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 group.

I have sleep apnea too. Waiting for the machine to be delivered with O2 supplement. We live at above 6,000 ft and have very little humidity. We have a humidifier in the bedroom. Have had a mouth device for a couple of years.

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@adelecj57

I hear you on the weight gain. I know I used to eat tons but since being diagnosed with MP i have not been but the weight keeps coming. This I think worries me the most.

Adele

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Hello, @dennisl27, @adelecj57, and @marylou705,

Do take a look at this recent story published on Sharing Mayo Clinic, titled “Research forges path to effective treatment for sclerosing mesenteries”
http://mayocl.in/2i5EIlB
I hope you will find it encouraging.

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@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?

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I am so thankful for you and all of you who share your journey. I have felt so alone, judged by so many, and lost so much of my life due to numerous active EBV diagnosis, complications from my gastric bypass since 2002, more doctors than I ever want to see again, and twice truly wanting to no longer live.
This group is amazing. I can’t say enough how thankful I am.

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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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Do you take a magnesium supplement? If so, of you don’t mind sharing, what is it? Has it helped you?

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@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?

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I think the obvious underlying cause of fatigue is non-restful sleep. I’ve tried just about everything (magnesium, melatonin, various amino-acids, warm milk-which works surprisingly well sometimes) but I resorted to sleep meds. Now I have trouble getting up, but when I do get up, I’m pretty functional. Sometimes just talking myself through fatigue helps. I have a list, and I have to do the list. But when fatigue wants to win, it does. Magnesium is helpful, but it is easy to get too much and then the tummy trouble start again.
Try everything that cannot hurt you. Examine your sleep. Apnea plays a huge role from what I understand. Any drugs you take for a condition will impact your sleep. Make good sleep a priority. Allow yourself to rest, and sometimes the body responses positively.

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I have tried Magnesium in a number of forms. I have a Magnesium oil that can be mixed with massage oil and rubbed into sore places. I find if I use the straight oil it makes me itch. There is a powdered supplement with Magnesium which is fun because when you put it in warm water it bubbles like a witches brew. Magnesium needs to be taken with Calcium and Potassium because they are all work together. You know when you are full up on Magnesium when your bowels go loose…D-Ribose is helpful also!

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@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?

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Thank you for all of this great new information. Some of this I have tried or heard about, but you have explained this so that I understand it.
Also, understanding that I am ultimately in charge of my healthcare and know I cannot rely on anyone, including doctors to know what is best for me.
I do very well with a schedule. I have found that as a teacher, it is much better for me to keep my schedule of bedtime, physical activity, and eating habits the same or close, when I can.

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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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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.

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@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?

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You are doing well.  Nobody can do it like you can.

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i am sure you are correct. lack of sleep to me is the number one on the list for creating big problems with what we are suffering with and will create other problems. sleep, sleep, sleep.

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@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?

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sorry to reply so late but just saw your post today. i have seen many people with depression and many people and doctors agree that in a huge percentage of people they go together. could this be part of the auto-immune sickness?

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@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?

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Marylou8 here.  I'm prepared to go along with that theory.

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