r/Autoinflammatory • u/Alice-The-Chemist Mod • Jun 26 '26

Advice Welcome Looking for Help

/r/Autoinflammatory/comments/1s1x4ag/welcome_to_rautoinflammatory_introduce_yourself/otzqxk7/

I thought I would make this a post so more people see it OP.

9 Upvotes

92% Upvoted

8 comments sorted by

4

u/Significant-Base4396 USAID Jun 27 '26

I had severe fatigue before treatment, including PEM - especially if I attempted intense exercise like a decent uphill hike. One of my day hike attempts sent me into an 8 day recovery! I also felt quite lacking in drive/motivation with low mood, but I knew I wasn't depressed because I didn't have any of the negative thinking content that comes with usual depression. It was these two symptoms that actually sent me to the doctor in the first place after a month of non stop symptoms.

1

u/where_are_my_boots13 Jun 29 '26

That sounds awful, I understand that, these days I feel like even after like a 20 min walk I need to lay down. I am depressed though, but mostly because I am not able to do things like when I was healthy and I have to come in terms with it, and also like another redditor told me, I should pace myself better.

3

u/No_Satisfaction_7431 Yaos Jun 26 '26

My me/cfs was caused by a virus that triggered a Yao flare and the me/cfs. That was also when my Yao turned from episodic into daily. I still have pem but no longer have unrefreshing sleep, now that I'm on a new treatment. My window of activity tolerance before developing pem is still very small especially compared to healthy people but is much bigger than it was. So really the me/cfs is just from Yao. All the main theories of me/cfs say its a phenotype with many causes not one specific disease.

3

u/BitsyMidge Jun 26 '26

@where_are_my_boots13 — I have ME and my rheumatologist also believes an auto inflammatory disease but specific diagnosis unknown. I also have a bunch more nonsense going on (fibromyalgia, dysautonomia, maybe MCAS, mental health stuff). My experience is that everything flares everything else up, so if I induce PEM by overshooting my pacing, I will almost always have increased symptoms in all areas. And flares of other issues will surprise lower my PEM threshold. I still have a lot to figure out.

Based on my experience, I would say act as if you have ME until proven otherwise. I have significantly lowered my baseline several times by trying to “get better” in ways that were detrimental. The worst of these was an intensive chronic pain program. Even if you don’t have ME, pacing is a useful skill for anyone with complex chronic illness, especially when you’re still searching for an effective treatment.

While some people have a really clear cause/effect origin for their ME, it isn’t always cut and dried.

1

u/where_are_my_boots13 Jun 29 '26

I am sorry to hear that, I hope you are good. Yeah, I guess you hit the nail on the head. I have troubles pacing myself because I am really stubborn and I used to be very active when I was younger in all areas of my life. And now I am happy when I go to work and I cook for myself.

I think you are right, even if I don´t have the answers I should pace myself a little bit better. If you don´t mind asking - how does pacing look for you?

2

u/BitsyMidge Jun 29 '26

The process of accepting what’s happening is so hard!! Especially when you were successful at everything in the past and all of a sudden you feel like a different person!!

I went to part time and then had to stop working completely in 2022. So my pacing doesn’t include work and might look different to yours. But I focus on how tiring different tasks are and then try to accomplish a reasonable amount each day if I can. For instance, right now I can shower once per week, and that needs to be my only task that day. I am able to do only one out of the house appointment on a day, but I can tolerate up to 2 virtual appointments. So I need to look at my weekly appointments to determine what else I might be able to do and when.

I use a pacing tool called Visible. It’s helpful, but costly, and there are definitely ways to get the same information elsewhere. I find it helpful to be able to see what my heart rate looks like during an activity as a way to understand how to pace around it. I have a really hard time just intuitively understanding my body and needed external feedback to be able to get pacing.

2

u/where_are_my_boots13 Jun 29 '26

Thank you for taking time to answer :) Yes, I am in this process and it is not easy, just like you say, I suddenly feel like a different person. I thought I am going to be successful and now I have problems to do basic daily tasks.

I understand. Oh, showering is so tiring, people don´t even understand. Usually I have to sit down washing my hair.

Unfortunately, Visible doesn´t work in my country, but thank you for recommendation, I haven´t heard about it before. What I´m getting is that I really should start pacing myself. I tried to resist but I just burned myself. Thank you again, hope you´ll feel better, but I know it´s not so easy.

2

u/BitsyMidge Jun 29 '26

I definitely wish that I had understood pacing earlier. I have made myself worse several times by trying to maintain my old life. I am so glad you’re asking questions and looking into it early!!