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.

@jewel8888

@donno. I am new to group here too, I read your post and it saddens me with how cruel of a start you had going up and then all the medical problems on top. You are a beautiful caring person and lovingly your family. I am praying your trip to Rochester

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Can this be edited to @donno. ?

Liked by Donno

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@kanaazpereira

Dear @donno,

You have my heartfelt thanks for being so open, and for sharing your story. I know it must have taken an unthinkable amount of courage and vulnerability to reveal your past – I am so glad you've joined us here, and before anything else, I want you to empower yourself with hope and with the knowledge that the Connect community believes in you – we are on your team.

I'm tagging @lisalucier and Mentor @hopeful33250 – and I sincerely encourage you to join this discussion in the Mental Health group on Connect:
https://connect.mayoclinic.org/discussion/long-term-depression-1/
You will see that you are not alone, but in the company of some fantastic, resilient members – @parus @peach414144 @jimhd @mamasitalucita @vllynn @charlie75 @anniegk @amberpep and many more, who've shared their experiences, their struggles and have been an immense source of support for others.

I'm also tagging @ginpene05 @idnas @kag13 @loriel59 @nonnie1 @donsbo @farmerj since they've all written about bowel obstructions caused by adhesions or scar tissue; I'm confident they will have more insights to share.

@donno, I don't see it as a miracle "to not have evolved into a serial killer or sexual deviant," but I see it as your strength to not allow your past to define you. So please keep talking and sharing – because we will keep listening and caring. Your story matters — and so do you.

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Thank you, Kanaaz. I have followed and signed up for the link you provided. I am Rehab Medicine so probably know too much for my own good!

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@kanaazpereira

Dear @donno,

You have my heartfelt thanks for being so open, and for sharing your story. I know it must have taken an unthinkable amount of courage and vulnerability to reveal your past – I am so glad you've joined us here, and before anything else, I want you to empower yourself with hope and with the knowledge that the Connect community believes in you – we are on your team.

I'm tagging @lisalucier and Mentor @hopeful33250 – and I sincerely encourage you to join this discussion in the Mental Health group on Connect:
https://connect.mayoclinic.org/discussion/long-term-depression-1/
You will see that you are not alone, but in the company of some fantastic, resilient members – @parus @peach414144 @jimhd @mamasitalucita @vllynn @charlie75 @anniegk @amberpep and many more, who've shared their experiences, their struggles and have been an immense source of support for others.

I'm also tagging @ginpene05 @idnas @kag13 @loriel59 @nonnie1 @donsbo @farmerj since they've all written about bowel obstructions caused by adhesions or scar tissue; I'm confident they will have more insights to share.

@donno, I don't see it as a miracle "to not have evolved into a serial killer or sexual deviant," but I see it as your strength to not allow your past to define you. So please keep talking and sharing – because we will keep listening and caring. Your story matters — and so do you.

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@marylou705,I know what you mean about knowing to much I'm a retired nurse
Good luck

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@donno

Thank you all for your kind responses. Most of the suggested options and therapies are not familiar to me, however my memory is not very reliable, especially in the short term. If anyone would be so kind as to provide links for me directly I will attempt to save them for time when I have sufficient physical & emotional energies to delve into them. I am hindered by cataracts so I no longer drive confidently, spend much time on my computer, or do much of my beloved reading as all becomes blurry and headaches ensue if I push it.
I took meditation in the 80's and some sort of ‘stress/heart rate reduction mind control’ therapy thing, but couldn't continue as my neurons were firing so often I couldn't hear myself think when I tried. I do recall I wore a headpiece and they were quite impressed I could raise & lower the sound tones and the light flashing speeds. I never understood what the benefit was and blood pressure didn't become such a concern for me until about 2000.
My high school and college writing teachers did give favorable marks for my writing. One remarked on a submission that I had the ‘Great American Novel’ inside me. I have no training per se. I had little to no friends until becoming a hippie, so I had a book in my hand constantly reading everything I could find of interest to me. I considered it my 'escapism' from reality to fall into 'Middle Earth, Deep Space, Science and History.' I have more trivia knowledge than common sense, can’t find where I parked my car or if I took the bus.
The major life experiences I've described are ingrained because I have told & re-told them to professionals so many times – to little avail.
More's the pity because last fall when faced with a health crisis, in a moment of rare clarity, I vowed to write my life story for several reasons:
One being that my wife, as a past Historical Cemetery Board Member and as her family were city fathers of Kansas City, we are honored to have allotted space at historical Union Cemetery. Because of their family plot, they ask when interned, we provide our life's story to their members of the Historical Society – for Posterity.
There are several historical figures buried there including a Revolutionary Soldier, many Union & Confederate Soldiers, Chinese Railway Laborers and just about everyone who has Kansas, Kansas City, Missouri notoriety, a neighborhood, boulevard or park named after them.
Her family once owned the land that became Westport, where the Oregon, Sante Fe, and California trails were outfitted, contracted guides and provisioned by her industrious ancestors. Years back it was discovered they provisioned the infamous 'Donner Party', were the first to attempt salvage of the sunken Steamboat Arabia, and owned the popular landmark, the Westport Inn after the Boone family, but before Irishman Randal Kelly made it famous. But I digress.
The second reason I want my life recorded is so my descendants will know me and how much I cared for their world which they would inherit. I know my lineage back to an Andrew Reed of 1792 Kentucky and would give anything to know of his life and whether he immigrated from Scotland, Ireland or England. My own children do not seem interested in history much like my prior generation, much to my distress. I feel I failed them all in many ways. What amends can I make?
I was born before any satellites entered orbit. I saw the Beatles. I protested the Vietnam war tearing up and returning my draft card with declaration as a conscientious objector who would not report when ordered. I donated my time in lieu of money to innumerable causes, xmas for the poor charities, for disease cures, children’s charities, etc. I witnessed the post MLK assassination riots. I tried to educate my kids to be ecologically and socially responsible for their planet and fellow man lest their grandchildren be faced with strife, if not extinction from famine, political upheaval, or unpreparedness for natural disasters, etc. I witnessed so much of history.
Like Philip K. Dick’s replicant, I mourn; All those moments will be lost in time, like tears in rain. Time to die.’

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@windwalker Thanks for info and sorry about other name I don't like to get names wrong

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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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colleen: I am 75. I had daytime fatigue. I could sleep soundly for several hrs at 9am after a good nights' sleep. With several other complaints I was referred to a gastro dr. I was diagnosed with anemia and UC, apparently internal bleeding of which I had no outward symptoms. It has taken almost 2 yrs to regain a full day of life. the anemia is corrected but UC is auto immune which is unusual at my age. I thought my symptoms were due to old age. daa1942

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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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@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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