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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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Thank you for all of this great new information. Some of this I have tried or heard about, but you have explained this so that I understand it.
Also, understanding that I am ultimately in charge of my healthcare and know I cannot rely on anyone, including doctors to know what is best for me.
I do very well with a schedule. I have found that as a teacher, it is much better for me to keep my schedule of bedtime, physical activity, and eating habits the same or close, when I can.
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5 ReactionsI don't have anything to add to this because it sounds like you're much further in this journey that I am. However, someone above commented about good sleep, and I do notice that when I can be on a regular schedule as much as possible with bedtime, waking, showering, what I eat, time of day I take meds, etc, the better I feel.
I teach, so when we are on breaks I can get really out of whack and usually my EBV will spike in both August and May. Could be something in that, who knows. I wish I had something to share that would be new for you to try. Keeping you and all of us in my prayers. This has been the best blessing for me in 20 years. Finding others that are trying to find the answers.
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2 ReactionsYou are doing well. Nobody can do it like you can.
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1 Reactioni am sure you are correct. lack of sleep to me is the number one on the list for creating big problems with what we are suffering with and will create other problems. sleep, sleep, sleep.
sorry to reply so late but just saw your post today. i have seen many people with depression and many people and doctors agree that in a huge percentage of people they go together. could this be part of the auto-immune sickness?
Marylou8 here. I'm prepared to go along with that theory.
I have been out of town and unavailable to post. I am rereading everyone's posts to keep up and hopefully continue to educate myself as well as share anything that could help someone.
Has anyone added to or joined the group that has autoimmune issues before/after Roux N Y gastric bypass or an abdominal wall reconstruction with mesh?
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1 ReactionI was able to turn in a written request to Mayo to hopefully get in and see someone, but I was turned down. I worked my first full week teaching last week, and I have been in bed all weekend exhausted. My bruising, lack of appetite, and joint pains have been so much worse. I ended up catching a virus and missing my first day of work. That was such a huge blow for me, I am sitting here this morning, absolutely heartbroken that I have been resting now for four straight days and still feel exhausted and no better than I did Friday when I came home.
My friend says I should have my doctor give Mayo a call, but I don't believe I can go there. I am just trying to put one foot in front of the other. It seems like each day I have started working full-time, I must drink several energy drinks and take four Rhodiola's a day to keep going. This helps till I stop them on the weeken and crash.
I have been blessed with such a wonderful group of students and co-workers.
I have noticed a a few new things that haven't happened before. My left ear has been killing me this weekend, like an earache, but it isn't one.
My left side itches quite a lot at out of the blue times. My left leg will twitch when I'm resting. Does this make any sense to anyone?
Me too. I would like to know where to buy these supplements.
@johnwburns , Hi there. My daughter, who is 30 yrs old, has zero energy, and was born that way. It has been sad to see her not join in things or do physical outdoor things. She simply does not have the energy. She has severe Raynaud's Syndrome, which is an autoimmune disease and it is probably secondary to other underlying syndromes like Scleroderma. I have often wondered about a mitochondrial disorder as well. She lives on Adderall, which is counter-productive for the Raynaud's, but she cannot function without it. I have tried to get her to seek medical attention and further testing; but she never gets around to it.I worry constantly about her. Any input for me?