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.

@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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I so agree that it seems like you have to suffer a long time and go through several doctors and rounds of testing before you find a diagnosis. I was finally diagnosed with RA, fibromyalgia and Sojourn’s syndrome after five years! I even went to special diagnostic hospitals. I have had these conditions for 10 years now – actually 15 since it took five to get any one who knew what was going on with me (all started around age 40). I am doing better. I have good and bad days, but more good. It took a long time to come to grips that I would never be as active or feel as healthy as I used to. I pray you find answers and relief soon. Don’t give up! It does get better. Maybe not great, but better.

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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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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!

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@robbinr

I have started taking D-Ribose with Magnesium and Malate (Again) in the afternoon. I have slept beautifully for three nights in a row. Wow!
We forget and then we remember what helped last time the fatigue got so bad. I also think I will try adding Glutathione also. It is supposed to be the mother of the Amino Acids, and a deficit can affect sleep, energy, etc.

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Thanks for site!

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@sherids

With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal with now. Short term memory not like it used to be, inability to carry on lengthy conversations/discussions, in ability to handle any form of stress, disassociation esp when out in public, & so many other tidbits that come back to my belief if I could get a strong arm the fatigue the mental issues would go away. Any suggestions out there for me?

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Take a vaca from your issues maybe a yoga or tai chi class massage therapy you need to destress music? Something calming you deserve to do it for your self

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@robbinr

I am iron-heavy in my blood. Totally not anemic. However, since I had my son when I was 34, and got into a relatively low impact wreck. I cannot sleep, I ache all over, and my energy level is basically in the toilet. Swimming is the Best exercise! There is no way out of this thing – only through it.
RR

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Wish I had a pool my home is built into a mountain so we have 8 man jacuzzi I excercise in it strech reverse crunches their is one at the gym Im going to push myself their today yoga to start than weight lifting lite weight lots of reps Have many illnesses but I am losing muscle mass rapidly I dont think I ever digested fat well I will find out if I have malabsoption? Good luck with swiming ! Thats great!!

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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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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

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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I have PBC an auto immune and an undected stone in pancreas pushed in during a EUS test they recently seen residue was in horrible pain Drs and husbsand and family thought I made this up in my head look ok you must be? How fustrating now I am skin and bones they belive me ? I totally understand I went from doing every thing to not being able to take care of my home I I belive I have malabsoportion Good luck and prayers to you !!!

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@upnorthnancy

Fatigue/Lack of energy plus extreme belly bloat plus memory/recall deficit have totally taken away my life as I knew it. I have been to Mayo multiple times. I have tried supplements up the wazoo. I have changed my diet to keto. I have tried acupuncture and healing touch and prayer. Cannot think of anything I have not researched and tried. No positive changes noted just gradually gets worse. Can you relate? Is modafinal the only thing that helps for you?

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I have those things, but the fatigue and memory problems I think is my fibromyalgia (“fibro fog”) and my bloat is from IBS, which can go along with fibromyalgia. So sorry you have not gotten any relief. Walking and swimming help me. Sleeping on temperpedic mattress helps me. I try to stay out of extreme weather – too hot or too cold. Weather seems to flare my issues. I have never tried modafinal. I, too, restrict what I eat but it doesn’t seem to help. Sending hugs!

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@kyjeanne

Fatigue has been a major impact. I had to quit my job last October due to extreme fatigue. I have Sjogrens, Hashimotos, Fibromyalgia and many other illnesses. I’ve found that since I don’t have to force myself to get up for work, I can sleep later and rest some during the day as needed. That has been my life saver. Plus, I have a very supportive husband. I have Restless Leg Syndrome and a lot of aches and pains, which make it difficult to sleep. I use 5 pillows at night, which helps, and take Ropinorole (for RLS) and Trazodone (for sleep). When I do sleep, it seems I dream a lot. Is dreaming a problem with anyone else?

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I have RA, fibro, Sjogren’s, RLS and spinal stenosis. I am blessed to still be able to work part time. I have worked for the same attorney for 36 years. He is semi-retired now, so we don’t get into the office until noon and I work until 5. I take Trazodone only for my RLS. I love my temperpedic mattress but also use several pillows. I have extremely vivid, colorful dreams but have always had them. Even when I was very little.

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@sherids

With my fibromyalgia my extreme fatigue is at the root of my mental issues I deal with now. Short term memory not like it used to be, inability to carry on lengthy conversations/discussions, in ability to handle any form of stress, disassociation esp when out in public, & so many other tidbits that come back to my belief if I could get a strong arm the fatigue the mental issues would go away. Any suggestions out there for me?

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Hugs and prayers to you!

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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I know how you feel been ill since 2009 I am 53 now? I notice when Im in good company I forget about my health issues! Find some good company it helps bless u Deena

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@nanke99

I am new and just posted some of my story in someone else’s post. My fatigue and weakness has really destroyed the life that I had, and has
created much depression. I am barely active, my mind is constantly in a fog, and can’t foresee ever being able to pursue any of my passions or hobbies. I often cannot spend time with friends. I can’t imagine it ever getting better but only worse and I am 50 years old. I fee like my health is fading and going downhill rapidly. So there ya go! That’s how I feel… Kinda hopeless.

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There is a book about a female explorer, Isabella Duncan, (I think). She was sick every time she was in England.
But if she went to Mongolia (first white female to travel there alone) or the Rockies (first woman to scale Longs Peak)
Or if she was in Hawaii (she loved it) – she was well, hail, and hardy.
If she was with her primary family, she would lapse into pain and indolence.
Shake it up! Seek a Shaman…find another path.
I’m one to talk.. I am bonded with golden chains to the tech industry, which is slowly killing me, for another few years.
But in my dreams, I dream another life!
Sometimes they are so vivid, I wake up confused as to where I need to go and what I need to do.
R

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