, and the importance of less is more when it comes to medication and the central nervous system.

Knowledge is power as @slatesslates1 indicates. Agreed. Learn as much as you can about your diagnosis from reputable sites like Mayo Clinic or WebMD and truly understand the importance of self care and lifestyle change. One of my favorite sayings is -

"When you can't change what has happened, change the way in which you respond".

I'm glad to hear that many of your symptoms are settling. Rest assured you are not alone in your journey. I also grieved the loss of my job, heck, my identity. Please know that you are in good company here on Connect and have support.

What is the first step that you feel is most important in symptom management?

@rwinney I am always tired and energy during the day suffers. I am trying to get my legs stronger but it is hard when you feel weak from fatigue.

I was also diagnosed with CF. I too have the same issues. I can’t walk or stand for long at all and am easily winded. Makes it hard to get energy to exercise. I do better in the swimming pool. We’ve moved to Florida and now have one so it is easy to ge out and move a bit. Maybe if you have a YMCA nearby that will help and just get you out to meet new people! Wishing you well .

@lizzietish56 That’s understandable. The important part is that you're trying to get your legs stronger. You can only do the best you can do. Small steps.

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.

@4corazon fatigue is under diagnosed and improperly diagnosed, especially among women because we are normally so busy. It’s a variety of things that it is attributed to, but the doctors don’t usually get to the source. You can have an intercellular test, which is what I did back in 2006. It located a deficiency in l-carnitine. So when I get laid in with fatigue, I’d be sure to take the l-carnitine. My current doctor is really good and even though she did the testing they had did not have a support system to work with an L carnitine deficiency. However, I went to the endocrinologist he decided I had low cortisol and that was a normal thing and I don’t buy it. Plus, he recommended nothing to address the fatigue. I have become very gender biased over the years and the way the doctors treat women and their ailments. I take a variety of supplements that seem to help provide good energy. Last year I went back to bioidentical hormone replacement and the testosterone in the mix is very helpful at providing all day energy. I was on bioidentical hormones for 10 years after early menopause and the testosterone definitely gets me through the day. On top of all that a few months ago, my A1c went up. Not enough to be called diabetic but borderline to insulin and resistance. Once again, I had to demand a treatment from the doctors. It seems that putting me on metformin, which is a very old non-consequential medicine for insulin resistance solved my problem with fatigue after 15 years of suffering with it. Sometimes I just have a visit to the doctor in the morning and I have to lay down for an hour when I come home. You didn’t say your age exactly but I am 68 going on 69. Part of me also things I don’t accept my age. I’m not a napper, but if I have severe fatigue and I lay down for an hour, I’m good to go. That is very unlike me, but it might be part of it just aging and accepting aging. But addressing the borderline A1c with metformin was amazing I now wake up better have more energy last the whole day into the evening and then I settled in to watch the evening news and go to bed and sleep better. Make sure you’re getting good deep sleep that’s part of it. After menopause, we don’t get deep sleep, and we forget after a number of years that we still need it. That makes us more active during the day. It’s kind of a vicious circle of not having good deep sleep and being tired during the day. Good Luck don’t give up. Keep on fighting.