1. < Autoimmune Diseases

Autoimmune Diseases and Fatigue

Posted by JohnWBurns @johnwburns, Jul 13, 2016

Fatigue is probably intertwined with the definition of "illness", almost any illness, but with some conditions fatigue becomes ingrained into the afflicted person's being and is a feature of their daily life. Such is the case with the highest profile disorders, cancer and cardiovascular disease, but it is just as true with at least some autoimmune diseases. I have a long history of dealing with autoimmunity and the complaint that kept bringing me back to doctors persisting in finding out what was going on was the dogged lack of energy, vitality. I got guess after guess after guess and when I got the "answer" it was basically that fatigue was part of the deal with the autoimmune disease that I have, Sjogren's, as well as I'm sure many others. So what I'm asking here is if you experience it, fatigue, how has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?

In my case its exercise, rest, and a fairly regulary low dose, around 50 mgs (usual recommended dose 200 mg) of modafinil, which I don't take for Sjogren's but rather for "Excessive Daytime Sleepiness" linked to Obstructive Sleep Apnea. I accidentally found out that it mitigated my general weariness. I've read some solid studies that found that American Ginseng can help cancer-related fatigue but apparently it doesn't work for Sjogren's, for me at least. Since fatigue impacts a person's total life experience in all domains, any information that might lead to dampening or controlling it would be very helpful to a lot of folks I'm sure.

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

Texas Freedom | @oregongirl | Feb 17, 2018
In reply to @louferrigno "anybody out there? How do I know when I need to go to the hospital with..." + (show)
@louferrigno

anybody out there? How do I know when I need to go to the hospital with flu

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Someone said if your temp is 101 head for the ER. BUT the ER is packed, go to your neighborhood ER Center

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Kanaaz Pereira, Connect Moderator | @kanaazpereira | Feb 17, 2018

Hi @louferrigno,

I'm tagging Mentor @jimhd; I think he's just about recovering from flu, and may have more insights for you.

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Texas Freedom | @oregongirl | Feb 17, 2018

Love to know how long the flu lasts. My eyes have been watering lately and I keep saying it is alergies. Along with my RA and alergies, I just want to sleep. I do not know how anyone who had children goes thru this and keeps a house and kids. My hat goes off to anyone like that on here. I see my blood doctor next Friday. I have no idea what he is looking for. If there is nothing there, why does he make me come back. I guess I did not ask because I was afraid of the answer. My Rhemy sent me there as something spooked her on my blood work. I know they have been talking but not to me. This Friday is it. I have been quiet long enough. Speak up two.

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oldkarl | @oldkarl | Feb 18, 2018

@johnwburns Hi, John. Have just read your note about fatigue. Good stuff, but perhaps it doesn't go far enough. I also have a lot of autoimmune effects, and we are still trying to work out the really detailed dX. Primary systemic hereditary hATTRwt or some other form of Light Chain Amyloidosis. It includes Sjogrens, SICCA, disorders of the heart, brain, thyroid, esophagus, lungs, kidneys, spleen, skin, bladders, prostate, joints, and the rest. Anyway, I am 78, and since I was about 8, I have felt tired after even very little effort. It is not to say that I cannot do anything. Perhaps we humans are just too quick to throw in the towel after some less than forceful sense of fatigue. I really just have to keep going past my fatigue level. In my childhood I missed a lot of school because I was so tired, and had a lot of nausea. Yet at 18 I could throw an 80 pound hay baled over a fully loaded truck. I played, coached and officiated football for 18 years. I ran half-marathons. I backpacked frequently, often walking for 8-10 days with a 70-90 pound pack. The point is not that I didn't get tired. I did. But I learned early on that I could keep going in spite of feeling tired. I think the sense of fatigue may be one of the ways the body protects itself from doing things that would harm the body. And I believe that many diseases may increase this sense of "enough already"; they may increase it beyond the point of being helpful to the point of being hurtful, or at least beyond a necessary level. Right now, I get very tired walking 25 feet through our small house. But I have to force myself to keep going, in spite of the fatigue.

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1 reply
Texas Freedom | @oregongirl | Feb 18, 2018
In reply to @oldkarl "@johnwburns Hi, John. Have just read your note about fatigue. Good stuff, but perhaps it doesn't..." + (show)
@oldkarl

@johnwburns Hi, John. Have just read your note about fatigue. Good stuff, but perhaps it doesn't go far enough. I also have a lot of autoimmune effects, and we are still trying to work out the really detailed dX. Primary systemic hereditary hATTRwt or some other form of Light Chain Amyloidosis. It includes Sjogrens, SICCA, disorders of the heart, brain, thyroid, esophagus, lungs, kidneys, spleen, skin, bladders, prostate, joints, and the rest. Anyway, I am 78, and since I was about 8, I have felt tired after even very little effort. It is not to say that I cannot do anything. Perhaps we humans are just too quick to throw in the towel after some less than forceful sense of fatigue. I really just have to keep going past my fatigue level. In my childhood I missed a lot of school because I was so tired, and had a lot of nausea. Yet at 18 I could throw an 80 pound hay baled over a fully loaded truck. I played, coached and officiated football for 18 years. I ran half-marathons. I backpacked frequently, often walking for 8-10 days with a 70-90 pound pack. The point is not that I didn't get tired. I did. But I learned early on that I could keep going in spite of feeling tired. I think the sense of fatigue may be one of the ways the body protects itself from doing things that would harm the body. And I believe that many diseases may increase this sense of "enough already"; they may increase it beyond the point of being helpful to the point of being hurtful, or at least beyond a necessary level. Right now, I get very tired walking 25 feet through our small house. But I have to force myself to keep going, in spite of the fatigue.

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Old Karl.. your story sounds familiar. As a child in Kindergarten I would come home from school and fall into the couch. After weeks of this my mother took me to the doctor. He took what I remember about a minute to tell my mother I had Theumatic Fever. Then started the endless hospital stays and antibiotics. By age 9,I had experienced my one side of my body was paralised. They must have thought Polio. But no. My father had to carry me from location to another. Then over night it seemed I was well. I have no resulting heart mummur. When diagnosed with RA I thot here we go again.

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Texas Freedom | @oregongirl | Feb 18, 2018

Old Karl. My daughter who is 52 had also been diagnosed with RA. When she was young she was diagnosed with Lupis and Rainodges. (Sorry about Spelling). I asked doctor if RA can be inherited. He said no. That was yrs ago. I wonder if that had changed.

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Mentor
Jim, Volunteer Mentor | @jimhd | Feb 19, 2018
In reply to @louferrigno "anybody out there? How do I know when I need to go to the hospital with..." + (show)
@louferrigno

anybody out there? How do I know when I need to go to the hospital with flu

Jump to this post

@louferrigno

Sorry for the delay in responding. Some days I'm not up to going online.

The doctor told me that, if after the fever goes down and I start feeling better, and the fever returns, get to the ER.

I had a fever for around ten days and felt lousy for a week after that, but I didn't get a fever again.

I hope you're starting to feel better.

Jim

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annie1234 | @annie1234 | Feb 26, 2018
In reply to @colleenyoung "John, I'm so glad you started this discussion specific to fatigue. As you know my mom..." + (show)
@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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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...

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 26, 2018
In reply to @colleenyoung "John, I'm so glad you started this discussion specific to fatigue. As you know my mom..." + (show)
@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?

Jump to this post

Hello @annie1234, welcome to Mayo Connect. Thank you for sharing your post. There is an active discussion for Chronic Epstein Barr on Connect here that you may want to read through:
-- https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/bookmark/?ajax_hook=action&_wpnonce=12a348c300

I’m tagging @clghanimo @jenchaney727 @suesiegel @arriba @copiela @jatl @cheryldotson @cummings3 @aman_23_23, who have all discussed Epstein-Barr Virus (EBV), and I’m hoping they will be able to offer some more insight.

Here are a few conversations on Connect that you may find useful:
– Chronic Pain members – Welcome, please introduce yourself http://mayocl.in/2tz0bcE
– I just need some answers!!! Please help me!!! http://mayocl.in/2uf42sH

More information from the National Institutes of Health on the Epstein-Barr Virus treatment:

Optimal Treatment for Chronic Active Epstein-Barr Virus Disease
— https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2776035/

I’m not sure if it is an option for you but if you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: https://www.mayoclinic.org/appointments

John

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lioness | @lioness | Feb 26, 2018
In reply to @colleenyoung "John, I'm so glad you started this discussion specific to fatigue. As you know my mom..." + (show)
@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?

Jump to this post

When I was 20 or so I had Mono Epstein Barr the Dr. gave me high-doses of vitamins not sure what they where as I was sort of out of it I had a high count and the rash with it.It was in my 40s I was diagnosed with fibromyalgia now at 75 I have fatigue almost all the time.Just started Cymbalta

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