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.

No I have not been tested for EBS I get skin lesions on arms and legs

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@soteloli

No I have not been tested for EBS I get skin lesions on arms and legs

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@soteloli Talk to your Dr about viruses EBV and H S virus this one gives you coldsores and chickenpox

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@lioness

@suecreader I just started having hip/sciatica pain I,ll have to try Past tense is this a blend?

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@lioness: It is a blend yes….. smells a bit like wintergreen….I hope it helps

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@suecreader

@lioness: It is a blend yes….. smells a bit like wintergreen….I hope it helps

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@suecreader Goodmorning Thanks I do use Wintergreen Alcohol but will look for thinks

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I have autoimmune deficiency with diabetes, vitaligo and hashimoto's markers. I also have Sleep Apnea and had the sleepinspire device implanted for that. However, even after all of that, I still feel tired almost all of the time.

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@rjwilliajx

I have autoimmune deficiency with diabetes, vitaligo and hashimoto's markers. I also have Sleep Apnea and had the sleepinspire device implanted for that. However, even after all of that, I still feel tired almost all of the time.

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Hello @rjwilliajx, Welcome to Connect. I also have sleep apnea and have been using a CPAP for a little over a year. I still feel tired most of the time. Many people I've talked with that have sleep apnea and are using a CPAP regularly have told me that it takes about a year or so before you start seeing the benefits. I'm hoping that's the case for me.

How long have you had the Inspire device implanted for your sleep apnea?

There is also another discussion started by @jonjacobjingleheimerschidt where @wgatap21 and other members are looking for members who are using the Inspire device. You may want to share your experience with Inspire here:

> Groups > Sleep Health > Inspire Upper Airway Stimulation
https://connect.mayoclinic.org/discussion/inspire-upper-airway-stimulation/

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Anyone here diagnosed with autoimmune fatigue and or Chronic Fatigue?

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Hello. I am in the middle of dealing with autoimmune issues. The most likely culprit is Sjogren's (because of high SSA & SSB antibodies). I have decided to try a supplement called "Balance of Nature" My husband swears that it has helped with his fatigue and pain and wants me to try it as well. At this point I'm willing to try just about anything. Fatigue and dry eyes/dry mouth as well as abdominal pain are my main complaints. If the Balance of Nature supplements help me I will make a point to let you know. Keep your chin up. I know it's hard sometimes. I've found that forcing myself to stay active even when I don't feel like it is much better in the long run than surrendering to inactivity. Hoping things improve for both of us.

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@socalgirlntx

Hello. I am in the middle of dealing with autoimmune issues. The most likely culprit is Sjogren's (because of high SSA & SSB antibodies). I have decided to try a supplement called "Balance of Nature" My husband swears that it has helped with his fatigue and pain and wants me to try it as well. At this point I'm willing to try just about anything. Fatigue and dry eyes/dry mouth as well as abdominal pain are my main complaints. If the Balance of Nature supplements help me I will make a point to let you know. Keep your chin up. I know it's hard sometimes. I've found that forcing myself to stay active even when I don't feel like it is much better in the long run than surrendering to inactivity. Hoping things improve for both of us.

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Thank you! Please let me know if Balance of Nature supplements help you combat fatigue! Also where do you get them? I suffer with many of your symptoms also. I have PBC and fibromyalgia.

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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 used D-ribose & couldn’t take very long because I’d get severe hypoglycemic attacks. Has anyone had that happen? My blood sugar & A1C are normal.

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@johnwburns

Thanks but no “belly bloat” issues and have been checked for celiac.

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I have sleepiness every so often where I have to lie down and sleep or I'll fall down! It usually only lasts the one day. I have fatigue most days but I handle it by doing a little then resting a little. You can't over do it!
Be kind to yourself. The housework will still be there tomorrow so just plan your week by doing doing a little each day. If I over do it then I have rest for one or more days!

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@mijosmom19

I have sleepiness every so often where I have to lie down and sleep or I'll fall down! It usually only lasts the one day. I have fatigue most days but I handle it by doing a little then resting a little. You can't over do it!
Be kind to yourself. The housework will still be there tomorrow so just plan your week by doing doing a little each day. If I over do it then I have rest for one or more days!

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Hi @mijosmom19, Welcome to Mayo Clinic Connect. Thank you for sharing your experience with fatique. May I ask how you found Mayo Clinic Connect?

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