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.

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)

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

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)

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.

athenalee | @athenalee | Jun 26, 2021

In reply to @marye2 "Look up Dr Terry Wahl's writings on mitochondria and autoimmune." + (show)

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.

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, @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/

ktgirl | @ktgirl | Jun 28, 2021

Thanks I'll check it out.

bct | @bct | Aug 13, 2021

In reply to @suzieflynn "im desparete to talk to someone with sps stiff person syndrome" + (show)

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

John, Volunteer Mentor | @johnbishop | Aug 13, 2021

In reply to @bct "I would love to speak to you, I'm Belinda." + (show)

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?

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.

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)

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.