1. < Autoimmune Diseases

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.

mayfleur | @mayfleur | Jul 11, 2018
In reply to @colleenyoung "John, I'm so glad you started this discussion specific to fatigue. As you know my mom..." + (show)
@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?

Jump to this post

Thank you for that. I do get tired of having to research something in every post.

REPLY
mayfleur | @mayfleur | Jul 11, 2018
In reply to @colleenyoung "John, I'm so glad you started this discussion specific to fatigue. As you know my mom..." + (show)
@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?

Jump to this post

No idea what binding is.

REPLY
mayfleur | @mayfleur | Jul 11, 2018
In reply to @robbinr "I have started taking D-Ribose with Magnesium and Malate (Again) in the afternoon. I have slept..." + (show)
@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.

Jump to this post

May try these. Thanks.

REPLY
mayfleur | @mayfleur | Jul 11, 2018
In reply to @robbinr "I have started taking D-Ribose with Magnesium and Malate (Again) in the afternoon. I have slept..." + (show)
@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.

Jump to this post

All in with you on the magnesium. I've used Ancient Minerals Magnesium lotion for some time, however, it may help me get to sleep but not for the whole night. Adding magnesium tablets helps.

REPLY
lioness | @lioness | Jul 11, 2018
In reply to @robbinr "I have started taking D-Ribose with Magnesium and Malate (Again) in the afternoon. I have slept..." + (show)
@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.

Jump to this post

@mayfleur another thing at night helps me is melatonin along with magnesium a d pain pill

REPLY
cinnamon215 | @cinnamon215 | Jan 12, 2019
In reply to @johnwburns "Seems like all you'd need from the 9/11 clinic is a sophisticated toxicology screen, not an..." + (show)
@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.

Jump to this post

Hello John, I am interested in your comment that toxic effects are a realm unto themselves. Do you have any resources about this that would help me understand more about toxic exposures?

REPLY
2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 12, 2019
In reply to @cinnamon215 "Hello John, I am interested in your comment that toxic effects are a realm unto themselves...." + (show)
@cinnamon215

Hello John, I am interested in your comment that toxic effects are a realm unto themselves. Do you have any resources about this that would help me understand more about toxic exposures?

Jump to this post

Hello @cinnamon215, I'm not sure if @johnburns is still active on Connect but maybe I can help. Here are a few references that may provide you with more information.

Foundation for Peripheral Neuropathy - Toxins That Can Cause Peripheral Neuropathy
-- https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/toxins/

New York Dept of Health - What You Know Can Help You - An Introduction to Toxic Substances
-- https://www.health.ny.gov/environmental/chemicals/toxic_substances.htm

CDC - Registry of Toxic Effects of Chemical Substances (RTECS)
-- https://www.cdc.gov/niosh/docs/97-119/default.html

CDC - Skin Exposures and Effects
-- https://www.cdc.gov/niosh/topics/skin/default.html

REPLY
1 reply
lioness | @lioness | Jan 12, 2019

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

REPLY
1 reply
jennifer2010 | @jennifer2010 | Jan 13, 2019
In reply to @cinnamon215 "Hello John, I am interested in your comment that toxic effects are a realm unto themselves...." + (show)
@cinnamon215

Hello John, I am interested in your comment that toxic effects are a realm unto themselves. Do you have any resources about this that would help me understand more about toxic exposures?

Jump to this post

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

REPLY
2 replies
cinnamon215 | @cinnamon215 | Jan 13, 2019
In reply to @johnbishop "Hello @cinnamon215, I'm not sure if @johnburns is still active on Connect but maybe I can..." + (show)
@johnbishop

Hello @cinnamon215, I'm not sure if @johnburns is still active on Connect but maybe I can help. Here are a few references that may provide you with more information.

Foundation for Peripheral Neuropathy - Toxins That Can Cause Peripheral Neuropathy
-- https://www.foundationforpn.org/what-is-peripheral-neuropathy/causes/toxins/

New York Dept of Health - What You Know Can Help You - An Introduction to Toxic Substances
-- https://www.health.ny.gov/environmental/chemicals/toxic_substances.htm

CDC - Registry of Toxic Effects of Chemical Substances (RTECS)
-- https://www.cdc.gov/niosh/docs/97-119/default.html

CDC - Skin Exposures and Effects
-- https://www.cdc.gov/niosh/topics/skin/default.html

Jump to this post

Hello John, I am so thankful for your response with all those references. I will certainly check them out! I appreciate you!

REPLY
View MoreView Less
Please sign in or register to post a reply.