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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@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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If this what you mean there is a way out of it.
http://www.irondisorders.org/hemochromatosis

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@barb54

I suffer from Anemia and Interstitial Cystitis. I take 4 Ferex Forte 150mg per day for the Anemia; the highest # I’ve reached is 11. My body simply doesn’t absorb iron. My first cousin has Lupus. Between the Anemia and the Interstitial Cystitis, I am exhausted. Additionally, I’ve had 4 bouts of pneumonia requiring hospitalization within the last two years, so I know my immune system is shot. I’m on 2 antidepressants, 1 anti-anxiety, B-Vitamin with Methylfolate, Probiotic, Magnesium, and three for the Interstitial Cystitis: Elmiron, Uribel, and Oxybutin. However, I am one of the lucky ones: Elmiron doesn’t work well for many suffering from IC, but it works wonderfully for me.
Additionally, I have a large cyst in my right kidney, 2 smaller ones in my left kidney, and for the second year in a row, 2 kidney stones. I’m now on Bactrim; hopefully these stones are small enough that they will pass on their own. Last year I was hospitalized for the extraction.
I am going to attempt to go back to swimming laps. That is a great stress reducer for me, and although it leaves me exhausted, I’m hoping that the additional exercise will help my body overcome these challenges. So glad to have found you!

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Hi @barb54, you may also wish to join this discussion “Interstitial Cystitis – I would like to connect with others” http://mayocl.in/2babJXN

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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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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

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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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Hows that work? I am badly fatiqued if you care to share ? Would be much appreciated thanks and Nothing to loose thanks good day Deena

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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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I control my edema aka belly bloat with Tumeric Curcumin bioperine I was on paleo auto immune diet and set off the worst fatigue I have put some Gluten free carbs back in my diet I feel better just 1 serving a day gluten free pasta or a wrap I have auto immune PBS and a stone in pancreas for 5 years before they found residue from stone passing which put me at highest risk for pancreatic cancer. I been taking astragulus root seems to give me a little energy or is it the carbs .Checking out magnesium seems 80% of population is deficent and #1 supplement in Japan ! Watch your salt intake it you bloat and lemon water is vital to keeping our PH up! Acid and sugar create a happy cancer envioment!

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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 understand I am relentless when it comes to feeling better! Dont give up keep moving forward there is got to be something over looked? Feel better payers for your well being 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 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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