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.

Old Karl. My daughter who is 52 had also been diagnosed with RA. When she was young she was diagnosed with Lupis and Rainodges. (Sorry about Spelling). I asked doctor if RA can be inherited. He said no. That was yrs ago. I wonder if that had changed.

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@louferrigno

anybody out there? How do I know when I need to go to the hospital with flu

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@louferrigno

Sorry for the delay in responding. Some days I'm not up to going online.

The doctor told me that, if after the fever goes down and I start feeling better, and the fever returns, get to the ER.

I had a fever for around ten days and felt lousy for a week after that, but I didn't get a fever again.

I hope you're starting to feel better.

Jim

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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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I was diagnosed with West Nile Virus and Epstein Barr almost 3 years ago. My life has been a train wreak ever since! My blood work show the EBV is still "off the charts"!!! Done almost everything but nothing has worked!! Anyone have any suggestions?? At wits end…

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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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Hello @annie1234, welcome to Mayo Connect. Thank you for sharing your post. There is an active discussion for Chronic Epstein Barr on Connect here that you may want to read through:
https://connect.mayoclinic.org/discussion/treatment-for-chronic-epstein-barr/bookmark/?ajax_hook=action&_wpnonce=12a348c300

I’m tagging @clghanimo @jenchaney727 @suesiegel @arriba @copiela @jatl @cheryldotson @cummings3 @aman_23_23, who have all discussed Epstein-Barr Virus (EBV), and I’m hoping they will be able to offer some more insight.

Here are a few conversations on Connect that you may find useful:
– Chronic Pain members – Welcome, please introduce yourself http://mayocl.in/2tz0bcE
– I just need some answers!!! Please help me!!! http://mayocl.in/2uf42sH

More information from the National Institutes of Health on the Epstein-Barr Virus treatment:

Optimal Treatment for Chronic Active Epstein-Barr Virus Disease
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2776035/

I’m not sure if it is an option for you but if you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here: https://www.mayoclinic.org/appointments

John

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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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When I was 20 or so I had Mono Epstein Barr the Dr. gave me high-doses of vitamins not sure what they where as I was sort of out of it I had a high count and the rash with it.It was in my 40s I was diagnosed with fibromyalgia now at 75 I have fatigue almost all the time.Just started Cymbalta

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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, This is part of our lives. At least we can take naps whenever we wish. People don'r think we are lazy, just old

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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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We have tried to get our son an appointment at Mayo several times and he was denied for Epstein Barr?

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I was diagnosed with Sjogren's but I also suffer from depression and anxiety/panic attacks. I suffered from depression and anxiety most of my life (47 now) and I have never experienced Fatigue like this, EVER!!! I was diagnosed with Sjogren's in 2016 and that is when the fatigue hit. So I would say Sjogren's has something to do with it one way or another. Of course the depression and anxiety are at it's highest level, so I would say Sjogren's play's apart in that also. Just my opinion, having experienced chronic depression and anxiety and not having to deal with fatigue like this. Maybe it is different for everyone. I know it Sjogren's affect people differently.

I don't have a support system and like some people have posted, people really don't understand! fatigue has stole my life. I lost everything!! What I would like to know from others, is this. Does fatigue get so bad it feels like your body is going to shut down and you will die?? I don't feel that way all the time, but it gets pretty severe way to often. It scares me really. I don't really take anything at the moment because the medication they gave me did not sit well with me. Increased insomnia like never before. Couldn't sleep a wink for 4 days and thought I was going to go insane.. literally!! I did drop the dose but no change. My brain just wouldn't shut down. I did do some research on fatigue this whole time and I recently came across modafinil and I am so curious to try this. I can't handle this life with fatigue and I am desperate, as we all are!! Life sure is unfair!!

Anyhow I feel for anyone going through any illness and specifically Sjogren's because I can relate so well. I do hope we find our lives back and wish you all well…

Bill

Medication was plaquenil.

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Yes. I have had fatigue to the point where I figured I was dying. But I didn't. Diagnosed with Fibro over 20 years ago. You just push through. I hope someone with Sjogren's weighs in for you to compare notes with. It is another in the autoimmune bucket that is so hard to figure out. Regards,
Robbin

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@devonsdad2008

I was diagnosed with Sjogren's but I also suffer from depression and anxiety/panic attacks. I suffered from depression and anxiety most of my life (47 now) and I have never experienced Fatigue like this, EVER!!! I was diagnosed with Sjogren's in 2016 and that is when the fatigue hit. So I would say Sjogren's has something to do with it one way or another. Of course the depression and anxiety are at it's highest level, so I would say Sjogren's play's apart in that also. Just my opinion, having experienced chronic depression and anxiety and not having to deal with fatigue like this. Maybe it is different for everyone. I know it Sjogren's affect people differently.

I don't have a support system and like some people have posted, people really don't understand! fatigue has stole my life. I lost everything!! What I would like to know from others, is this. Does fatigue get so bad it feels like your body is going to shut down and you will die?? I don't feel that way all the time, but it gets pretty severe way to often. It scares me really. I don't really take anything at the moment because the medication they gave me did not sit well with me. Increased insomnia like never before. Couldn't sleep a wink for 4 days and thought I was going to go insane.. literally!! I did drop the dose but no change. My brain just wouldn't shut down. I did do some research on fatigue this whole time and I recently came across modafinil and I am so curious to try this. I can't handle this life with fatigue and I am desperate, as we all are!! Life sure is unfair!!

Anyhow I feel for anyone going through any illness and specifically Sjogren's because I can relate so well. I do hope we find our lives back and wish you all well…

Bill

Medication was plaquenil.

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@devonsdad2008 Yes, fatigue has been my worst symptom with Sjogrens. On December 29th, With my doctor’s advice, I did the Whole 30 diet. Before the 30 days was up, the first thing I noticed was that I had so much more energy. I’ve been feeling so much better since changing my diet. I am now on the Paleo diet, also directed by my doctor. She has helped me more than anyone. You may want to try it! I found all my information online, even a lot of good recipes.

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@devonsdad2008

I was diagnosed with Sjogren's but I also suffer from depression and anxiety/panic attacks. I suffered from depression and anxiety most of my life (47 now) and I have never experienced Fatigue like this, EVER!!! I was diagnosed with Sjogren's in 2016 and that is when the fatigue hit. So I would say Sjogren's has something to do with it one way or another. Of course the depression and anxiety are at it's highest level, so I would say Sjogren's play's apart in that also. Just my opinion, having experienced chronic depression and anxiety and not having to deal with fatigue like this. Maybe it is different for everyone. I know it Sjogren's affect people differently.

I don't have a support system and like some people have posted, people really don't understand! fatigue has stole my life. I lost everything!! What I would like to know from others, is this. Does fatigue get so bad it feels like your body is going to shut down and you will die?? I don't feel that way all the time, but it gets pretty severe way to often. It scares me really. I don't really take anything at the moment because the medication they gave me did not sit well with me. Increased insomnia like never before. Couldn't sleep a wink for 4 days and thought I was going to go insane.. literally!! I did drop the dose but no change. My brain just wouldn't shut down. I did do some research on fatigue this whole time and I recently came across modafinil and I am so curious to try this. I can't handle this life with fatigue and I am desperate, as we all are!! Life sure is unfair!!

Anyhow I feel for anyone going through any illness and specifically Sjogren's because I can relate so well. I do hope we find our lives back and wish you all well…

Bill

Medication was plaquenil.

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Hello @devonsdad2008 — I see this is your first post and would like to welcome you to Connect. Thank you @kyjeanne and @robbinr for posting helpful information – that is what so great about Connect, patients helping patients. You may also want to take a look at the following discussions:

– Undiagnosed auto immune disease: https://connect.mayoclinic.org/discussion/undiagnosed-auto-immune-disease/
– Autoimmune Diseases and Fatigue: https://connect.mayoclinic.org/discussion/autoimmune-diseases-and-fatigue/

I also found this TED Talk by TED Fellow Jennifer Brea who became progressively ill with myalgic encephalomyelitis commonly known as chronic fatigue syndrome beneficial:

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose

John

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@robbinr

Yes. I have had fatigue to the point where I figured I was dying. But I didn't. Diagnosed with Fibro over 20 years ago. You just push through. I hope someone with Sjogren's weighs in for you to compare notes with. It is another in the autoimmune bucket that is so hard to figure out. Regards,
Robbin

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Thank you Robbin for responding. I have only had Sjorgren's for a short time here and it's already wrecked my life. I can't imagine having Fibro for 20+ years. When I hear that someone has suffered that long, makes me feel sad. I'm sorry any of us has to go through this.

Thanks again Robbin, Thanks for responding!

Billy

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@devonsdad2008

I was diagnosed with Sjogren's but I also suffer from depression and anxiety/panic attacks. I suffered from depression and anxiety most of my life (47 now) and I have never experienced Fatigue like this, EVER!!! I was diagnosed with Sjogren's in 2016 and that is when the fatigue hit. So I would say Sjogren's has something to do with it one way or another. Of course the depression and anxiety are at it's highest level, so I would say Sjogren's play's apart in that also. Just my opinion, having experienced chronic depression and anxiety and not having to deal with fatigue like this. Maybe it is different for everyone. I know it Sjogren's affect people differently.

I don't have a support system and like some people have posted, people really don't understand! fatigue has stole my life. I lost everything!! What I would like to know from others, is this. Does fatigue get so bad it feels like your body is going to shut down and you will die?? I don't feel that way all the time, but it gets pretty severe way to often. It scares me really. I don't really take anything at the moment because the medication they gave me did not sit well with me. Increased insomnia like never before. Couldn't sleep a wink for 4 days and thought I was going to go insane.. literally!! I did drop the dose but no change. My brain just wouldn't shut down. I did do some research on fatigue this whole time and I recently came across modafinil and I am so curious to try this. I can't handle this life with fatigue and I am desperate, as we all are!! Life sure is unfair!!

Anyhow I feel for anyone going through any illness and specifically Sjogren's because I can relate so well. I do hope we find our lives back and wish you all well…

Bill

Medication was plaquenil.

Jump to this post

Kyjeanne, that is what I have been looking into and reading about. I have not heard of that particular diet but will absolutely look into it. The medication didn't work for me and I won't take the risks with any other med. When you have an illness like this, you have to keep looking for a way out! Thanks for the great information! I am super glad it is working for you!

Billy

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@devonsdad2008

I was diagnosed with Sjogren's but I also suffer from depression and anxiety/panic attacks. I suffered from depression and anxiety most of my life (47 now) and I have never experienced Fatigue like this, EVER!!! I was diagnosed with Sjogren's in 2016 and that is when the fatigue hit. So I would say Sjogren's has something to do with it one way or another. Of course the depression and anxiety are at it's highest level, so I would say Sjogren's play's apart in that also. Just my opinion, having experienced chronic depression and anxiety and not having to deal with fatigue like this. Maybe it is different for everyone. I know it Sjogren's affect people differently.

I don't have a support system and like some people have posted, people really don't understand! fatigue has stole my life. I lost everything!! What I would like to know from others, is this. Does fatigue get so bad it feels like your body is going to shut down and you will die?? I don't feel that way all the time, but it gets pretty severe way to often. It scares me really. I don't really take anything at the moment because the medication they gave me did not sit well with me. Increased insomnia like never before. Couldn't sleep a wink for 4 days and thought I was going to go insane.. literally!! I did drop the dose but no change. My brain just wouldn't shut down. I did do some research on fatigue this whole time and I recently came across modafinil and I am so curious to try this. I can't handle this life with fatigue and I am desperate, as we all are!! Life sure is unfair!!

Anyhow I feel for anyone going through any illness and specifically Sjogren's because I can relate so well. I do hope we find our lives back and wish you all well…

Bill

Medication was plaquenil.

Jump to this post

John thank you! I am glad I found this forum. Seems to be some very friendly and helpful people here. I was expecting a response days later. However I am sure this site is a wonderful and helpful place to visit.

Thank you for the information. I came across Ted Talk not to long ago and really liked the channel. However I did not come across CFS talk. Will definitely look that up as well as the other information you posted.

Thanks for your help!

Billy

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@devonsdad2008

I was diagnosed with Sjogren's but I also suffer from depression and anxiety/panic attacks. I suffered from depression and anxiety most of my life (47 now) and I have never experienced Fatigue like this, EVER!!! I was diagnosed with Sjogren's in 2016 and that is when the fatigue hit. So I would say Sjogren's has something to do with it one way or another. Of course the depression and anxiety are at it's highest level, so I would say Sjogren's play's apart in that also. Just my opinion, having experienced chronic depression and anxiety and not having to deal with fatigue like this. Maybe it is different for everyone. I know it Sjogren's affect people differently.

I don't have a support system and like some people have posted, people really don't understand! fatigue has stole my life. I lost everything!! What I would like to know from others, is this. Does fatigue get so bad it feels like your body is going to shut down and you will die?? I don't feel that way all the time, but it gets pretty severe way to often. It scares me really. I don't really take anything at the moment because the medication they gave me did not sit well with me. Increased insomnia like never before. Couldn't sleep a wink for 4 days and thought I was going to go insane.. literally!! I did drop the dose but no change. My brain just wouldn't shut down. I did do some research on fatigue this whole time and I recently came across modafinil and I am so curious to try this. I can't handle this life with fatigue and I am desperate, as we all are!! Life sure is unfair!!

Anyhow I feel for anyone going through any illness and specifically Sjogren's because I can relate so well. I do hope we find our lives back and wish you all well…

Bill

Medication was plaquenil.

Jump to this post

I just watched the Ted talk and it brought tears to my eyes. It is such a crime how we are treated. I also have Median Arcuate Ligament Syndrome (MALS), 3 surgeries and pain and gi issues from that, yet I am told there is nothing wrong. I don't know what is CFS, what is MALS, then I start thinking is it in my head. Some of these drs. make me feel that way. There is no way, I didn't imagine 3 surgeries, I wouldn't have been awarded social security disability,,but why can't I find someone, dr., to help me. My last hope right now is I am waiting for the cardiology dept. to call me back with an appointment date, and possibly neurology. My primary and vascular surgeon suspect POTS. The saddest part is that the GI dept. said that maybe I need to go somewhere where they specialize in my rare disease, MALS. I'm sorry but I thought that is what Mayo was. I don't want to be negative, but I feel like the rug was once again pulled out from under me. What I thought was finally going to be my answers and hope, just the total opposite.

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