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.

joansmurphy | @joansmurphy | Feb 23, 2023
In reply to @astaingegerdm "@joansmurphy You are NOT lazy. Don’t listen to negative people. When I was at my worst..." + (show)
@astaingegerdm

@joansmurphy
You are NOT lazy. Don’t listen to negative people.
When I was at my worst there were days when I was on my bed, unable to do anything, actually panting.
The family didn’t really understand. The doctors didn’t either.
Most doctors don’t understand the extreme fatigue and exhaustion associated with autoimmune illnesses.
Did you have any treatments for cfs and long Covid?

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Last summer I was very short of breath & ended up in the hospital. They gave me steroids which helped a lot. I could physical therapy. I was at my best in December but since then I’m sleeping about 12 hours a day. I’m now on LDN. I don’t see a difference but I’ve heard it can take 8 months to reach it’s full effect.

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Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Feb 23, 2023
In reply to @rarelybees2889 "We need much more research on this topic before we will ever get better treatment. I..." + (show)
@rarelybees2889

We need much more research on this topic before we will ever get better treatment. I don't think there is an easy solution for it. I asked my Mayo dr and he said there is not enough research (as we know) but that that it could be brain inflamation.
So WHY don't they research it more?
I've been diagnosed with both autoimmune fatigue and Chronic Fatigue.
But there is not much help on hand for this from the professionals and thats discouraging.
As we all know it can be difficult to deal with and is NOT in our heads!

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@rarelybees2889
Here is a link to a NIH article about autoimmune fatigue- very long and detailed. Skip to Conclusion.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6691096/

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marye2 | @marye2 | Feb 24, 2023

Sometimes I have to fight with myself to get going, too. I felt it more after COVID, than I have felt over the decades with MCTD. No idea why. Wow on finding 50 mg of modafinil, that works! I'll have to look into it. Exercise seems to help my metabolism get going--my BP has always been low--as well as keeping muscles loose and strong. Keeping up strength makes tasks easier and also aids "motility" that keeps circulation good. I would add that a non-processed diet, low sugar/no high fructose corn syrup/avoid aspartame makes a difference, too. Hydration always is an issue. I take a sublingual B-12 that helps with focus and pain (from Costco). As a behavior adaptation, I plan a lot more now, so that I have a light day before and after an event that is usually more than I normally do. Sometimes, that takes care of recovery time. Spoon theory is useful in conceptualizing your use of energy. https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

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WI CF | @rachellefanello | Mar 1, 2023
In reply to @johnwburns "If you had significant apnea, you might want to revisit getting it treated unless you're sure..." + (show)
@johnwburns

If you had significant apnea, you might want to revisit getting it treated unless you're sure that you will never sleep on your back. I hate CPAP but it helped me somewhat. The rheumatologists acknowledge the fatigue as a big factor in Sjogren's but treating it effectively is another thing. Presumably your thyroid is being replaced if you have Hashimoto's. Iron deficiency has been linked to restless legs so I assume that your iron has been evaluated. A lot of things are being studied but obviously no smoking gun as far resolving fatigue. Moderate exercise, as in walking, might help, helps me, and it can't hurt so its worth a try. Good thing that you have a supporting environment and spouse. Gives you time to develop a strategy.

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I myself have 5 autoimmune diseases. The theory is, if you have one you are prone to get more. I have had these problems for years but refuse to quit work and still work full time, taking off days when I can. Have been told I should think about leaving work, but I am stubborn. I been taking liquid B12 and that seemed to help for quite some time for the fatigue. In the last 4 years they have put me on Modafinil, but I got more tired with this. I am now on Ritalin and that seems to help some, so I am sticking with that for now. I as well have the sleep apnea and use CPAP. I was falling asleep on the way to work. That has helped with the driving to work issues but still am tired during the day, so this is why they are trying other medications. I have very mild sleep apnea so feel it is the autoimmune disorders causing more of the fatigue. Thanks for the article you supplied. I myself do mild exercise and Yoga which have both helped too.

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2 replies
sharing | @sharing | Mar 2, 2023
In reply to @rachellefanello "I myself have 5 autoimmune diseases. The theory is, if you have one you are prone..." + (show)
@rachellefanello

I myself have 5 autoimmune diseases. The theory is, if you have one you are prone to get more. I have had these problems for years but refuse to quit work and still work full time, taking off days when I can. Have been told I should think about leaving work, but I am stubborn. I been taking liquid B12 and that seemed to help for quite some time for the fatigue. In the last 4 years they have put me on Modafinil, but I got more tired with this. I am now on Ritalin and that seems to help some, so I am sticking with that for now. I as well have the sleep apnea and use CPAP. I was falling asleep on the way to work. That has helped with the driving to work issues but still am tired during the day, so this is why they are trying other medications. I have very mild sleep apnea so feel it is the autoimmune disorders causing more of the fatigue. Thanks for the article you supplied. I myself do mild exercise and Yoga which have both helped too.

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Hi! I have the same thing and have been on Ritalin for a few years because, as I told my doctor “I was in love with my bed,” it was so exhausting hoisting myself from bed to couch, etc. I STILL am that way but with Ritalin at least I have more quality days!! I am 76, female btw.

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sharing | @sharing | Mar 2, 2023
In reply to @rachellefanello "I myself have 5 autoimmune diseases. The theory is, if you have one you are prone..." + (show)
@rachellefanello

I myself have 5 autoimmune diseases. The theory is, if you have one you are prone to get more. I have had these problems for years but refuse to quit work and still work full time, taking off days when I can. Have been told I should think about leaving work, but I am stubborn. I been taking liquid B12 and that seemed to help for quite some time for the fatigue. In the last 4 years they have put me on Modafinil, but I got more tired with this. I am now on Ritalin and that seems to help some, so I am sticking with that for now. I as well have the sleep apnea and use CPAP. I was falling asleep on the way to work. That has helped with the driving to work issues but still am tired during the day, so this is why they are trying other medications. I have very mild sleep apnea so feel it is the autoimmune disorders causing more of the fatigue. Thanks for the article you supplied. I myself do mild exercise and Yoga which have both helped too.

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I also have sleep apnea most likely but also clench & grind my teeth and have restless legs. I sleep through with the help of magnesium capsules. But, nit a restful sleep so probably why I’m exhausted every day. 🙀😵‍💫

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2 replies
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 2, 2023
In reply to @sharing "I also have sleep apnea most likely but also clench & grind my teeth and have..." + (show)
@sharing

I also have sleep apnea most likely but also clench & grind my teeth and have restless legs. I sleep through with the help of magnesium capsules. But, nit a restful sleep so probably why I’m exhausted every day. 🙀😵‍💫

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@sharing I’m really surprised you get to sleep at all! Do you use a CPAP for the sleep apnea? And a mouth guard for your grinding teeth? Sometimes I find that getting organized for bed wakes me up and then i really can’t sleep!
What have your doctors advised on your sleeplessness?

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1 reply
WI CF | @rachellefanello | Mar 2, 2023
In reply to @sharing "I also have sleep apnea most likely but also clench & grind my teeth and have..." + (show)
@sharing

I also have sleep apnea most likely but also clench & grind my teeth and have restless legs. I sleep through with the help of magnesium capsules. But, nit a restful sleep so probably why I’m exhausted every day. 🙀😵‍💫

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I wear a mouth guard as well with my Cpap and sleep well. Have you had your sleep apnea evaluated? That could be a cause for the restless legs. If you have sleep apnea, you could be moving your legs upon arousals from apnea that you may not be aware of. If you get the apnea fixed it could take care of the leg issues, too. If you haven't been evaluated, it might be worth looking into.

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1 reply
sharing | @sharing | Mar 2, 2023
In reply to @becsbuddy "@sharing I’m really surprised you get to sleep at all! Do you use a CPAP for..." + (show)
@becsbuddy

@sharing I’m really surprised you get to sleep at all! Do you use a CPAP for the sleep apnea? And a mouth guard for your grinding teeth? Sometimes I find that getting organized for bed wakes me up and then i really can’t sleep!
What have your doctors advised on your sleeplessness?

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Nightguard with dry mouth is scary. Plus, they didn’t expect my bite to be so hard, but I wore a hole in it the first 2 weeks. Also, bad decision as my bite is off. I lost a molar. No desire to try cpap but, yes, I have low energy.

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sharing | @sharing | Mar 2, 2023
In reply to @rachellefanello "I wear a mouth guard as well with my Cpap and sleep well. Have you had..." + (show)
@rachellefanello

I wear a mouth guard as well with my Cpap and sleep well. Have you had your sleep apnea evaluated? That could be a cause for the restless legs. If you have sleep apnea, you could be moving your legs upon arousals from apnea that you may not be aware of. If you get the apnea fixed it could take care of the leg issues, too. If you haven't been evaluated, it might be worth looking into.

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Well, I seem to sleep through most nights. I live alone. I’ve woken myself up with a snore.

Frankly, I’m also dealing with repairs that need done from hurricane Ian. UPC is insolvent so…..I feel like I just can’t take on anything else right now. 🙀😵‍💫

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