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.

@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

Cultivating the attitude of gratefulness is important for those of us dealing with chronic illnesses. Thanks for the reminder, Terri!

Teresa

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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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@lioness, Well , it is day four and still incapacitated from pinched nerve. I was in tears this morning due to extreme pain. Fortunately I had some Kleenex in my robe pocket as I could not get up to get one. Three hrs later and the pain meds have kicked in enough where I could get up and walk. I am not easily beaten, so I am sure that I will use positive energy to vanquish this painful episode. I am sure it will just take time, patience, ice and heat, etc. But, I am not giving up on 'willing' it away mentally!

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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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@hopeful33250 Hi Teresa. Right, we don't need to look any further than the posts we read daily to see that there is greater suffering out there. Even though my lungs are shot; I am doing so much better and have a greater quality of life. I owe that to Dr. Leventhal at Mayo in JAX. ❤

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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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@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 @windwalker,

The body and the mind are close connected, and we often think of wellness in terms of physical wellness. Of course, this is important, but mental wellness affects physical wellness, and vice versa. I'm a firm believer that human connection, helping others, is as good for you as it is for those you are helping. And what better place than Connect? You've been so effective and meaningful with members in the MAC group, and I sincerely hope you feel better soon.

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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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@kanaazpereira Thank you Kanaaz. I am working on it!

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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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May 8th, 2018

Thank you for your information. Hopefully it will bear fruit so my life will have a chance of improvement.
@donno, what symptoms did you have that led to the retro-peritoneal fibrosis diagnosis?

-Kidney failure, liver failure, high blood pressure, painful urination, scrotum swollen 3-4 times regular size, chronic flank & groin pain, pale yellow skin & eyes, dehydration, vomiting, high fever, delirious, migraine, high white cell count, severe anemia, high kreatin (sp?) levels, exacerbated symptoms from previous diseases and injuries (among other mental & physical insults**). I went to my closest large Medical Center and repeatedly told "Go home, you have a urinary tract infection," and treated me as if I was only there for the narcotics.

Did you have to get a MRI or a biopsy?

-I cannot take an MRI due to my pacemaker. I had several TIAs, (mini-strokes), and a heart attack brought on by improper meds, (no longer on market), stress, arrhythmia, anemia, swollen heart sack, and other childhood anomalies**. I have had 15-18 CAT scans in the last 18 months and I don't how how many in the last 10-20 years. Mother & Father died of cancer, sister of diabetes.

-(**) – Born in 1956, I am a child abuse survivor; In infancy, I was smothered to unconsciousness, allergic to nearly EVERYTHING, chronically banged my head to sleep, insomnia, asthma, both my older sister & I were physically/emotionally tortured, had un-diagnosed ADHD, memory lapses, night terrors, bed-wetting, chronic fatigue, un-diagnosed pneumonia, risked exposure by running away from home a dozen times, set neighbors house aflame, killed and abused small animals, endured other bodily infections untreated, chronic stomach pain with acid re-flux, (ulcers), a couple of attempts at suicide by drinking toxins, all before becoming ten.

-Age ten to 18 I drank almost daily and smoked 1.5-2 packs of cigarettes a day. I stole, ran away, skipped school barely passing despite teachers saying I was intelligent, articulate, but unable to focus, lacking concentration -(deemed 'acting up'). Beaten up daily by class bullies for being too weak and too smart . In my teen age years I was inhaling toxins like airplane glue, spray paint cans, de-greasing solvents until drugs came around. I used and abused all but drew my line at cocaine, heroin or anything by needle. I have never suffered from any addictions thankfully. I gave all this up when my mother who had various cancers throughout my life, died at 48 leaving me totally alone at 18. I grew up and worked at 3-4 jobs abstaining from all evils for years until illness caused several major surgeries, (perforated ulcer, repair, vagotomy, and hietal hernia).

-I consider it a miracle to not have evolved into a serial killer or sexual deviant. My 140 IQ got me almost through 2 years of college, (illness & finances forced me to quit), and completed a trade school. Currently happily married 12+ with 5 kids between us and ten loving grandchildren I would do anythinbg for.

-I suffered from depression my entire life thinking my family was right, I believed I WAS evil, stupid, ugly, lazy and worthless. The stress the surgeries and subsequent financial ruin put on me finally made me snap. Nervous breakdown – twice. I went in-patient and was given electro-shock therapy, (1st time without my consent****), and then zombie-fied for years on mind numbing medications believing Psychiatrists know what they're doing.

**** multiple sessions of shock treatment caused more severe memory lapses, more poor decision making and concentration difficulty. When my wife picked me up I asked, "Whose kids are you babysitting?" In tears, she croaked, "Yours."

– A biopsy would be too little too late. I was quickly advised to 'get my affairs in order'. I didn't expect to wake up from the radical surgery removing dead organs and wrapping some of the remaining dying ones with tissue from elsewhere supposedly non-adhering to scar tissue. I lived 2 years with hoses protruding from my rear flanks to bags strapped to my legs, and 8 years of immune-suppression medications that rose from $24 to almost $900 a month.

Are you taking any medications while you wait to be seen at Mayo Clinic?

-I take 19 prescription and 14 supplements daily.
– I have volunteered what little
energies I have gaining signatures for New Approach Missouri trying to
get Medical Medical on the November ballot. I believe that had I had access to those products I would have suffered much less from PTSD, stress, avoided medications and botched spinal surgeries saving me years of quality life, untold money and the affections of my family who, in our ignorance, didn't understand what was wrong with me. Doctors and illnesses have taken everything from me. I'm too old to get excited enough to mentally snap, but early dementia has been mentioned, so there's that.

-My immediate problem is that scar tissue has caused a narrowing of my small intestine. Plaque or some food residue builds up and frequently, completely blocks my bowels. The pain is horrific and nothing ANYONE can do will prevent it. All dietary restraints and supplements have failed. All they can do is put me on IV, control the pain and give me time to reboot my intestinal system.

-I have returned to the hospital at least every 4-5 months and lately as frequently as 36 hours. They don't know what to do with me at Kansas University Medical Center. They don't dare risk a surgery without incurring the wrath of RPF on my 1.5 kidneys and other over-stressed organs. I can't relive the horrors of last 8 years again, and I won't do that to myself or my loved ones. We are essentially financially ruined. I would rather 'Kavorkian' myself out than live through another hell like that. I can't bear the burden this has put on my body, my mind and my family.

DonnO

—– Forwarded Message —–

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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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Sometimes after treatment it takes awhile for the nerve to calm down think positive and Ice it ice takes out inflammation ,heat brings blood to service to start the healing process.Did he tell you to come back?sometimes it takes repeat treatment,hang in there ,look at my back it took about 1 1/2 weeks for it

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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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@lioness Hi. I have been alternating heat and ice all day. I also started on a 5 day run of tapered prednisone. My back feels very inflamed and angry.

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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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@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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@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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@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 @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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@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

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

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