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.

marye2 | @marye2 | Jun 25, 2021

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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marye2 | @marye2 | Jun 25, 2021
In reply to @athenalee "You too Laurie! Be careful not to overdue it during your recovery. I have faith you’ll..." + (show)
@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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1 reply
marye2 | @marye2 | Jun 25, 2021
In reply to @artist01 "@athenalee Hi, Athenalee. Like you, I've got 3 or 4 autoimmune diseases and as you know..." + (show)
@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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There are PT stretches to strengthen weak areas (glutes, hamstrings, piriformis, etc) that would be another way to increase strength over time without pain or injury. I can do them on my bed or on the floor. I went to a manual PT. Suggest carrying a walking stick incase you lose strength along the way. Online, I like Dr Jo.

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athenalee | @athenalee | Jun 26, 2021
In reply to @marye2 "Look up Dr Terry Wahl's writings on mitochondria and autoimmune." + (show)
@marye2

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

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Thanks! Just checked her website, looks interesting. I do a mostly paleo diet, but I don’t eat beef or pork. And, I do have some whole grains. But, I’ll take a listen to her videos.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 28, 2021
In reply to @ktgirl "Maybe I missed it but where can I find this diet? I'm desperate!! Just had surgery..." + (show)
@ktgirl

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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Ktgirl, @sonia0 made reference to the ketogenic diet or Keto for short. It is a low-carb, healthy fat diet. You can learn more about it in this group:
- LCHF Living & Intermittent Fasting https://connect.mayoclinic.org/group/lchf-living-intermittent-fasting/

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ktgirl | @ktgirl | Jun 28, 2021

Thanks I'll check it out.

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bct | @bct | Aug 13, 2021
In reply to @suzieflynn "im desparete to talk to someone with sps stiff person syndrome" + (show)
@suzieflynn

im desparete to talk to someone with sps stiff person syndrome

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I would love to speak to you, I'm Belinda.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 13, 2021
In reply to @bct "I would love to speak to you, I'm Belinda." + (show)
@bct

I would love to speak to you, I'm Belinda.

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Hello Belinda @bct, Welcome to Connect. You will notice that we removed your telephone number in your reply to @suzieflynn. We did this to protect your privacy since Connect is a public forum and can be viewed by anyone on the Internet. Members can use the private message feature on Connect to exchange contact information securely. How to use the Send Private Message feature is found in the Get Started on Connect guide here: https://connect.mayoclinic.org/get-started-on-connect/#send-private-message

Do you mind sharing what questions you have about stiff person syndrome so that other members can share their experiences with you?

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bct | @bct | Aug 13, 2021

Thank you for trying to protect me, I just wanted to speak to a person that was seeking someone else that has SPS.

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1 reply
bardhyl | @bardhyl | Aug 15, 2021
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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Fatique is always with my eyes. Once in awhile I have strong fatigue and have to take the day easy. Last tiime my eyes weren't tired was in the 1980s.

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