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.

Thanks - I guess I'll have to up my caffeine....no script required!

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@funcountess

Read your post, and yes fatigue is a common problem as we age. Have you considered vitamin B12 shots, or pill form B12?
It may help. Do you get enough rest, and take a afternoon nap?
Too many doctors dismiss complaints of fatigue as just an elderly patient talking.
Young doctors do not always see the entire picture, and older doctors are cranky.
Funcountess

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Pill form of vitamin B12 should be sublingual. Older people don't absorb it through the stomach very well.

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@carolhastings

I have an "Undifferentiated Connective Tissue Disorder" (that means I have 3 of the 4 "markers" for Lupus). As many of you have noted, chronic fatigue is a game changer. I exercise religiously; considered to be an active 73-year old I'm quite certain many of you have been told that fatigue goes with the territory if you have an autoimmune disease/disorder. How I wish I could get a stimulant to give me a boost; however, most doctors won't prescribe one and suspect complaints of fatigue are due to depression. I guess I'm getting resigned and grateful that I don't have something worse!

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@carolhastings- I know what you mean by wanting some stimulating medication. After years of autoimmune disease and finally treated- for now at least- with immunosuppressive medication, I have a deep body fatigue and tired brain. Some Adderall would be nice. If I have to be sharp one day, I take a caffeine tablet that carries me through part of the day. You are correct , many of us are older and not prioritized in trying stimulants. After all, we are not working, so who cares if it’s hard to get through the day.

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Thanks for the reply. If I knew a way to get ahold of a safe stimulant, I'd get it. I was on a Ritalin generic while working and only took it "on occasion." Kept a stash for those days I genuinely needed it. It got me through until retirement; after that, my primary wouldn't give it to me. I rarely took it but it was a comfort to have on hand for those difficult days. Makes you feel like a drug addict!

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@funcountess

Read your post, and yes fatigue is a common problem as we age. Have you considered vitamin B12 shots, or pill form B12?
It may help. Do you get enough rest, and take a afternoon nap?
Too many doctors dismiss complaints of fatigue as just an elderly patient talking.
Young doctors do not always see the entire picture, and older doctors are cranky.
Funcountess

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does anyone have ataxia ... fatigue is a symptom.

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@rivergirl8243

does anyone have ataxia ... fatigue is a symptom.

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@rivergirl8243, Here are discussions on Connect for ataxia that you might find helpful.

-- Ataxia: https://connect.mayoclinic.org/discussion/ataxia-1/
-- Progressive ataxia: https://connect.mayoclinic.org/discussion/progressive-ataxia/

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not sure I'm replying correctly

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@rivergirl8243

not sure I'm replying correctly

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Hi @rivergirl8243, If you click the Reply button under the post you are replying to the post. If you click the Post Reply button at the bottom of the page you are just creating a new post directed at any in the discussion. Also using the @ member name sends an email notification to the specific member and also addresses who your post is for.

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@johnbishop

Hi @rivergirl8243, If you click the Reply button under the post you are replying to the post. If you click the Post Reply button at the bottom of the page you are just creating a new post directed at any in the discussion. Also using the @ member name sends an email notification to the specific member and also addresses who your post is for.

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thanks

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