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JohnWBurns (@johnwburns)

Autoimmune Diseases and Fatigue

Autoimmune Diseases | Last Active: Aug 16, 2021 | Replies (501)

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@colleenyoung

John, I’m so glad you started this discussion specific to fatigue. As you know my mom suffers from fatigue and we’re still trying to get to the bottom of the cause. I’m tagging other members on this discussion in the hopes that they’ll share their experiences with autoimmune disease and fatigue.

@robbinr @jharsh @dawn_giacabazi @flowerbeauty @jillnc @kyjeanne @blindeyepug: John asks, Do you experience fatigue? How has it impacted your life and how do you deal with it? Have you found anything that you are sure mitigates it?

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Replies to "John, I'm so glad you started this discussion specific to fatigue. As you know my mom..."

People say such and such “ruined my life”. Well fatigue “ruined” a good part of mine and that is said without melodrama. I’m sure that other folks can say something similar. At some point it becomes indistinguishable from what people describe as depression. Unfortunately, remedies for depression don’t always work for fatigue. Looking forward to hearing some takes on it. Never know what you’ll find.

Im 53-4 I cant even clean my house my fatigue is so intense I spend a lot of my time researching to beat fatique let u know if I find anything out Best to all Dee

I agree. But you need to try to move and not succumb to the pain. I am not, and understand will not ever be, the same as I used to be before the downward spiral of my health. However, I know I could be so much worse. Took me a long time to learn how to pace myself. Move enough to help but not do too much to where I flare and hurt too much to move at all! You can feel better – never the same, but better. Walking or swimming is a must, though. You have to move – even though I know it is really, really hard at the beginning. And try your best to ignore “friends” and family who don’t understand. Try giving them some literature to read about your chronic illnesses. If they still are difficult, I just wouldn’t bother much with them any more. Forums like this are helpful because we have been there, done that (and that and that) and understand. Know you are not alone and there is hope. Just don’t give up!

Sorry to say you and all on Mayo Clinic is my only support I have and very greatful thank you all Rosemary and Collene are great people and all of you who post and reply thank you with love and prayers to all Deena

I am so sorry, I have missed a lot of posts on this thread due to issues of my own. You have some autoimmune diagnosis, correct? If so, what is it if I may ask, and is it being treated? There is no quick fix for fatigue, but there are some ways to optimize your life.

I am so thankful for you and all of you who share your journey. I have felt so alone, judged by so many, and lost so much of my life due to numerous active EBV diagnosis, complications from my gastric bypass since 2002, more doctors than I ever want to see again, and twice truly wanting to no longer live.
This group is amazing. I can’t say enough how thankful I am.

I think the obvious underlying cause of fatigue is non-restful sleep. I’ve tried just about everything (magnesium, melatonin, various amino-acids, warm milk-which works surprisingly well sometimes) but I resorted to sleep meds. Now I have trouble getting up, but when I do get up, I’m pretty functional. Sometimes just talking myself through fatigue helps. I have a list, and I have to do the list. But when fatigue wants to win, it does. Magnesium is helpful, but it is easy to get too much and then the tummy trouble start again.
Try everything that cannot hurt you. Examine your sleep. Apnea plays a huge role from what I understand. Any drugs you take for a condition will impact your sleep. Make good sleep a priority. Allow yourself to rest, and sometimes the body responses positively.

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.

You are doing well.  Nobody can do it like you can.

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 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?

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