1. < Autoimmune Diseases

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.

Gem | @gemmax | May 9, 2018
In reply to @johnbishop "Hello @johnjames -- I have no experience with iron iv treatments other than knowing it's for..." + (show)
@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,@peach414144 Asking others about low body temperature is on my list of questions. I have never had chemo, but I am autoimmune and have diabetes and a number of issues. My body temperature is normally somewhere between 95.6 and 96.8. When it is at it’s lowest, about 95.6. I am so cold that I shake with chills. It can be 80 degrees outside and I’m inside with the heat on wrapped in blankets with a heating pad and drinking hot liquids. I’ve told the doctor. and he is good person. I think that he is just tired of me and my complicsted problems. Why do people have low body temp? Do I need to see any psrticular type of doc? Gem

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 9, 2018

@donno

As Kanaaz said in her post, I also admire the way you have shared with us your thoughts and feelings regarding your current situation as well as explained your childhood traumas. You have proven yourself to be a very resilient person who is a survivor. I so admire what you have accomplished!

I can understand your current frustration with life and the limitations that you face. I would also encourage you to read some of the posts that Kanaaz has recommended. We have many resilient Members who have posted about their past traumas and current struggles.

As you read the posts you will undoubtedly see that many members have used CBT, cogntive behaviour therapy. Have you ever read about this?

I am so glad that you have chosen Connect as a way to receive support and encouragement. I look forward to hearing from you again.

Teresa

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Mentor
John, Volunteer Mentor | @johnbishop | May 9, 2018
In reply to @johnbishop "Hello @johnjames -- I have no experience with iron iv treatments other than knowing it's for..." + (show)
@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

@gemmax @lioness and @peach414144 - years ago when my mother in law moved in with us it was a constant battle with the thermostat. It had to be 80 degrees year around. I was OK with it in the winter time but the summer I always escaped to the basement because it's cooler. Fast forward 30 years and I am that old person still in the basement and always cold even when it's warm outside. When I read your posts about low body temp it caught my interest because I've never checked mine other than when I had a fever. I did a quick search and found an interesting website on low body temperature. I couldn't find any related support information but it is something to think about.

Wilson's Temperature Syndrome:
-- http://www.wilsonssyndrome.com/low-body-temperature/

John

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Gem | @gemmax | May 9, 2018
In reply to @kanaazpereira "Hello @donno, Welcome to Connect. I'm so sorry to hear about all that you are going..." + (show)
@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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@donno I have been here a short time and just read your story. Your strength and courage in the face of such adversity is inspiring to say the least. You must have a very strong and good spirit to have survived all that you have. I confess by the time I finished your story, tears were streaming down my face, as I saw in my mind the child that you were, the young teen, the hopeful man,the patient with extremely serious illness and as I considered the evil and illness that you survived. Not tears of pity, but tears of love, tears of kinship. You are a valuable person,a survivor. Your story can give hope to others. Do you write? Would you ever consider buying a big fat journal and beginninng from your earliest memory and just telling the whole story? It is story of the human condition as well as the story of one strong, intelligent person and the life and choices he was given. Please keep writing and be blessed!

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 9, 2018
In reply to @johnbishop "Hello @johnjames -- I have no experience with iron iv treatments other than knowing it's for..." + (show)
@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

@johnbishop Thank you for posting this link. It was an interesting read. I forwarded it on to my daughter.

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lioness | @lioness | May 9, 2018
In reply to @johnbishop "Hello @johnjames -- I have no experience with iron iv treatments other than knowing it's for..." + (show)
@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

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?

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | May 9, 2018
In reply to @johnbishop "Hello @johnjames -- I have no experience with iron iv treatments other than knowing it's for..." + (show)
@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

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...☺

REPLY
lioness | @lioness | May 9, 2018
In reply to @johnbishop "Hello @johnjames -- I have no experience with iron iv treatments other than knowing it's for..." + (show)
@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

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

REPLY
lioness | @lioness | May 9, 2018
In reply to @kanaazpereira "Hello @donno, Welcome to Connect. I'm so sorry to hear about all that you are going..." + (show)
@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?

Jump to this post

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

REPLY
lioness | @lioness | May 9, 2018
In reply to @johnbishop "Hello @johnjames -- I have no experience with iron iv treatments other than knowing it's for..." + (show)
@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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