Post-Exertional Malaise & Pacing

Amy Mooney, OTR/MS, and Clayton Powers, DPT, talk about post-exertional malaise (PEM)/post-exertional symptom exacerbation (PESE), orthostatic intolerance and the importance of pacing to decrease the frequency and severity of PEM episodes.

TIME STAMPS
00:00 Introduction
00:52 What Post-Exertional Malaise (PEM) Is and Is Not
02:19 Orthostatic Intolerance Management
03:34 Pacing Techniques for PEM
07:13 Summary

Note to community members: We advise viewers to always speak with their medical care team before making any adjustments or changes to their current care regimen.

This video is made possible with the support of the Open Medicine Foundation and donors like you.

[GalaxiiGrl]

Thank you so much for this informative video. The only things I would add are the fact that adrenaline can mask immediate PEM symptoms, so patients can't necessarily rely on how they're feeling in the moment to properly pace; and that repeated episodes of PEM can lead to a permanent worsening of the patient's baseline of functioning.

[tstarrett]

I would on stand to walk to my bathroom and my pulse rate would be 136. If I had a doctor appointment on the 10th, I had to shower on the 9th. Just hygiene attempts could put me down for 24 hours. Going to the appointment put me down for 2-3 days. I had to start really slow. Thank you for being on YouTube and helping people like me who cannot afford physical therapy. It means a lot. ❤

[burgermind]

This is needed to oppose the general ignorance of the existence of PEM among the medical establishment overall

[Zkbbkzzz]

Physicians need to be educated about PEM/ ME.

[traveltheworld]

Your videos are amazing! Thank you for keeping them short and to the point.

[seaweedeater]

Recognising immediate symptoms can be even more difficult when affected by Orthostatic Intolerance as well. When the brain is hypo perfused (when upright) one is losing cognitive awareness. I find I’ve already overdone it before I’ve recognised symptoms as my brain is not connecting the dots properly.

[barbh]

The 30% cell phone is a good analogy. I understand spoon theory, but it's a little hard for people to understand.

[sabs]

Wow that should been teached in every country in university

[mashr]

My warning sign to lay down is the heat sensation up my spine that increases as the base of my head. I’m in the severe stage. However, I finally think I figured out pacing. So hopefully now I won’t lose anymore battery life. I’m at a 30% battery and a 1.0 functional capacity.

[seaweedeater]

It’s, unfortunately, a bit misleading when you say pacing = “minimal consequences”. In actuality, pacing equals a lessening of consequences, not “minimal consequences”. ‘Minimal consequences’ can only happen if you have very mild PEM/PESE.

[GentlecolonCare]

I’m in your area, I have ME/CFS for 35 years, I desperately need help. My doctor is not interested in learning about it. how can I find a doctor that has been trained? Thank you so much.

[MECFSDiagnosticBiomarkers]

PEM is the cardinal symptom of ME/CFS and Dr. Powers should have stated that clearly in his explanation of PEM.

[Spikypotato.]

❤Thank you for a great video. I still struggle with pacing, finding my baseline. May I ask your opinion on something, a therapy a friend recommended to me, it is called bemer therapy? Have you had ME patients try that and how did they react…? Thank you❤

[Zkbbkzzz]

Patients in America are not getting help either.

[seaweedeater]

A chiropractic neurologist can help get to the bottom of and repair the damage/dysfunction that’s causing the OI. Compression socks, salt and the rest of the usual advice barely help at all, at least for me. It’s just a ‘sticking plaster’. These kind of docs exist in America but not in many other countries, unfortunately.

[afterthoughts]

What a joke! 😡 Yet another doctor basically telling us, "Play dead! That'll do it!" 🙄 How about we find the roots issues and treat that instead of band-aiding the issue? I've been dealing with this for 28 years and I'll tell you what happens.. A body at rest stays at rest. When you pace you find yourself pacing more and more, when some of you already can't even get out of bed. Over time it lowers and lowers your threshold for activity, you lose muscle, and your body deconditions on top of this.

I wouldn't be able to survive off pennies of US disability so I have to be accountable for work as the sole support for my household. They don't let me trickle through my work day and take naps every 5 minutes, and caring for my kid doesn't magically pause. Sometimes life doesn't give us the option to pace!

We need to identify root cause for each person for proper treatment. We need better insurance covered, in depth workups.

If reading an hour leads to cognitive issues swap to doing several harder brain solving puzzle games throughout the day at mid length intivals. If biking hurts, swap to a trike with proper hydration and snack breaks. When yall speak of pacing, you speak of it in the form of just doing less rather than really altering each method. Baby steping through life is usually not practical for most.

I think the conversation should be more towards quality over quantity.. ways to modify the must do activity VS mainly lower or eliminate. You don't maintain muscle from stagnation, you atrophy like old folks put in nursing home beds. We are currently delt a double edge sword yall seem to be glossing over there.

The shower chair idea was the only decent suggestion (which I already use), however even showering in a chair can be exhausting! The better advice would be get a shower chair, a duel shower head with a seprate handheld sprayer that mounts on the shower wall, lower the water temp not to overheat and stay cooler, to keep blood from pooling elevate legs now and then when able, wash your body in a separate shower then washing your hair *if you can* to reduce length of shower time, lie or sit and relax a few moments before dressing because dressing is exhausting (robes help), towel dry or sit to dry hair, shorter hair is less to manage and reduces dry or styling time, dry shampoo your hair halfway through the same day you wash it or before sleep, use a silk bonet for hair during sleep (it will reduce tangles to fight and the dry shampoo will soak up oil between washes VS trying to fight it once it's already oily), etc.

If you're going to give advice, don't half-** it.

[sarahc]

So unhelpful. We are people not “individuals” in your spreadsheet. The “management “ of symptoms presented here offers no ideas for recovery.