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.

lioness | @lioness | Mar 10, 2018
In reply to @oregongirl "John bishop, I wish I could find the answer to fatigue. I have RA and a..." + (show)
@oregongirl

John bishop, I wish I could find the answer to fatigue. I have RA and a heart condition. I am sure my fatigue is encouraged by heart meds
But, I am unable to even stand for about 4 hrs after I get up. I also take a nap mid day. Maybe some of mine has been how my RA has kept me from enjoying my retirement yrs. We worked so hard all of us, got our pay and never asked anyone for help. I M moving thru my life and it seems my tiredness is on schedule every morning and underlying at all times.

Jump to this post

I just signed up for 21day pain protocol website is http://www.21 DayPainFix.com you have to sign up for it it will be on 3-15@1 p.m.est. If interested to look at it

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2018
In reply to @oregongirl "John bishop, I wish I could find the answer to fatigue. I have RA and a..." + (show)
@oregongirl

John bishop, I wish I could find the answer to fatigue. I have RA and a heart condition. I am sure my fatigue is encouraged by heart meds
But, I am unable to even stand for about 4 hrs after I get up. I also take a nap mid day. Maybe some of mine has been how my RA has kept me from enjoying my retirement yrs. We worked so hard all of us, got our pay and never asked anyone for help. I M moving thru my life and it seems my tiredness is on schedule every morning and underlying at all times.

Jump to this post

Yup, you just have to keep thinking -- left foot, right foot, left foot, right foot...and one day a time. The fatigue is a real problem. I don't think I have chronic fatigue but I too am tired most of the day. Growing up I could never understand why my mom used to be in so much pain all the time. I had no concept of rheumatoid arthritis and the pain it brings to those who have it. I've learned to rest when I can and have fun when I can but I try to find a balance by not overdoing it. I do take brewer's yeast for energy and it seems to help a little but It doesn't seem to be "the" answer for more energy.

-- https://www.healthline.com/health/brewers-yeast

John

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2018
In reply to @devonsdad2008 "I was diagnosed with Sjogren's but I also suffer from depression and anxiety/panic attacks. I suffered..." + (show)
@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

Jill (@jmmb), thank you for sharing your story. I'm hoping when you meet with the surgeon in Texas he will be able to shed some light on the problem and get some answers and a treatment for you. If possible, it would be great if you can give us an update after you meet with him again.

Keep bugging them and don't take no for answer.
John

REPLY
jmmb | @jmmb | Mar 10, 2018
In reply to @devonsdad2008 "I was diagnosed with Sjogren's but I also suffer from depression and anxiety/panic attacks. I suffered..." + (show)
@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

Thank you John, I will. Sometimes just don't know what to focus on first, CFS, MALS....ugh, but try to stay positive. People like you help!Thank you again.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Mar 10, 2018
In reply to @oregongirl "John bishop, I wish I could find the answer to fatigue. I have RA and a..." + (show)
@oregongirl

John bishop, I wish I could find the answer to fatigue. I have RA and a heart condition. I am sure my fatigue is encouraged by heart meds
But, I am unable to even stand for about 4 hrs after I get up. I also take a nap mid day. Maybe some of mine has been how my RA has kept me from enjoying my retirement yrs. We worked so hard all of us, got our pay and never asked anyone for help. I M moving thru my life and it seems my tiredness is on schedule every morning and underlying at all times.

Jump to this post

Hi @lioness I would be cautious with the miracle cures. If it looks too good to be true it usually is. There are a lot of us hurting and there are a lot of them out there that know we are hurting and are willing to take whatever money we have. OK to listen and learn but be cautious when they start asking for money.

John

REPLY
lioness | @lioness | Mar 10, 2018
In reply to @oregongirl "John bishop, I wish I could find the answer to fatigue. I have RA and a..." + (show)
@oregongirl

John bishop, I wish I could find the answer to fatigue. I have RA and a heart condition. I am sure my fatigue is encouraged by heart meds
But, I am unable to even stand for about 4 hrs after I get up. I also take a nap mid day. Maybe some of mine has been how my RA has kept me from enjoying my retirement yrs. We worked so hard all of us, got our pay and never asked anyone for help. I M moving thru my life and it seems my tiredness is on schedule every morning and underlying at all times.

Jump to this post

Thanks John been down that road in past no I listen but never buy sometimes they have good info and sometimes money talks

REPLY
lioness | @lioness | Mar 10, 2018

Hi John I'm having problems replying the reply box that is the shots one won't reply for me ,hope you get this one.Thanks John but I never buy Been down that road Sometimes there,s good info.but money talks also .I just like to acquire information ,it might help it may not.

REPLY
3 replies
lioness | @lioness | Mar 10, 2018

Well I see it did come through o.k.The health science institute Dr,Joshua Levitt is the person presenting this discussion on the 21 day pain free protocol So be should be interesting I know there,'ll be a book for sale but I'm not buying.

REPLY
5 replies
Texas Freedom | @oregongirl | Mar 10, 2018
In reply to @oregongirl "John bishop, I wish I could find the answer to fatigue. I have RA and a..." + (show)
@oregongirl

John bishop, I wish I could find the answer to fatigue. I have RA and a heart condition. I am sure my fatigue is encouraged by heart meds
But, I am unable to even stand for about 4 hrs after I get up. I also take a nap mid day. Maybe some of mine has been how my RA has kept me from enjoying my retirement yrs. We worked so hard all of us, got our pay and never asked anyone for help. I M moving thru my life and it seems my tiredness is on schedule every morning and underlying at all times.

Jump to this post

I admit my depression is setting in. I can't get relief from pain. I am tired all the time. I hate this disease. I was supposed to go somewhere. No way did I make it and I really tried.

REPLY
lioness | @lioness | Mar 10, 2018
In reply to @oregongirl "John bishop, I wish I could find the answer to fatigue. I have RA and a..." + (show)
@oregongirl

John bishop, I wish I could find the answer to fatigue. I have RA and a heart condition. I am sure my fatigue is encouraged by heart meds
But, I am unable to even stand for about 4 hrs after I get up. I also take a nap mid day. Maybe some of mine has been how my RA has kept me from enjoying my retirement yrs. We worked so hard all of us, got our pay and never asked anyone for help. I M moving thru my life and it seems my tiredness is on schedule every morning and underlying at all times.

Jump to this post

So sorry to hear this Are you on anything for depression?

REPLY
View MoreView Less
Please sign in or register to post a reply.