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JohnWBurns (@johnwburns)

Autoimmune Diseases and Fatigue

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

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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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Replies to "Fatigue/Lack of energy plus extreme belly bloat plus memory/recall deficit have totally taken away my life..."

I can’t relate to belly bloat but I have tried everything except healing touch. Every possible supplement but I lay off of them now since I’ve had 2 bouts with cancer and per the oncologist supplements are Russian roulette. I guess I’m lucky in that I know the root cause, Sjogren’s with sleep apnea tossed in as a bonus. They don’t know why it causes fatigue but just does. Its not inflammation since I have no significant inflammation. It might be cytokines like IL-6 or IL-1. Lots of suspicion there but no proof as yet. Modafinil does help but there’s a price, as with all medications. The longer you use it, the shorter the effect. Can also cause severe headaches or migraines. Also very expensive if not covered. I don’t want to give the wrong impression. I’ve stitched together a decent life in spite of the fatigue, but it could have been a whole lot easier. Do you have any diagnosis that may point to a root cause such as thyroid disease, an autoimmune problem?

About 7 years ago I was diagnosed with Celiac disease and 2 years ago I was told I have Sjogren’s. Apparently it is not unusual for the 2 to go together. I have had these 2 problems for many years but the doctors just didn’t figure it out. Long before Celiac was diagnosed, I had horrible bloating, cramps and tummy pain so bad that at times I couldn’t stand up straight. Soon after I went gluten free that problem went away. John, have you tried that for your belly bloat? I also have chronic back pain which is another unrelated problem but not an insignificant one, and with dry mouth and eyes from the Sjogren’s and then add in the back pain I would say I have “fatigue”. There are days when I don’t feel like doing anything but sitting. I am a dedicated quilter and when I get together with my quilting friends or when I am working on a project at home I feel so much better. My sewing room is my “therapy room”. I think having a good hobby you enjoy and get together with friends is the best treatment anyone can have. Just my 2 cents.

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

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

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!

I don’t have anything to add to this because it sounds like you’re much further in this journey that I am. However, someone above commented about good sleep, and I do notice that when I can be on a regular schedule as much as possible with bedtime, waking, showering, what I eat, time of day I take meds, etc, the better I feel.
I teach, so when we are on breaks I can get really out of whack and usually my EBV will spike in both August and May. Could be something in that, who knows. I wish I had something to share that would be new for you to try. Keeping you and all of us in my prayers. This has been the best blessing for me in 20 years. Finding others that are trying to find the answers.

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

@upnorthnancy Yes, can relate. I too have tried just about every therapy imaginable. I will tell you this and if you have already tried, then it still is not wasted time to share what we know. What has really helped my belly bloat is when a gastro doc told me that most people become lsctose intolerant as the years past. The symptoms are bloat, belly pain, and general gut misery! This happens everytime one eats any dairy product, even a little in some other food. I use lactaid milk and almond milk, but i also chew a lactaid tablet at every meal..This simple cure after years of extreme belly problems! Fatique is difficult for us all and often people just think that we are lazy…ha! “walk a mile in our shoes”. I take nap every day about an hour after lunch 1-2 hours. I also take a fairly short walk…easy going…usually before bedtime. I have thrown out any “expectations”. If I feel like doing something, I do it when I feel like it.Please keep writing, I think that your prayers are working because you are here where you can find lots of support.Be blessed!

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