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Autoimmune Diseases and Fatigue
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.
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@deannweir What are you doing to try to mitigate the fatigue? Right now I assume you’re working from home like everyone. Can you take naps or rest periods? Can you work shorter hours? It must be so difficult to try and focus when your brain isn’t cooperating. I retired before I got this illnesses , thank heavens. But, you only have 18 months left! You can do it!
Talk with your doctor; maybe there is something, like modafinil, that will work for you
im desparete to talk to someone with sps stiff person syndrome
@suzieflynn did you see my previous post?
Here is a link to the post https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/?pg=27#comment-410308
It has a link to the discussion where you can meet members discussing stiff person syndrome.
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1 ReactionHave had MCTD for 24 years. Over time, I've discovered that non-processed diet/hydration and exercise matter in managing fatigue. I also have a cpap to help get good sleep at night, but using THC/CBD along with it to get solid sleep. My take is that, determining the right number of hours of sleep, and getting up after that for movement (stretches, daily walk), a meal, hydration will give me several hours of productivity at home. Naps I limit to 1.5 hours. Movement is important to relieve pain (stronger, more flexible muscles and tendons) and to make tasks easier. I worked fulltime until retirement and having nutrition and movement in place definitely made it possible.
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2 ReactionsHave had MCTD for 24 years. Over time, I've discovered that non-processed diet/hydration and exercise matter in managing fatigue. I also have a cpap to help get good sleep at night, but using THC/CBD along with it to get solid sleep. My take is that, determining the right number of hours of sleep, and getting up after that for movement (stretches, daily walk), a meal, hydration will give me several hours of productivity at home. Naps I limit to 1.5 hours. Movement is important to relieve pain (stronger, more flexible muscles and tendons) and to make tasks easier. I worked fulltime until retirement and having nutrition and movement in place definitely made it possible. You might add PT (manual, Rocobado trained) to improve your hip and back health.
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2 ReactionsI have Sjogren's and recently finished Cancer treatment. Fatigue is the most annoying of all the symptoms. I can deal with body aches. I am 72 and I still work. I too take Mondafil for work and special occasions when I need to stay awake. I also take tramadol for occasional pain (only at night) or I use Tylenol.
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1 ReactionI was just thinking: Is it possible that autoimmune disease would fight the Corona Virus better than a person without an autoimmune disease? Please excuse me if this is an ignorant question. Peach
Hi Peach @peach414144 -- I think the answer to your question is that if you have an autoimmune disease you are at a higher risk with COVID-19 than a person that has a healthy autoimmune system. Here's some information that you may find some explanations:
June 18, 2020 - Q&A: Overview of COVID-19 in Patients With Autoimmune Diseases: https://www.rheumatologyadvisor.com/home/general-rheumatology/qa-overview-of-covid19-in-patients-with-autoimmune-diseases/
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1 Reaction@johnbishop Thanks for the article, John. It was very good!
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1 ReactionThank you John Bishop for the information, Here is a good one. Went to the emergency room 8/1/20 for chest pain and was never tested for COVID. Am I wrong or what is the problem within my living area?