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 Support Group.

@grokking

At the risk of being reported or ??, I have to share a little here. I recently went through months of torturous insomnia. I don't know if it is related to my autoimmune polyneuropathy--I seem to have autonomic involvement along with the motor neuron degeneration, sensory stuff too--I figure every thing is part of the disease--but it was a devastating development. Zero sleep at times, sometimes a few hours, or usually a couple zzz's after hours of wakefulness, then awake again until morning, trying to grab a couple hours before noon. I was very compromised, brain worse than ever. Yes, that bad hangover feeling on top of cognitive problems and physical exhaustion. Along with the usual fatigue, I was a zombie and unable to do anything but lie around. Hard to even meditate or read. "We" tried drug after drug, some very scary heavy-duty ones. Occasionally one would work a couple times, only to fail shortly thereafter. It was absolutely nightmarish, unreal trying to slog though day after day. And then a friend gave me some Simpson oil, which is a medical cannabis concentrate developed by a guy for his skin cancer (cured it). I had zero confidence it would help wit sleep. Then...first night--zzzzz. All night. Second night-- sleep. It has been months and is still helping. I sleep!!! I'm going to switch to a more CBD form as it has no "high" at all, just good cannibinoids. I actually don't get high from the full flower concentrate I use now for some reason (it is slow acting, taken orally couple hours before bed), but don't want or need the THC it contains. Anyway, it may not be for everybody, obviously so if medical cannabis is not yet legal where you live. I might add that the pain and nasty inflammation in my knees, which are scheduled for replacement surgery this year, is gone, and I have cut narcotics from Fentanyl patch and 40 mg oxycodone every day to no Fentanyl and maybe 10 mg a day oxydone a couple days a week. Mostly taken now only for longstanding crumbling spine and stenosis. My knees are still destroyed, of course, but I can bear weight on them again! For the first time in five years, I walk without a cane. I am still sick from the mystery polyneuropathies, but jeez...I feel like I am experiencing something miraculous. If you are interested, The CBD Project has a lot of information online. Again, CBD's won't get you high, but the different cannibinoids therein are turning out to have some great medicinal effects and are being researched like crazy now. For good reason. I hope this helps you and others, and you can obtain as much relief as I have.

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Hi again. I looked at that store online. All CBD. I wonder if any products have a dab of THC for the boost it provides. Is that the only dispensary where you live? I'm sure they'll help you out, in any case. Best wishes...

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@grokking

At the risk of being reported or ??, I have to share a little here. I recently went through months of torturous insomnia. I don't know if it is related to my autoimmune polyneuropathy--I seem to have autonomic involvement along with the motor neuron degeneration, sensory stuff too--I figure every thing is part of the disease--but it was a devastating development. Zero sleep at times, sometimes a few hours, or usually a couple zzz's after hours of wakefulness, then awake again until morning, trying to grab a couple hours before noon. I was very compromised, brain worse than ever. Yes, that bad hangover feeling on top of cognitive problems and physical exhaustion. Along with the usual fatigue, I was a zombie and unable to do anything but lie around. Hard to even meditate or read. "We" tried drug after drug, some very scary heavy-duty ones. Occasionally one would work a couple times, only to fail shortly thereafter. It was absolutely nightmarish, unreal trying to slog though day after day. And then a friend gave me some Simpson oil, which is a medical cannabis concentrate developed by a guy for his skin cancer (cured it). I had zero confidence it would help wit sleep. Then...first night--zzzzz. All night. Second night-- sleep. It has been months and is still helping. I sleep!!! I'm going to switch to a more CBD form as it has no "high" at all, just good cannibinoids. I actually don't get high from the full flower concentrate I use now for some reason (it is slow acting, taken orally couple hours before bed), but don't want or need the THC it contains. Anyway, it may not be for everybody, obviously so if medical cannabis is not yet legal where you live. I might add that the pain and nasty inflammation in my knees, which are scheduled for replacement surgery this year, is gone, and I have cut narcotics from Fentanyl patch and 40 mg oxycodone every day to no Fentanyl and maybe 10 mg a day oxydone a couple days a week. Mostly taken now only for longstanding crumbling spine and stenosis. My knees are still destroyed, of course, but I can bear weight on them again! For the first time in five years, I walk without a cane. I am still sick from the mystery polyneuropathies, but jeez...I feel like I am experiencing something miraculous. If you are interested, The CBD Project has a lot of information online. Again, CBD's won't get you high, but the different cannibinoids therein are turning out to have some great medicinal effects and are being researched like crazy now. For good reason. I hope this helps you and others, and you can obtain as much relief as I have.

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Thank you. Medical Marijuana is legal in AZ with two dr. consents and all, but I am sure I could get it. I am just concerned with all my tests right now. Plus I was a teacher and afraid if I go back and all, but at this rate it unfortunately doesn't look like I am going back to work anytime soon....I will let you know if I try it!!

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Please do! Are you worried about drug testing at your teachingg job? (And thank you for teaching!! The most important job there is...plus on this site!) I don't know how CBDs appear on a tox screen. They are distinguished from THC, for sure. Maybe not an issue at all. I wish you the very best, and please feel free to private message if need be. Cheers.

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Thank you again, and I will keep you updated!!! Plus, don't think I need to worry about teaching....unfortunately. Need to get better first!

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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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Absolutely. In fact, I use the same word, "constitutionally," as the fatigue encompasses more than "just" being tired.There's a whole constellation of awfulness.

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I have Sjogern,s and use Biotene mouthwash ,toothpaste also I was told when you drink water swish it around in your mouth a few seconds this makes the mucus lining of the mouth more Moist

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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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Haven't done D-RIBOSE going to add it have you found 5-HTP also to be helpful?

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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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Go to a health food store or online to go Vitacost.com. For my fibromyalgia I take Fibro Malic It has your magnesium in it plus other good stuff for fibromyalgia.

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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? <br><br>

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Epsom salts is good for fibro Soak in it before bed ,helps relax the muscles plus gives you magnesium.

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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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Natural remedy for,
let cramps,drink some pickle juice ,it works A friend of mine carried mustard packets and ate when she had a cramp

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