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.

lioness | @lioness | Jul 18, 2020

@becsbuddy Boy I don't know what's going on with me today nerves on fire in legs couldn't sleep last nite for nerves in arms something new . fatigue today all day At one point did fell pretty good so went for walk.Arthritis in hands getting worse Telephone call with rheumatologist on 3rd hope I will get some answers

suzieflynn | @suzieflynn | Jul 19, 2020

Does anyone have stiff person sydrome

John, Volunteer Mentor | @johnbishop | Jul 19, 2020

In reply to @becsbuddy "@deannweir I honestly don’t think the medicine is working. Darn, darn. I have an autoimmune disease..." + (show)

Hi Becky @becsbuddy, I think your neurologist is right about the prednisone causing fatigue. I was always tired and had to force myself into a "keep moving" attitude. Here's some information that you may find helpful from Medical News Today -- How to deal with prednisone withdrawal: https://www.medicalnewstoday.com/articles/322536

Hope you have a good day!

John, Volunteer Mentor | @johnbishop | Jul 19, 2020

In reply to @suzieflynn "Does anyone have stiff person sydrome" + (show)

@suzieflynn, There is another discussion here that you may want to read and meet other members discussing stiff person syndrome.

Stiff Person Syndrome: https://connect.mayoclinic.org/discussion/stiff-person-syndrom/

Have you been diagnosed with stiff person syndrome?

deannweir | @deannweir | Jul 19, 2020

In reply to @becsbuddy "@deannweir I honestly don’t think the medicine is working. Darn, darn. I have an autoimmune disease..." + (show)

What a bummer. I never got to the point of infusions. I guess I didn’t feel bad enough.

fighter | @fighter | Jul 19, 2020

There is a new medication out for excessive daytime sleepiness made by Jazz pharmaceuticals. FYI.

Becky, Volunteer Mentor | @becsbuddy | Jul 19, 2020

In reply to @fighter "There is a new medication out for excessive daytime sleepiness made by Jazz pharmaceuticals. FYI." + (show)

@fighter. I’m currently trying modafinil. Not too impressed. Are you using the one by Jazz?

Becky, Volunteer Mentor | @becsbuddy | Jul 19, 2020

In reply to @deannweir "What a bummer. I never got to the point of infusions. I guess I didn’t feel..." + (show)

@deannweir The infusions aren’t really a bummer—they are the only treatment for this chronic lymphocytic inflammation that I have . Very few people have this. I just thank God everyday that this drug exists (and the manufacturer pays for it). It’s still in a trial so the insurance won’t pay. 😑. Keep plugging along!

Becky, Volunteer Mentor | @becsbuddy | Jul 20, 2020

In reply to @johnbishop "Hi Becky @becsbuddy, I think your neurologist is right about the prednisone causing fatigue. I was..." + (show)

Thank you for the article @johnbishop . Saw the endocrinologist this a.m. He agrees that the prednisone plays a part in the fatigue as does the stress of the state of the world today. He wants me to slowly taper the prednisone and see him in 1 month. We’ll see!