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 group.

I’m unsure if this modality was already addressed to help assuage chronic fatigue with autoimmune disease present. I have RA and the blood markers for lupus. Also, I have congenital OA, sleep apnea, hypertension, osteoporosis, with the latter 3 associated with RA.

Besides finding the right medication mix (a biologic and Plaquenil, and lots more pharmacopeia), the biggest lifestyle change I made was to follow an anti-inflammatory, ketogenic diet. My energy level shot up to the point that I’m again mountain biking strenuous, single track, advanced trails, albeit much slower than I ever did before. My chronic brain fog (to the point where multi-syllabic words were beyond me) has dissipated, though it returns from time to time after significant energy expenditure. While I do not have the super high energy level of my pre-RA days, I’m grateful to again be active.

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I am treated for 3 autoimmune diseases.
I have no outward signs of them and am lucky.
After i recovered from the second moderna shot i stopped needing a nap a day and generally feel better. I didnt know i wasnt feeling great until i began to feel better. A couple of friends felt the same side affect.
Not placebo bec we were not comparing to anything nor were we expecting anything. It just happened. Feeling well and lucky!

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@sonia0

I’m unsure if this modality was already addressed to help assuage chronic fatigue with autoimmune disease present. I have RA and the blood markers for lupus. Also, I have congenital OA, sleep apnea, hypertension, osteoporosis, with the latter 3 associated with RA.

Besides finding the right medication mix (a biologic and Plaquenil, and lots more pharmacopeia), the biggest lifestyle change I made was to follow an anti-inflammatory, ketogenic diet. My energy level shot up to the point that I’m again mountain biking strenuous, single track, advanced trails, albeit much slower than I ever did before. My chronic brain fog (to the point where multi-syllabic words were beyond me) has dissipated, though it returns from time to time after significant energy expenditure. While I do not have the super high energy level of my pre-RA days, I’m grateful to again be active.

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@sonia0 Your posting today is just so positive! And the diet you’ve adopted is really working for you, too. I also have an autoimmune disease and keep thinking that maybe I need to make this change. How long did it take you to fully change to this diet? Was it difficult? Becky

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@siosal

I am treated for 3 autoimmune diseases.
I have no outward signs of them and am lucky.
After i recovered from the second moderna shot i stopped needing a nap a day and generally feel better. I didnt know i wasnt feeling great until i began to feel better. A couple of friends felt the same side affect.
Not placebo bec we were not comparing to anything nor were we expecting anything. It just happened. Feeling well and lucky!

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There's a place to report this on the CDC site. I had more inflammation that week…

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@becsbuddy Hi Becky. I totally believe "you are what you eat", and have tried very hard to stick to my dietary recommendations. However, as human nature would have it, I sometimes chose to eat foods I knew were on the Do Not Eat list. I was forever having flareups both for my IBD and OLP, followed by the resulting days of misery. Since my most recent hospitalization this month when the Hospital Dietician got involved and sent a six-page dietary directive to the Head Chef at my seniors' residence, I'm pretty much obliged to comply with those recommendations. (There are 3 or 4 staff on my tail to be sure I don't stray!) The few times I've rebelled and chose menu items that were outside the realm of what was good for my conditions, I've now clearly learned that eating has an extremely important role in how my system reacts, good or bad. Give it a try, Becky!
Hugs, Laurie

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@sonia0

I’m unsure if this modality was already addressed to help assuage chronic fatigue with autoimmune disease present. I have RA and the blood markers for lupus. Also, I have congenital OA, sleep apnea, hypertension, osteoporosis, with the latter 3 associated with RA.

Besides finding the right medication mix (a biologic and Plaquenil, and lots more pharmacopeia), the biggest lifestyle change I made was to follow an anti-inflammatory, ketogenic diet. My energy level shot up to the point that I’m again mountain biking strenuous, single track, advanced trails, albeit much slower than I ever did before. My chronic brain fog (to the point where multi-syllabic words were beyond me) has dissipated, though it returns from time to time after significant energy expenditure. While I do not have the super high energy level of my pre-RA days, I’m grateful to again be active.

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Maybe I missed it but where can I find this diet? I'm desperate!! Just had surgery on my elbow 6 weeks ago to remove damage from OA and RA and have to get back to working full time and can hardly make it for 5 hours a day. I'd appreciate any help.

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@artist01

@becsbuddy Hi Becky. I totally believe "you are what you eat", and have tried very hard to stick to my dietary recommendations. However, as human nature would have it, I sometimes chose to eat foods I knew were on the Do Not Eat list. I was forever having flareups both for my IBD and OLP, followed by the resulting days of misery. Since my most recent hospitalization this month when the Hospital Dietician got involved and sent a six-page dietary directive to the Head Chef at my seniors' residence, I'm pretty much obliged to comply with those recommendations. (There are 3 or 4 staff on my tail to be sure I don't stray!) The few times I've rebelled and chose menu items that were outside the realm of what was good for my conditions, I've now clearly learned that eating has an extremely important role in how my system reacts, good or bad. Give it a try, Becky!
Hugs, Laurie

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I believe similarly when it comes to autoimmune diseases. One of mine caused stage 3 liver cirrhosis. I was blessed with a liver transplant, but have developed numbness, tingling, and pain in all extremities and fatigue due to another, related autoimmune disease.

I’ve set strict diet rules and a walking goal of at least two miles a day. Morning walking is the way to go. I’ve found both my diet and walking goals are getting easier to stick with as time goes on.

Continue to take pride in your discipline and meeting your daily commitment for health!

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@athenalee

I believe similarly when it comes to autoimmune diseases. One of mine caused stage 3 liver cirrhosis. I was blessed with a liver transplant, but have developed numbness, tingling, and pain in all extremities and fatigue due to another, related autoimmune disease.

I’ve set strict diet rules and a walking goal of at least two miles a day. Morning walking is the way to go. I’ve found both my diet and walking goals are getting easier to stick with as time goes on.

Continue to take pride in your discipline and meeting your daily commitment for health!

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@athenalee Hi, Athenalee. Like you, I've got 3 or 4 autoimmune diseases and as you know from your extensive experience with them, there forever seems to be something serious to take care of! I totally agree with you that diet and exercise (walking, for you and I) are primary to our care. Morning is the only time that's good for my walking regime too, when my always low energy might be at it's best. Congratulations on doing two miles a day!! My best, before recent hospitalizations since April, was 1.3 miles, and I'm going to start today to work my way back up to that goal. As @jakedduck1 says, "inch by inch, one step at a time". Yesterday, first 2 days after ditching my wheelchair, I did a very modest 454 steps. Today, maybe a bit more? Good luck with your journey toward better health. Laurie

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@artist01

@athenalee Hi, Athenalee. Like you, I've got 3 or 4 autoimmune diseases and as you know from your extensive experience with them, there forever seems to be something serious to take care of! I totally agree with you that diet and exercise (walking, for you and I) are primary to our care. Morning is the only time that's good for my walking regime too, when my always low energy might be at it's best. Congratulations on doing two miles a day!! My best, before recent hospitalizations since April, was 1.3 miles, and I'm going to start today to work my way back up to that goal. As @jakedduck1 says, "inch by inch, one step at a time". Yesterday, first 2 days after ditching my wheelchair, I did a very modest 454 steps. Today, maybe a bit more? Good luck with your journey toward better health. Laurie

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You too Laurie! Be careful not to overdue it during your recovery. I have faith you’ll be beating me in steps in no time!

I just finished an interesting book called “The Hidden Half of Nature.” I’m a compost specialist and working on a healthy soils project. This book equates the role of microbes in building healthy soils to the role of similar microorganisms building healthy digestion systems. And, research that indicates a relationship between imbalances in our gut biomes to autoimmune diseases. Of course genes play a primary role, but I do believe healthy eating can lead to healthier digestive systems. And, hopefully some reduction in symptoms.

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@athenalee Good for you, working on such an important project. I've watched several online videos in regard to our digestive problems and biomes. I tried to switch some of my diet choices in that direction but my system is so wrecked right now I couldn't tolerate the recommended foods. I was trying such things as sauerkraut, dill pickles, yogurt, etc., but ran in to too much gut trouble to continue, although I can do yogurt and cottage cheese to some extent.
One of my 3 sons turned me on to it, and he's very actively involved with following the regime.
(He inherited my bad genes in that regard.) 😥 Take good care of yourself. Hugs. Laurie

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I have MCTD (mixed connective tissue disease) and getting a good amount of sleep makes a difference. Sleep hygiene, doing enough to physically tire myself during the day (to match my mind!), and, at bedtime basic cat/cow/child/cobra yoga and other stretches, leg edema massage and THC/CBD (helps vicious cycle of anxiety about sleeping) are basic. I also take percoset right before bed to help me stay asleep. I have a CPAP but doesn't help that part. I have Sjogrens also so hydration a few hours before bed helps; biotene for dry mouth and systane for dry eyes are beside my bed. I find a morning walk in sunshine helps, B-12 and D3 help, also. Usually, dehydration is the big thing for that sleep cloud. Otherwise, I know I have 3-4 great hours a day so plan around that. I did work fulltime until retirement.

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@athenalee

You too Laurie! Be careful not to overdue it during your recovery. I have faith you’ll be beating me in steps in no time!

I just finished an interesting book called “The Hidden Half of Nature.” I’m a compost specialist and working on a healthy soils project. This book equates the role of microbes in building healthy soils to the role of similar microorganisms building healthy digestion systems. And, research that indicates a relationship between imbalances in our gut biomes to autoimmune diseases. Of course genes play a primary role, but I do believe healthy eating can lead to healthier digestive systems. And, hopefully some reduction in symptoms.

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Look up Dr Terry Wahl's writings on mitochondria and autoimmune.

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