Connect
Autoimmune Diseases and Fatigue
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Autoimmune Diseases Support Group.
Connect
Sorry I thought imuran was a biologic
@lorena1egas -
It seems that chronic fatigue that comes with chronic illness is very difficult to treat. It’s hard to know if the illness is the cause- autoimmune illnesses definitely are known to cause fatigue- or the treatment.
Even when my autoimmune illness is not active, I’m still tired- just not the extreme exhaustion. I function better and can be somewhat physically active.
I try to read up on chronic fatigue hoping for an easy solution. It doesn’t exist.
Now there is long Covid too- totally different and much still unknown.
-
Like -
Helpful -
Hug
3 ReactionsSo glad you are checking into related problems. Good sleep is an essential!
The best advise I can give (from my 49 years of fighting this) is break down every activity into small bits...called Pacing. It is amazing what you can accomplish when you do things over time - hours or days.
Be kind to yourself!
Get rid of people who refuse to accommodate to your level of participation. Or refuse to accept your requirements! ..supportive folk are priceless! Cherish them!
-
Like -
Helpful -
Hug
8 ReactionsAPS/Autoimmune thyroid disease diagnosis!
Struggling with pain fatigue and weight issues !
Glad to finally have a name for my struggles
-
Like -
Helpful -
Hug
3 ReactionsMy rheumatologist believes I have both cfs & long covid because other viruses have given me similar symptoms before Covid was known. 2011 & early 2019. I got Covid in Nov. of ‘21 & still have symptoms. For me fatigue is the worst. I just want to sleep. I fight with myself all the time. “You’re just lazy.” It’s hard to understand such profound exhaustion. I feel like everyone just thinks I’m lazy and I’m not trying hard enough. Maybe they do, maybe they don’t, but my head tells me that. I hate doubting myself because it just makes me feel worse. I feel like a failure.
-
Like -
Helpful -
Hug
3 Reactions@joansmurphy
You are NOT lazy. Don’t listen to negative people.
When I was at my worst there were days when I was on my bed, unable to do anything, actually panting.
The family didn’t really understand. The doctors didn’t either.
Most doctors don’t understand the extreme fatigue and exhaustion associated with autoimmune illnesses.
Did you have any treatments for cfs and long Covid?
-
Like -
Helpful -
Hug
6 ReactionsI am wondering if anyone has been "upping their antibodies" for autoimmune conditions? I have Churg Strauss and interesting enough it my ENT that suggested having my antibodies level checked and if, as he suspected was low, I should consider this treatment.
We need much more research on this topic before we will ever get better treatment. I don't think there is an easy solution for it. I asked my Mayo dr and he said there is not enough research (as we know) but that that it could be brain inflamation.
So WHY don't they research it more?
I've been diagnosed with both autoimmune fatigue and Chronic Fatigue.
But there is not much help on hand for this from the professionals and thats discouraging.
As we all know it can be difficult to deal with and is NOT in our heads!
-
Like -
Helpful -
Hug
2 ReactionsThere are some good support and information websites on Chronic Fatigue.
And with the long COVID people getting CF or something similar, as you've stated there is now a lot more research but little I can find on autoimmune fatigue that is actual research.
-
Like -
Helpful -
Hug
3 ReactionsHashimotos? I have that too.
-
Like -
Helpful -
Hug
1 Reaction