Hi Wondering if anyone has been diagnosed with autoimmune fatigue and/or chronic fatigue? I was diagnosed at Mayo Clinic. I wish there was more research into both of these…
Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.
I fully support the information sharing happening in this discussion. Conditions like chronic fatigue syndrome, Lyme disease, Epstein Barr, etc. and symptoms like fatigue and brain fog are very limiting on one's quality of life. Getting a diagnosis is a long and tiring journey often involving many tests, appointments and medical professionals. It can be really helpful to problem solve and test new theories with fellow patients.
However, I'd like to remind everyone of the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/ Most notably, I underline that in this forum we ask that members be mindful about giving out medical advice:
– Sharing your own experience is fine, but don't tell other members what they should do.
– Experiences and information shared by members on the Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment.
– Never disregard professional medical advice or delay in seeking it because of something you have read on the community. See the full Disclaimer (https://connect.mayoclinic.org/disclaimer/).
I was diagnosed with chronic fatigue syndrome in my 30's. Almost 40 yrs ago. My PCP diagnosed it within 2 weeks. The chairman of infectious disease at my local hospital confirmed it. I was put on antibiotics. I had to go on disability for a month. Unfortunately because nobody knew much about chronic fatigue syndrome and they thought it was all in your head. I tested positive for Lyme disease, but my doctor thought it was a false positive. Consequently I was fired from my job for going on disability.
I was running 103 fever for almost 6 months. I was extremely tired, sleeping almost 14 hrs a day and had total brain fog. I would get lost driving and I wasn't able to work for almost 6 months. My doctor put me on Prozac along with the antibiotics. I couldn't remember a phone number for a very long time. The prozac helped tremendously with the brain fog. I not a pill popper, but my doctor convinced me to take it until I was feeling better.
I went to a symposium at Robert Wood Johnson Hospital for CFIDS. There were 500 people in attendance from all over the country. There were 10 infectious disease doctors who couldn't really tell you anything. There was one Asian doctor who said he couldn't explain it but his patience were taking Echinachea and it seemed to work. After about 30 days of trying echinachea, It's a Chinese herb. I started feeling better. I cried. My mind started coming back very slowly. I could finally remember a phone number. I had to change my habits and listen to my body . When I was tired, I had to rest. I didn't fight it. Exercise and health eating is important too. I would play tennis once a week even if I pushed myself. The social aspect was important also.
I still take 2 echinachea a day and will never stop. When I don't take it for a week, I start getting tired again and fever comes back. It's almost 40 years later and still not much being done. But I'm still feeling good.
Its an awful disease but you need to be your own advocate. I belonged to CFIDS for a very long time. I learned a lot of good tips on how to survive and enjoy life.
Sorry this is long, but chronic fatigue took my life away for half my life. But I learned how to cope and have been playing tennis and pickleball for over 40 yrs.
Hope this helps. Please don't let doctors tell you its in your head. Its very real! 🙏❤️
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@bfort – May I ask how many mg of Echinacea you take daily They seem to come in different strengths.
I will start taking it, hoping it can strengthen my immune response too. It can’t hurt.
This is the brand that I use. Be sure to check with you doctor to be sure you have no side effects with other meds you take.
This is what I use. Hope it helps
I cannot remember all the tests they've done, but they were always searching for some reason for my body being so weak. Even tested for TB, vitamin deficiency, brain problems, lung problems, since I had one lung totally collapse in the past. I do have fibromyalgia, which we know causes CFS, but this is way beyond fatigue. Several skeletal problems, but that's not causing the weakness, of course. I don't have the results yet from the nerve/muscle test, but I don't expect anything at this point.
They have sent me to several specialists, but no help at all. Needless to say, it is depressing.
Hello Dorma, I just saw this message "Because they don't have a clue! Not even the doctors. I just sent you another note about my challenge with weakness.
Good luck!!!" in the "Just Want to Talk" discussion, but I was not sure who you were trying to connect with. It is possible that you are trying reach someone who is no longer active here.
Can you tell us a bit about yourself and what you want to talk about?
I sent a private note to jodyalbright about the weakness she is having. No idea if she got it or not. I've been fighting with extreme weakness for nearly 2 years; many tests, several doctors, extensive blood work. It was very depressing to be useless. They finally…accidentally…discovered that I have MAC; it is like TB, only not contagious. I've been on the 3 meds about 2 months, and am seeing improvement. Still a very long way to go, but at least I finally got some answers. The CT scan of my chest showed something growing in my lungs. I am hoping that she will finally get some answers too.
I am 79, weigh 95 pounds, and have DDD, Fibromyalgia, arthritis with some complications, and a few other challenges, but the weakness is by FAR the worst to deal with!
Please see our group dedicated to people with MAC and Bronchiectasis, a lung condition often associated with it. https://connect.mayoclinic.org/group/mac-bronchiectasis/
You will be able to connect with people who have MAC and learn how we live with the associated fatigue and coughing. I personally never heard of MAC before mine was diagnosed about 5 years ago, had been sick and weak for years…
@dorma– It’s really great that you have a diagnosis that’s treatable.
When you were diagnosed with MAC did you have any pulmonary symptoms?
Also, the immense weakness you are describing is this weakness of arms and legs for example or is it also extreme exhaustion?
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