Fatigue , and exercise.

Yes, and I have been warned with ANCA GPA Vasculitis to do, but not overdo, as it could cause another major flare with more organ damage. So, moderation is the key for me.

Understand. I was a walker and bike rider until I was 64. Then I began to feel bad, ear and sinus issues for which I had surgery last July. Then lung issues and next kidney issues kicked in. Finally diagnosed with ANCA GPA Vasculitis in November, then had a major flare with ICU stay. Not sure I will ever be "me" again, but very thankful I have finally begun to regain some strength. Praying for your renewed strength. Blessings.

I'm so sorry to hear how bad you've got it. It's a real curse. Best of luck.

Yes my fatigue in the afternoon is worse after moving around and doing some chores. In the morning I’m exhausted from Myasthenia Gravis as my med wore off overnight. I take it and I’m relatively ok until about an hour before my next dose. I complained to my dr and we increased the amount of dosages and now I’m not as tired in between. In the afternoon I’m still fatigued even after I take a dose so I know it’s not the MG.
I’m no longer sleeping well at night and I have MCTD like my dad. When I can I exercise and feel good until the 2nd day after, at which I’m really fatigued. So of course I don’t exercise as much as I like or should. My dad and me were athletic so it’s hard to understand and tolerate

You sound like you're my identical twin. Best wishes for some remission. It's so strange: my immune system was my friend for 71 years. Oh well...man plans and the universe laughs.

@dkelban I see this post has stayed around for at least a year. I have felt like I'm a different species with fatigue in the afternoon so profound I sleep for an hour. This is the most disabling part of my illness and it began when I was 31, I am now 67. Once we drove to the Grand Canyon, well I didn't do any driving. ,But we got there and everyone was at the edge looking at the beauty. I was taking a nap in the back seat. Felt like hell. There is no way I could exercise after noon. I make all my appointments and enjoy a walk in the morning. I'm interested to see all of the differences in fatigue/exercise levels. I resigned myself to resting/sleeping in the afternoon. In time I don't even wish it could be different. I became so used to it and know there was only disappointment whenever I have tried to be active between 2p-4p. I live with RA, Sjogrens, Hashimoto's, UCTD and now in my 60's have psoriatic changes, I guess there are no limit to how many autoimmune illnesses one can have! I really have seen that in these forums.

It's a real pain in the ass. I'm learning more and more what I can and can't do. Missed a friend's party this week...SHIT!! I'm so much more sedentary but I don't care: whatever makes me feel better I'M DOING!! I exercised hard all my life and this is my reward lol. What helps more is my medication regimen: plaquenil, and small to moderate doses of tramadol (a weaker and safer opiate) together with a small dose of Klonopin. They warn you about this combination but my doctors know I don't abuse them, the same moderate dose has not lost effectiveness, I don't drink at all or use any other drugs, and I see a pain management specialist who knows me and has no problem with what I'm doing, or else I wouldn't do it. Strangely, this combination helps, not increases, my fatigue and lightheadedness.
I hope all this helps, but remember all meds should be under medical supervision, With the doctor Knowing about all your meds and other medical conditions. Best wishes...

@mclelland1958 I hear you on this one! I swim, walk, do stretching, and row. I once could walk for miles, row to HIT videos, tread water for hours. Now, I can walk about 1.5 miles on a good day, tread for 40 minutes, and row for 20 - no more HIT. These are all good day times. Pacing is difficult. There is no steadfast time. I really have to listen to my body and recognize every day is different. Some days, walking to the kitchen is impossible. It has been a difficult road trying to embrace my limitations.

Yes! Afternoon fatigue is really debilitating. I often have to nap. There are days, such as last week, that I napped from 4-6:30. On these days, I also require an early bedtime and often sleep for 9-10 hours. My energy is never what it once was. I have secondary sjogrens and connective tissue disease. Possibly fibromyalgia as well.

Just an idea - I have post exercise malaise and tremendous amounts of painful inflammation from Long COVID which is mostly relieved from Low Dose Naltrexone. I looked to see if it has been used for your disease and found this:

"Low-dose naltrexone (LDN) is being explored as a potential treatment for mixed connective tissue disease (MCTD), particularly for managing symptoms such as pain and autoimmune activity.
Some individuals with MCTD have reported significant improvements in their quality of life after starting LDN, including reduced inflammation, regained physical function, and the ability to resume daily activities."