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For many years, and especially when I have PEM/ crash, I've found myself lying in bed, and breathing seems to take too much energy. A better way of describing it would be that if I don't wait from 5-10 seconds after a slow exhale, I get a buildup of tightness in my chest and can actually feel...

I think I still don't understand the difference between PEM and an ME flare in my own body.

Yes, so true! I was thinking yesterday as I was failing to nap (and for me, not getting that afternoon nap has a snowballing effect in terms of my insomnia and other symptoms) about how it has been probably a bad thing that I have gotten prescribed so many medications to help me sleep...

Exactly! And I think this must be the article I tried to refer to in my just-now post on the old Dan Neuffer book, the paper my MIL read that was mentioned in a Health Rising newsletter.

Honestly, I'm not sure I've ever been out of PEM for at least the last 5 years, maybe more like 10. What I feel on days when I think I can sit upright without it immediately being too much is that, after a while, my chest gets tight and I also get the sensation in my chest I described above. I...

For me, the chest thing is as I described above, not a pressure but a feeling like all my energy is draining out of my chest and even sitting upright is hard. I got a bad spell of tachycardia back when I was first year at university and pushed myself too hard during the first term and my body...

This is very helpful. I can usually tell when I've really overstepped my exertion limit. (I get something I've heard no other pwME mention, which is a sensation centered in my left chest that feels like I'm not getting enough oxygen. Very hard to describe, but the closest thing it comes to is my...

What kind of heart symptoms do you have? For me, I regularly get skipped beats and brief episodes of atrial tachycardia, but when I'm really bad, those episodes last longer. Thankfully not a-fib at this point.

Thanks for this, Alex. Very helpful.

Thank you, Alex. I never got as bad cognitively as you have, but I am not learning pacing very well (partly b/c dealing with all my comorbidities requires mangement, medical appointments, etc). Yes, I would say the bigger the crash, the worse the sleep. But also, the worse my sleep, the worse I...

Would like to know more about this. I've called every feeling of having crashed PEM, whether due to exercise (which I've not been able to do for a year and a half) to riding in a car (even a 15 mn car ride w/someone else driving now makes me crash) to screen time. And so I've felt like I've...

This is very interesting, Alex. I have TONS of experience (positive) with CBT for very different issues (treatment for body dysmorphia/fear of gaining weight with anorexia, help with catastrophizing thoughts with mild depression), and since my insomnia is so bad--and is perhaps the issue that...

Thank you to all of you. The cannabis thing is interesting. I've had lots of people suggested for various ailments I have, but they weren't knowledgeable people so I kind of felt like it was snake oil du jour. But I definitely trust you all. The tricky thing will be figuring out if any of it is...

First, huge apologies for rarely coming on this site (which I recommend to everyone wanting/needing to learn about ME), and then coming on just to ask questions. My ME (Dxed Dec 27, 2022 but probably dating back to 1994) has been getting progressively worse. I'm now mostly housebound and should...

Thanks for the clarification, Peter. I was guessing a nutritionalist in the UK is something like a "functional medicine physician" here -- often going well outside the bounds of what scientific research has shown to be viable treatment. I've noticed that many people, especially where I live, are...

Thanks, everyone. My GI was very helpful yesterday. It seems that if one isn't experiencing symptoms as coinciding with bowel habit changes (either diarrhea or constipation), those symptoms are not likely IBS-caused. I am pretty sure that, after some medication reactions in July, my habits are...

Thank you, Peter. This is very helpful. I feel like what you describe as your experience is very similar to mine. I, too, have things I need to avoid in my diet and have since before I got ME (I think)--I also have a sweet tooth, and often I end up eating more sugar when I am having gut issues...

Luna, did your IBS symptoms coincide with the onset of ME, or a worsening of other ME symptoms? Oh wait--just reread your message and saw that you've been Dxed with microscopic colitis--I'm so sorry. So maybe not at all related to your ME. I've had IBS issues since age 14 (now 55) after gastric...

I'm glad you had a good night's sleep, and I hope that the relatively small change in diet helps. I find that so many of these elimination diets aren't as scientifically sound as they're made out to be because there are far too many variables we may not know about re: the gut, and if you...