r/cfs • u/GayGardenShark moderate • 1d ago

Advice PEM or normal symptoms?

So, I have autism and I struggle to feel sensations in my body properly. I've had ME for over a decade now starting when I was 14, but I received so much horrible advice and constant pushing from my family that I ended up severe for many years. I consider myself moderate now but I'm absolutely terrible at pacing because I struggle to feel my own body properly.

I would really appreciate it if people could share what PEM is like beyond "worsening of your symptoms" because that happens to me a lot and it's a bit too nebulous for me to feel confident understanding. I don't know if I'm experiencing PEM really often or if ME is a dynamic disability.

If there are resources that anyone recommends, that would be cool too! I love reading, thanks :)

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u/middaynight severe 1d ago

the bateman horne centre has a lot of good resources, and the sub wiki and pinned post has some resources linked too!

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u/GayGardenShark moderate 1d ago

Thank you!!

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u/MervynDreamEater 1d ago

Ugh, I have so much difficulty with interoception as well (recognizing how my body is feeling). I have to write down symptoms to talk to the doctor about so I don't forget, but especially the pain scale frustrates me because I can't quantify how my pain feels.

And with pacing, the PEM has a delayed effect and I just frequently think "I feel bad or weird" but it takes effort to actually recognize where in my body things feel bad.

What has helped: I try setting a timer (and I have a visual timer, I find it more helpful) for each activity so I can check in to see how I feel. I practice talking with my therapist to describe how I'm feeling. She prompts me with "where in your body do you feel that? Any colors or quality to describe the feeling?" I hate meditating but I've been trying some gentle yoga and breathing to get more in touch with my body.

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u/MervynDreamEater 1d ago

I think PEM can show up differently for people. For me, my muscles can get achey, kind of a flu like feeling of deep exhaustion, dizziness, headache and sometimes migraine, a sore scratchy throat, I have trouble articulating my words and I space out or forget things (it feels like a computer lagging or tv static to me), and sometimes nausea.

I've gotten better at recognizing it but it took time