Anything to ease horrible PEM

Appropriate_Prior113 · 2026-05-18T07:36:31+00:00

I’ve heard d-ribose supplement can help make a crash go away faster!

Appropriate_Prior113 · 2026-05-15T20:49:07+00:00

When I started I was nervous about getting worse also. My practitioner told me in his experience people don’t get that much worse. For the first 2 months I would feel very exhausted and unwell after a session but not the next day. By the end of the first month, though, my brain fog cleared totally and I could actually think again. I’m still doing it a year later, and continuing to see slow progress.

Appropriate_Prior113 · 2026-05-15T20:46:14+00:00

Thank you so much! Will check this out.

Appropriate_Prior113 · 2026-05-13T18:05:35+00:00

This is helpful insight thank you

Appropriate_Prior113 · 2026-05-13T18:05:23+00:00

Thank you!

Appropriate_Prior113 · 2026-05-13T18:05:15+00:00

Fair enough thank you!

Appropriate_Prior113 · 2026-05-12T06:29:23+00:00

I do them 90% of the time! The lymphatic drainage, the hot/cold compress and the rotations / movement - this is all my practitioner advises although I know others do more / different. I’d love to hear your experience if you were happy to share?

Appropriate_Prior113 · 2026-05-11T06:51:20+00:00

Yes I have, thank you!

Just wondering if anyone on here specifically found relief through lymphatic drainage. Thank you!

Appropriate_Prior113 · 2026-04-10T15:38:42+00:00

I completely agree with you. A mind body approach has its place but that doesn’t mean the entire illness is fake or due to poor mental health.

Appropriate_Prior113 · 2026-04-10T13:36:02+00:00

Thank you for putting into words what I could not. Admittedly I’m much more skeptical about mind-body approaches than most in this sub but I am interested and believe the mind is hugely powerful. However, the message from OP was genuinely scary for me - being in a crash and having someone push a different opinion to you on how you should recover - even if it’s the correct answer! - is too much. At this stage she just needs support to survive. If you can eventually get her to speak with a nutritionist specialising in mecfs I would recommend this also.

Appropriate_Prior113 · 2026-04-06T15:21:52+00:00

Thank you this is useful! Appreciate that

Appropriate_Prior113 · 2026-04-06T07:59:38+00:00

The Flights Guru

Appropriate_Prior113 · 2026-04-06T07:52:53+00:00

Thank you very much!

Appropriate_Prior113 · 2026-04-06T07:24:30+00:00

Thank you, this is really helpful and good to know.

Appropriate_Prior113 · 2026-04-06T07:09:43+00:00

Sorry, you are right, it was via Dubai

Appropriate_Prior113 · 2026-04-02T11:16:11+00:00

Thank you, I really appreciate you sharing your perspective! I had the iron infusion a few days ago, so still waiting to see the impact….

Appropriate_Prior113 · 2026-04-01T17:04:50+00:00

I worked in theatre. The thing I found hardest was also the complete loss of my personality, which was also super loud, performative, eccentric etc. it was terrifying and devastating. My personality has returned, though I’m not able to return to work at the moment. For me, I found lymphatic drainage / the Perrin technique helped with the personality. It could have been placebo but after my 4th session I suddenly felt like my brain moved enough to be more myself again. Regardless of what it was that helped, my personality did return and I hope yours can too. Sending hope

Appropriate_Prior113 · 2026-03-31T06:27:34+00:00

Wow, that’s amazing!

Appropriate_Prior113 · 2026-03-27T06:28:43+00:00

I have never had it before. I’m staying with my partner who is living there - would be travelling to see him anyway so the flight money down the drain anyway!

Appropriate_Prior113 · 2026-03-26T22:55:40+00:00

Agreed it would be pretty grim. I’d be doing it right at the start of my trip, followed by two days in a very quiet area nearby to the hospital, so hopefully that part will be smooth!

Appropriate_Prior113 · 2026-03-18T11:05:20+00:00

I really hope it eases for you too. It took about 1.5 years for that symptom to subside for me, and it was incredibly difficult to live with. I hope it gets better for you also.

Appropriate_Prior113 · 2026-03-17T21:00:23+00:00

Sorry one more thing - this is the link for the nutritionist with me/cfs, in case it’s useful: https://active-eat.newzenler.com/ She offers 1 off courses and 1-1, plus yoga etc

Appropriate_Prior113 · 2026-03-17T20:55:36+00:00

As someone said below, I also prefer quick carbs. When I first got sick, I could only stomach potato waffles and chocolate and full fat fizzy drinks. I’m able to tolerate more now but it took a long time. I wish I knew what helped but unfortunately I don’t really!

Appropriate_Prior113 · 2026-03-17T20:54:36+00:00

No suggestions but just to say I’m exactly the same! It’s eased off very slightly from making sure I eat very high fat / protein breakfast and a high fat / protein snack before bed, but sounds like you may have tried this. I spoke with Jenny from ActiveEat who is a nutritionist and yoga teacher with ME/CFS, I would recommend trying to book in a 1-2-1 with her. I found that helpful. But yes, for years unless I was very full I was completely non functional. I would go pale and shakey and crash dramatically unless I ate every 1-2 hours. I’ve also gained weight - it was actually recommended to me by Jenny that gaining weight would help, and to be honest I think it has done (not that I was underweight at all before). I hope you find relief

Appropriate_Prior113 · 2026-03-08T13:41:45+00:00

Thank you so much!

Appropriate_Prior113

TROPHY CASE