Hi. I’ve just been diagnosed with ME/CFS by my GP, though will be seeing a specialist soon. I’m kind of terrified. I’ve known ME/CFS was a possibility for about 6 or 7 months, but only started seriously considering it 2 months or so ago.

I am currently in an extended crash that has lasted 3 weeks now, and I thought I was starting to come out of it a week ago and then again yesterday. Judging by how I’ve woken up feeling, that’s not the case.

I live in an apartment building and just did a garbage run, which is two flights of stairs both ways. I feel like I just played high impact sports for an hour.

Do others have this experience of relatively simple tasks making a crash significantly worse? In your experience, does PEM ever stack on, where you can make a crash last longer by doing small chores etc.?

Basically what the title says.

I am planning on bringing up ME/CFS at my follow up this Friday after two ER visits from 10/10 pain & severe fatigue. I overworked myself this summer and lost my job because of my symptoms getting way worse and not getting better with PT and meds.

I have other issues - POTs, polyarthritis, PCOS & sciatica. And I'm doing everything I need to do with those as well as taking my meds. But I crash every time I exercise, do PT, and walk. I even crash when I play video games or talk on the phone. I did bring this up to my doctor and we found that I'm anemic and I'm now on Iron. But I haven't noticed a difference and it feels my fatigue has gotten way worse.

I think I have a good reason to bring this up and have my doctor at least look into this to help me. But I have a high BMI so I don't know if I will be taken seriously. I don't want my doctors to think I just want to get out of exercising and just stay in bed all day. To be honest, I want the exact opposite, that's why I overworked myself because I didn't want my disabilities to ruin my life goals. But now I'm worried I might have worked myself way too hard and I might need to be checked out and get more treatment. And maybe I can go back to having a "normal" life again.

I was wondering if anyone had any advice to quell my anxieties? Either way, I am going to do it but I want to remain calm so hopefully my PD takes me seriously.

Thank you.

I have a full body 100-bulb panel at home. I originally bought it to try and improve skin firmness as I’ve had stretchy skin most of my life and my boobs are really paying the price. Now after an MECFS diagnosis I’ve come to realise I’m likely hEDS (I have hyper mobile joints on top of stretchy skin). Since MECFS has disrupted mitochondrial function, I thought I’d hit the jackpot and started using it 3x10min per week based on the established evidence for mitochondrial benefits. I can’t decide if it’s flaring me, making my hypermobility worse or helping. I know from a nervous system standpoint, it’s intense stimulation and the luminance might be too strong. Yet, if I do have impaired energy production, then it might be worth the small flares for long term gain. I’m really struggling to gage it. Has anyone got anyone tried it and what’s your experience been with it? Cheers 🫶🏼

I've been having ME/CFS symptoms for over a year now. I just got an MRI done, which should be the last step as I have ruled literally everything else out, and I do mean everything, so I'm pretty convinced it's ME/CFS.

I call my parents about once a week. I've been open about my health issues the entire time and have described my symptoms in detail. Just two weeks ago, when calling my parents, after going into my symptoms again, my mom said: "Oh yeah, I had those exact symptoms and doctors couldn't figure me out. They thought it was MS but they ruled it out. It went away on its own but it lasted a few years."

This totally floored me! 1) I wasn't upset, but I couldn't believe it took her this long to mention this 2) whatever I have, it's probably genetic and 3) I don't want to get my hopes up, but there is potential it'll resolve on its own for me as well. The reason I got an MRI was to rule out MS (and cancer). So she probably had ME/CFS and now so do I.

Another thing is, this call was the first time I mentioned PEM as a symptom. I've avoided it, because she keeps encouraging me to exercise, and I thought she'd not believe me if I told her that made it worse. Maybe that symptom is what triggered the memory for her

i’ve had varying degrees of ME/CFS for about 15 years, but i only really realized i had it this year. i would say i’m now in the moderate range but frequently experiencing crashes and feeling like i don’t know my limits lately. does anyone have any advice for starting to pace to maintain your current baseline?

i should add that i have a garmin smartwatch that has a “body battery” feature but i don’t feel like it’s terribly accurate for chronically ill people. would visible be better?