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Autoimmune Diseases and Fatigue

Autoimmune Diseases | Last Active: Oct 4, 2023 | Replies (544)

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@colleenyoung

John, I'm so glad you started this discussion specific to fatigue. As you know my mom suffers from fatigue and we're still trying to get to the bottom of the cause. I'm tagging other members on this discussion in the hopes that they'll share their experiences with autoimmune disease and fatigue.

@robbinr @jharsh @dawn_giacabazi @flowerbeauty @jillnc @kyjeanne @blindeyepug: John asks, Do you experience fatigue? How has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?

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Replies to "John, I'm so glad you started this discussion specific to fatigue. As you know my mom..."

Marylou8 here.  I'm prepared to go along with that theory.

I was able to turn in a written request to Mayo to hopefully get in and see someone, but I was turned down. I worked my first full week teaching last week, and I have been in bed all weekend exhausted. My bruising, lack of appetite, and joint pains have been so much worse. I ended up catching a virus and missing my first day of work. That was such a huge blow for me, I am sitting here this morning, absolutely heartbroken that I have been resting now for four straight days and still feel exhausted and no better than I did Friday when I came home.
My friend says I should have my doctor give Mayo a call, but I don't believe I can go there. I am just trying to put one foot in front of the other. It seems like each day I have started working full-time, I must drink several energy drinks and take four Rhodiola's a day to keep going. This helps till I stop them on the weeken and crash.
I have been blessed with such a wonderful group of students and co-workers.
I have noticed a a few new things that haven't happened before. My left ear has been killing me this weekend, like an earache, but it isn't one.
My left side itches quite a lot at out of the blue times. My left leg will twitch when I'm resting. Does this make any sense to anyone?

Everything you say is correct. After 10 years years, I'm just getting to the phase of trying to pace myself. Hard for someone with A personality. With a physical education back ground I have taken the exercise component seriously but it I don't get to it early in the day, I am not always successful. Also taken up Meditation and found it very helpful. However again - the earlier in the day the better

Hello @bieche -- welcome to Mayo Connect, we are glad you found us. Connect is a great place to ask questions, share your health concerns and learn what others with similar health issues are doing for treatments. I can relate to your approach with exercise as I have to get it done when I first get up or it doesn't get done and I know I really need to do it. My lifestyle is pretty sedentary so I need to force myself to exercise. Wasn't always that way but the older I got the less active I became. I try to make sure I do at least 30 minutes 4 to 5 days a week on my recumbent exercise bike. It's not much but every little bit helps at my age.

What type of meditation do you find helpful?

Thanks again for sharing.

John

My brother had to much iron in his blood substitute him to the point he,s fall asleep on the phone.He had to give blood everytime good bank came around Its called Hemochromotosis

It is hard to pace yourself I know look into tapping.com It's like acupuncture without needles The website can explain it better then I can this is another tool for us

Just an idea, I periodically need Tylenol PM and it works but I started taking 1/2 pill and I don't have the morning issues. It's worth a try. Now I seldom take them but when I am restless I don't hesitate taking them. I, like you, am functional after a good nights sleep. With me it seems to be an overactive brain/mind......I keep thinking of things that aren't really relevant to anything important.

Is anyone taking Savella for fibromyalgia? I heard that worked well with fatigue. Today is the first day I am taking it. I am weaning off the Cymbalta. I have been on Cymbalta for years and I think my body is immune to it now. I am extremely tired and achy. I have other issues. I have Chronic Fatigue, that is why I started the Cymbalta. I was diagnosed about 23 years ago. I had my first child and had to do everything, got sick, mono, Epstein bar then had to quit my job. Went to university where they were doing research on CFS which was great because they tested me for everything possible and free, but wasn't getting help. Did a few trial meds but didn't know if placebo.....so mom said no more and got a dr. and Cymbalta was key. I got better, it went into 'remission' I was able to even have a second child. Wasn't working though, but a few years later returned to work. Then out of the blue diagnosed with MALS, my SMA and celiac arteries were narrowed from being encased by diaphragm fibers, blah blah, basicly it was smushing the arteries. Well major surgery, hospital for 7 days, on disability now. Can't recoup....the CFS back. I did also have major family stresses during this time which did not help at all.
So question is anyone taking SAVELLA and then the dosage is one in morning and one at night. I thought that odd since it is suppose to help keep you awake. Can anyone tell me anything about that? I will ask my dr as well but sometimes better to hear from people actually using it.
Thank you and good luck to everyone suffering with fatigue, it makes everything magnified even worse I think.

@mrsdeecee. I too struggle daily. I am 59 and have found that I can only clean a small portion or organize a little daily. I started excersizing regularly and it does help! Fatigue I have to fight too so I just do what I can and like my Neurologist once said... This is your new "norm".

I was diagnosed with West Nile Virus and Epstein Barr almost 3 years ago. My life has been a train wreak ever since! My blood work show the EBV is still "off the charts"!!! Done almost everything but nothing has worked!! Anyone have any suggestions?? At wits end...