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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Interesting artic!e John I'm having problems to post reply It won't post I wrote several time to get but it won't post ,do you know any reason for this?

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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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Hi @lioness do you mean this post was what you were trying to do and tried several times before it posted? I don't know of any reason without more specifics. I know when it's unexplained on the Internet it's usually blamed on an Internet Storm…☺

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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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I really don't know Colleen explained it to me once but my Sr.Moment kicked it can't remember what she suggested

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@kanaazpereira

Hello @donno,

Welcome to Connect. I'm so sorry to hear about all that you are going through, and can only imagine your worry and frustration! I'd sincerely encourage you to view this incredibly informative group on Connect, "Visiting Mayo Clinic" https://connect.mayoclinic.org/group/traveling-to-mayo-clinic-minnesota/ Feel free to scroll through the discussions and join in with your questions.
Here's one that you might find helpful
– Getting your first appointment https://connect.mayoclinic.org/discussion/getting-your-first-appointment/

I'm tagging @amkaloha @bernese53 @v1crew @me67 @tomewilson @jamienolson and Mentor @kdubois as they may have more insights to share.

I would also like to share the following resource:
Mayo Clinic in Rochester has Concierge Services to help make your trip go smoothly. They provide information about travel, lodging, Mayo Clinic and community resources to plan your visit. And it’s free.
Contact form: http://bit.ly/2nM3mr0
Hours: Monday-Friday, 8 a.m.-6 p.m. CST by phone, 8 a.m.-5 p.m. in person
Location: Mayo Building, Lobby level, International Center
Email: concierge@mayo.edu
Phone: 507-538-8438

@donno, what symptoms did you have that led to the retroperitoneal fibrosis diagnosis? Did you have to get a MRI or a biopsy? Are you taking any medications while you wait to be seen at Mayo Clinic?

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Oh my gosh I'm so sorry for all you,ve gone through this shouldn't happen to anyone Might I ask have you helped yourself through meditation? Or Tapping ?Nick Ortner uses tapping on depression,medical issues and just how to not let the past define yourself Please check his website out maybe it will help you Tapping.com you are a very strong person to have gone through all that you have

Liked by Donno, Gem

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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

Jump to this post

No I don't think so unless it becomes a problem Kids will have a temp one day next day it's gone ,We at our age revert back to kids ,as everything in our body Chemistry needs more, vit., minerals especially magnesium ,if it gets to be a problem an endocrinologist would be the Dr.to help you My body temp has always been 96.7 sometimes it is what it is

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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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@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

Jump to this post

@lioness Try typing the person's @ name at the beginning of your text such as I did here. See the @lioness? This directs your texts to the person you are corresponding with, and ties it to the thread.

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@oregongirl

And I love sauerkraut… Boy I hope it works.

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@lioness, see how this saurkraut message is floating unattached to the conversation you were in and also not directed to the person you were speaking with? I read this and said huh? Then I hunted around and found the rest of the conversation. Try to remember to address each reply with an @name. It took my awhile to catch on to this as well when I first joined.

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@oregongirl

And I love sauerkraut… Boy I hope it works.

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Do u do it at beginning of end of 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

Jump to this post

@windwalker888 did it work

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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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@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

Jump to this post

@lioness Yes it did! Congrats!

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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.’

Jump to this post

@dunno i agree with your teacher. I still think that there is a book inside you. Your moments in time will never be lost. Why? Because there are others who shared your story; every step of the way. None of us have any way of knowing how many lives that we have touched and how many lives those have touched and so on. I have written a book on my family genealogy and it was great fun. It is a little large (HAHA) at 600+pages. I have a lot of editing to do. I just had so many stories to tell. I am often surprised at the lack of interest in what I call the old ways and the stories and belongings of our ancestors that many of the young families who began their grownup lives during the time of 9/11. It as if they feel a lack of time;that they feel they must have eveything now, everything new. When I think about the tiny house I first lived in and how hard I worked. before I had much of anything,the differences become very clear. We paid for our kids to go to school,helped them all along the way. In my young years, my parents couldn't do that. I worked for what I wanted myself. It was the times. I am so sorry that they had to live through that terrible uncertainty, but if we did our best and loved our children then we can't be blaming ourselves.Most of them work so hard now they seem to never stop.I do think that as they grow older their interest in their heritage will grow. Now there you go touching my life with your words, making me think! Keep right on doing it. You are a born writer. Have a wonderful evening.!

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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

Jump to this post

O.k.thanks now if I could figure out why sometimes when I post , it wont

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@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

Liked by Donno

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