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.

Colleen Young, Connect Director | @colleenyoung | Aug 16, 2021

In reply to @bct "Thank you for trying to protect me, I just wanted to speak to a person that..." + (show)

Hi Belinda,
You can connect with other people living with stiff person syndrome in these discussions:
- Stiff Person Syndrome https://connect.mayoclinic.org/discussion/stiff-person-syndrom/
- Stiff Person Syndrome: Want to connect with others https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

Linda Moross | @lmoross | Jan 27, 2023

I, like others here, suffer from fatigue. It is overwhelming and ruins my life. I have no energy and if very active suffer from post-exertional malaise. I have Polymyalgia Rheumatica, diagnosed almost five years ago. I have been on various amounts of prednisone ever since. After trying different treatments, my rheumatologist tried Actemra infusions and I am in remission! I am only on .5 mg of prednisone, soon to be totally off. However, my fatigue has not abated and even gotten worse since I had severe Covid in 2021. I believe I have long Covid as I have never regained my lost sense of smell and have some minor lung damage. I am wondering if I should be tested for Epstein Barr Virus which can be reactivated by Covid. I also wonder if I should request my adrenal glands be tested since I have been on steroids so long. I sleep so much, yet am always tired. Thank goodness I am retired. I would appreciate any response/comments. Thank you.

Lorena Egas | @lorena1egas | Jan 27, 2023

In reply to @lmoross "I, like others here, suffer from fatigue. It is overwhelming and ruins my life. I have..." + (show)

I have an autoinmune diagnosis. The biologic stop all symptoms but when I need to stop it or when I am close to the next injection (1 each month) I experience extreme fatigue (I can sleep the whole day). I need to stop activities and my work status suffers. I would like to know effective treatments and solutions for those days. I am already 2 years on remission but need my brain to be on and not off

Lorena Egas | @lorena1egas | Jan 27, 2023

In reply to @colleenyoung "John, I'm so glad you started this discussion specific to fatigue. As you know my mom..." + (show)

I would like ti reactivate this topic. I have an autoinmune diagnosis. The biologic stop all symptoms but when I need to stop it or when I am close to the next injection (1 each month) I experience extreme fatigue (I can sleep the whole day). I need to stop activities and my work status suffers. I would like to know effective treatments and solutions for those days. I am already 2 years on remission but need my brain to be on and not off

annewoodmayo | @annewoodmayo | Jan 28, 2023

I am in a similar situation. I would welcome any ideas on boosting energy.
Thanks in advance!

John, Volunteer Mentor | @johnbishop | Jan 28, 2023

In reply to @lorena1egas "I would like ti reactivate this topic. I have an autoinmune diagnosis. The biologic stop all..." + (show)

Hi Lorena @lorena1egas, While you wait for a reply from @lmoross, @marye2, @ktgirl and others, I thought I would share this article that seems to be discussing the fatigue symptoms you are having prior to your next injection.

-- Managing Fatigue and Biologics with Psoriatic Arthritis:
https://psoriatic-arthritis.com/living/fatigue-symptoms

joansmurphy | @joansmurphy | Jan 28, 2023

In reply to @lmoross "I, like others here, suffer from fatigue. It is overwhelming and ruins my life. I have..." + (show)

Yes, I would see an ENT doctor to be tested for Epstein Barr and others. Talk to your rheumatologist regarding an endocrine consult to check your adrenals.

Lorena Egas | @lorena1egas | Jan 28, 2023

In reply to @johnbishop "Hi Lorena @lorena1egas, While you wait for a reply from @lmoross, @marye2, @ktgirl and others, I..." + (show)

🙋‍♀️ hi @johnbishop I live in Ecuador I saw my rheumatologist last September at Mayo. I am reaching him through the portal but he never answers this specific issues. Other issues related to the use of canakinumab he answers but this topic: I NEVER get any answer at all

Linda Moross | @lmoross | Jan 28, 2023

My fatigue is constant. It is not just prior to my next infusion, it never abates. My infusion keeps me in remission from my Polymyalgia Rheumatica through the entire month. I don’t have any change of symptoms near the end of the month. I plan on talking to my rheumatologist more at my next appointment about testing my adrenal glands and for EBV. She and I have discussed my fatigue before and do question about its relationship to long Covid. I have been trying to find a new PCP doctor to also pursue the fatigue issue and having no luck. Cannot find any whom are accepting new patients in my area.
I have no helpful solutions for gaining energy and dealing with the fatigue other than I rest and sleep when needed. It definitely affects one’s life. I feel for all of you. Take care.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Jan 28, 2023

I have had autoimmune GI illness on and off for 13 years. My fatigue can be extreme, basically lying in my bed panting. After being evaluated on and off at Mayo I finally was treated with Imuran- the extreme fatigue disappeared. I have had a few episodes since beginning of the pandemic, but not continuing. Maybe response to Covid vaccines?
I was also diagnosed with sleep apnea. As you may know it leads to fatigue, at times extreme.
I also had taken steroids on and off early on- looking at photos of my face I was very puffy.
After treatment I was able to lose weight and discontinue CPAP.
If you think it could apply to you then please have a sleep study.