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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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I have lived with fatigue after being diagnosed with Systemic Lupus Eurythamatosis in 1985 at the age of 24. (affecting kidneys and lungs) Since then I developed Sjogrens and after 6 surgeries, Short Bowel Syndrome.
I exercise daily (walking, rowing machine) but gently. And take a nap every day. When I have to skip the nap I pay for it the following day. Ropinerol helps with restless leg that I've had since I was 16. I take it at night and it also helps with sleep.
I just had to accept the fact that I only have so much energy and I choose where to put it. After the Short Bowel Syndrome surgeries I had to retire having worked part time before this.
I feel like I am the "walking tired." It sounds like many of you can relate to this!
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2 Reactions@kikib I sure dislike it when autoimmune diseases take all of our energy when we really need it to deal with the disease! Have you heard of the Spoon Theory? Here is a link to the discussion on the Spoon Theory:
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
Think you could use any of the suggestions?
Yes Becky! I love the spoon theory!
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1 ReactionHi John, in my 43 years I have never found any one thing that worked for me. I have tried so many natural and homeopathic ways, but to no avail. In the end I just realized that moderation and planning are the only things that are consistently helpful. I pick and choose what I want to do and find the best way to do it. Sometimes this means that I don't do anything for 2 or 3 days after but I have accepted that. Also found smiling and finding the good things to think about helpful to my mindset. Good luck to you.
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