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.

@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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@windwalker just read this this Kindle put your name Skywalker in at first lol inflammation is tough did the Prednisone help? I use it when nothing else helps my rheumatologist suggested also ice for inflammation I found ginger-,Tumeric tea from Trader Joe's and Arnica tea for pain helps ,feel better

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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, @1942daa. We have an appointment with my mom's doctor tomorrow. We're still searching. I will raise tis as a possibility. She does have gastro issues too. Today, the appointment with the hematologist ruled out myelodysplasia as the most likely suspect, but her complete blood counts have been normal and even getting better, where as myelodysplasia progressively gets worse.

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Hi, I'm sorry that you're going through this
Fatigue is a hard one for me. I don't yet know what is wrong with me so I don't have any treatment yet. So, I used to be able to work all day. Manuel labor, carrying 90 pounds down 2 flights of stairs ( I only weigh 110 myself), tending to the garden, doing work with concrete, etc.. but now days watering the garden makes me ready for a 2 hour nap.
My only coping method right now is rest and when I do feel good I only do a quarter to a half of what I would normally do so that the next day I don't feel as bad. I try to do lots of self care too. Like baths every night, face masks, even just shaving my legs and little things like that help.
I know I've worked too hard that day when my vision and thoughts go fuzzy at sundown and nothing makes any sense..

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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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@1942daa, my mom's doctor agreed with the hypothesis of possible GI bleeding. We're investigating further.

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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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Hi guys I've only joined a few days ago and finding my way around all the boards. One of my health issues is severe fatigue. But since I've been taking guarana, my fatigue has lessened to such a noteable degree that I have 5 days or so without it has made me realise just how much my days up and about depend on them. If you're caffeine sensitive you may not be able to tolerate, or cut in half, or quarters, the tablets.

They're a natural form of caffeine but for me it's not a jittery fast hyperactive energy, it's a good steady flow of increased energy, that allows me to do more things without exhaustion. It also motivates me, which is a big thing when a person is ill with pain as well as chronic fatigue. Hope this helps, I would try a small dose first but increase if you find you're struggling with still much lack of energy.

q10 too is brilliant, but that's very expensive for the amount I need to take to help my exhaustion. Thinking of you all xx Linda

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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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Hi sweetie. Personally I find that Guarana or Q10 both help such a lot. Read up about them and adjust the amount you need to help you have a steady flow of natural energy. Q10{in uk} is much more expensive however for me both products help with consistency of maintaining more or a least twice as much energy so I can actually get out of bed, do some jobs or hobbies, and feel as though I've actually accomplished something each day. X

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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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@vibranthropesounds like you live in England ?

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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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Hi, I wonder if the Guarana might further deplete your adrenal glands. I know that the temptation to reach for anything that will make you feel better and give you energy for the day is huge, but I would ask someone with a Nutrition Background - that person would probably Not be an Allopathic Doctor cause they don't seem to understand the relationship between what you put in your body and how you feel. CQ10, on the other hand, while being expensive, actually provides more energy to your cells, increasing your overall ATP - from Wikipedia - "ATP synthase is an enzyme that creates the energy storage molecule adenosine triphosphate (ATP). ATP is the most commonly used "energy currency" of cells for all organisms. It is formed from adenosine diphosphate (ADP) and inorganic phosphate (Pi)." I wonder if one could get some kind of prescribed CoQ10 that could be less expensive that way. Just a thought. Robbinr

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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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@robbinr that's a good question I,'ll have to research it.As of right now I drink green tea with binding and it helps.

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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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@that's ginsing in green tea

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