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.

@jennifer2010

I watched a great documentary about autoimmune and tooth fillings especially root canals. It was amazing I often wonder about all of this.

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@jennifer2010 Thank you for posting about the documentary about autoimmune and tooth filings, root canals. It is of great interest to me since I have many AI diagnoses. My dentist told me 2-3 years ago that my teeth are cracking and he doesn't understand it because it only a few years prior that he told me that my teeth were in such good condition that I would never lose my teeth. Now I am at risk to start losing them. Would you mind to share more information about the documentary? I would really appreciate it.

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@jennifer2010

I watched a great documentary about autoimmune and tooth fillings especially root canals. It was amazing I often wonder about all of this.

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@jennifer2010, I searched and thought this ("Root Cause") might be the documentary you referenced: https://toothbody.com/youll-want-to-check-out-this-new-documentary-on-root-canal-teeth-the-oral-systemic-link/. I have not watched it so I have no opinion about its validity.

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@meemer

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.

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@meemer you seem to have found the right answer for yourself! Being alone or not doing something gives one lots of time to obsess or worry about what bothers them. I know I’m better if I just go outside and chat with people. And the idea of quilting is great, I’m also a quilter but haven’t been able to do anything. 2 weeks ago, I had a dose of rituxan and now I want to sew! It makes me think of things other than being tired. I’ve even thought of trying to put my thoughts of the past year into an art quilt, but nothing has come up yet.
I’m sure glad you have a hobby and friends! Sure makes a difference!

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@lioness

Im grateful today for our weekend discussion groups makes the time go by faster and we get to know each other better Thanks for starting this Gratitude discussion group @debbraw

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@lioness - what a beautiful thought you shared! I'm grateful for YOU too - and the great contribution you make to our Gratitude Group. Thank you.

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@johnwburns

Seems like all you'd need from the 9/11 clinic is a sophisticated toxicology screen, not an autoimmune diagnosis. Toxic effects are a realm unto themselves. You should probably check that in parallel.

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I started my autoimmune journey in 1984 & just found out in Jan 2019 I have sjogren's. I had an extensive infection in 1983 after surgery w/ the largest amount of antibiotics ever given in the history of this hospital (really messed my stomach up) & I also had mercury poison in 1985 (Methyl mercury poison) from a decayed copper filling. I know that the combination of these 2 illnesses brought on autoimmune illness. I am still in shock that I just found out this year that I am dealing w/ autoimmune disease. But I have chosen natural route w/ functional med dr. & have had good results so far. I must add this is not the 1st time going natural route as I did so whenever I had BID episodes in the past. I really think I had an overgrowth of candidia in my gut & sinuses that really caused this to explode for me. I have leaky gut from all the antibiotics & from all the leakyness I have discovered that I have autoimmune flare ups when my stomach acts up. Have changed my diet to include protein shakes every morning, took oil of oregano & grapefruit seed oil for 2 months morning & afternoon & have had great results w/ facial swelling going down, eye irritation almost gone & fatigue 70% better. I have to stay away from all sugar (except a small portion of fruit), red meat & gluten. I have NEVER taken an autoimmune meds as I believe these will mess me up even more! I can not stress the importance of seeing a functional wellness dr. or natural path dr. or even a nutritionist. I have been slammed w/ illness for most of my adult life but am sticking to the natural route as it works if you find the right help. One last thing, western med. says you have to me on their meds. to feel better & it may mask symptoms but investing in a cure, getting to the heart of an autoimmune disease is hard work but can be done. I hope at the least this gives you some something to be encouraged about.

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@ginjax28

I started my autoimmune journey in 1984 & just found out in Jan 2019 I have sjogren's. I had an extensive infection in 1983 after surgery w/ the largest amount of antibiotics ever given in the history of this hospital (really messed my stomach up) & I also had mercury poison in 1985 (Methyl mercury poison) from a decayed copper filling. I know that the combination of these 2 illnesses brought on autoimmune illness. I am still in shock that I just found out this year that I am dealing w/ autoimmune disease. But I have chosen natural route w/ functional med dr. & have had good results so far. I must add this is not the 1st time going natural route as I did so whenever I had BID episodes in the past. I really think I had an overgrowth of candidia in my gut & sinuses that really caused this to explode for me. I have leaky gut from all the antibiotics & from all the leakyness I have discovered that I have autoimmune flare ups when my stomach acts up. Have changed my diet to include protein shakes every morning, took oil of oregano & grapefruit seed oil for 2 months morning & afternoon & have had great results w/ facial swelling going down, eye irritation almost gone & fatigue 70% better. I have to stay away from all sugar (except a small portion of fruit), red meat & gluten. I have NEVER taken an autoimmune meds as I believe these will mess me up even more! I can not stress the importance of seeing a functional wellness dr. or natural path dr. or even a nutritionist. I have been slammed w/ illness for most of my adult life but am sticking to the natural route as it works if you find the right help. One last thing, western med. says you have to me on their meds. to feel better & it may mask symptoms but investing in a cure, getting to the heart of an autoimmune disease is hard work but can be done. I hope at the least this gives you some something to be encouraged about.

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@ginjax28 You're right about the functional and environmental medicine approach to autoimmune disease. I've had some similar issues with gluten issues and a leaky gut, and after a stressful event of having Carpal tunnel surgery years ago, I developed a lot of food and gluten allergies and I am restricted in what I can eat. I also developed Hashimoto's thyroid disease (autoimmune) while I still had 8 old silver amalgam fillings in my mouth, and the antibodies against my thyroid were off the charts and too high for the blood test to read. After I had all the filings replaced by a biological dentist, my thyroid antibodies dropped significantly and were much reduced. In the years since, my thyroid function actually has improved. The best approach is to prevent the problem rather than take medicine for the symptoms.

Here is a book that talks about the causes of autoimmune diseases that you might find interesting. I've read one of her other books and it was excellent. https://donnajacksonnakazawa.com/autoimmune-epidemic/

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Thanks for the book referral! I'm glad you had your amalgam filings removed. I did way back in the 80's as one of my mom's best friends "Hal Huggins" was exposing this dirty little issue. Not to many people back then would believe him but as he kept speaking out, more and more people started to show symptoms of heavy metal exposure & Hal was then writing books, etc. However Hal died a couple years back. I hope his legacy is continuing on. Also, mercury is very, very hard to detect in the body - hair analysis is best. Mercury is linked to so many autoimmune diseases. It saddens me that the government keeps a big lid on this info.

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@ginjax28 Glad to hear your better I also look into essential oils for help I mix my own from what I read from the website .For pain Lavender @Peppermint is good

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I use flax seed oil for spine pain (just started) as my natural path dr advised me to. Oils are very important for recovery & I am glad you are using them. Black seed oil. oil of oregano has done wonders for me as far as inflammation.

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@ginjax28 I use essential oils too but I’ve not heard of black seed oil. I use deep blue and a blend called Past Tense for hip/sciatica pain. Do you apply topically, diffuse or put in capsule to take orally?

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