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.

@johnbishop

Hello @johnjames — I have no experience with iron iv treatments other than knowing it's for treatment when your body doesn't have enough iron which can cause anemia. I did find a good overview on the Cleveland Clinic's website here:

https://my.clevelandclinic.org/health/treatments/14571-iron-intravenous-iv-infusion-as-anemia-treatment

Were you diagnosed with low iron?

John

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@lioness I would be sure to empty your cache before you begin posting (for more info, just ask) Do you use a Mac with safari or a PC with Windows ?When I first started, I forgot that we need to be sure that we address using the @ sign and then all lower case. And I forgot several times at first. i’m no great expert, but I have someone close to me who is, so if I can help, I’ll try.

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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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I have just been diagnosed with lung cancer. I thought it was Sjogrens. Need surgery next week, starting with biopsy. I have Psoriatic Arthritis, Sjogrens, IBS, hypothyroidism.

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@mamacita

I admire the person you have become. Your story is so sad, and for you to even be able to put it into words is nothing less than a miracle. You are such a strong person. Dare I say "inspiration." My childhood had some similarities with yours. I had a psychiatrist one time tell me that my life sounded to him like someone raised in some kind of evil, cultish commune. I had great difficulty finding things to do that gave me joy. I couldn't wrap my head around what happy felt like. Thankfully, I am further away from the person I used to be. I have a thousand and one interests. Some of my painful conditions are under control now. But what makes me the happiest is helping others who are hurt, discouraged, sad, or depressed. I was in such a dark place for so many years. I will never stop trying to listen when others need someone. We are not alone. And the Universe is full of love for each and every one of us. I am so proud to meet you on here. Thank you for sharing.

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@mamasitalucita Thank you for being on Connect. Your posts mean the world to other people. I can see that you turned out to be a kind and compassionate person despite the adversity you were raised in. I am sending you a cyber hug, did you get it? Also, I think your message was intended for @donno. In order for him to directly see this, please put his @name at the very beginning of the post like I did on this post to you. You need to do this with every reply to others.

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@lioness I am windwalker, not windward.

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@lioness

@johnbishop just posted my reply to windward but message came on saying We,re sorry but an issue creating this comment please try again . This is frustating

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@lioness I think @windwalker may have figured out why you received the error on your post.

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@johnbishop

Hello @johnjames — I have no experience with iron iv treatments other than knowing it's for treatment when your body doesn't have enough iron which can cause anemia. I did find a good overview on the Cleveland Clinic's website here:

https://my.clevelandclinic.org/health/treatments/14571-iron-intravenous-iv-infusion-as-anemia-treatment

Were you diagnosed with low iron?

John

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@gemmax I have a Kindle but I did just empty the cache,files and checked for virus which I had it cleaned Its funny because it won't work ,then next morning it post through fine ? The kindle is Amazon and Google

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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'm so sorry to hear about your lung ca. Are they just doing a biopsy ? I have information if you believe in holistic health There,s a herb astralagus that's suppose to be good for Cancer and also lemon rind not the juice as the rind has the lemon oil in it grate it and put it on everything Blessings to you

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@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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@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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@donno this post meant for you. I agree. You know, you could copy and paste the things you share with us to your cyber 'notebook' and olah you have pages for your book.

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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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@gemmax, please note : the @ name you posted was dunno instead of donno. The name will show in blue when it is correct. No worries, we all started out this way! Love!

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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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@lioness I took astralagus too for awhile. It is supposed to be very helpful. I was too infected by mac for it to work for me. I think now that I don't have an active infection, it could be helpful.

Liked by lioness

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@lioness

@johnbishop just posted my reply to windward but message came on saying We,re sorry but an issue creating this comment please try again . This is frustating

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@johnbishop just got this and I think that maybe it thanks

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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.

Jump to this post

@windwalker888 For me I'm going to try ashawanga it's suppose to be good for our brain and I need some help in this area .

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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 Thank you for the note. I do not like getting someone’s name wrong.

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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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Hi @marylou705,

Just wanted to let you know that we, the Connect community, members in this group and elsewhere, are there for you to lean on, to listen, and to encourage you as you stand up to your diagnosis. I was also wondering if you've viewed some of the incredible discussions in the Lung Cancer group on Connect? https://connect.mayoclinic.org/group/lung-cancer/

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