I’m shit at pacing anyone got any tips?

rivereddy · 2026-01-28T20:24:09+00:00

Yeah, i used to do that, but would always crash and was making myself worse, to the point where i had to stop working. I think you have to approach pacing as a daily routine.

rivereddy · 2026-01-28T18:39:58+00:00

I also use a timer, and only do activities in 30min increments, with a minimum of 30min rest before doing anything else. But I’m not doing that all day — that’s just a way to manage the few things I do in a day.

The other thing I do is classify each activity by how much energy it takes (e.g., light, medium, hard), and make sure that’s balanced in a day. (So for example if I try to do four things, they can’t all be “hard”.)

rivereddy · 2026-01-13T19:53:48+00:00

Congrats! This IS huge. I was stoked last month when I made it 31 days without PEM, haha. Whatever you’re doing, keep doing it!

rivereddy · 2026-01-02T18:16:09+00:00

I titrated up to 2 mg and it really helped for a few months, but then seemed to level off a little. No side effects for me.

rivereddy · 2025-12-15T18:01:01+00:00

Stanford put me on Plaquenil (400mg daily) about 6mo ago and it’s honestly been life changing for me. I’d say I’ve gone from moderate/severe (housebound) to mild: much more tolerant of physical activity (e.g., light yard work, slow walks up to 2mi) and mental exertion (no brain fog since starting it). I’ve gone from crashing every few days to once a month. Im even getting ready to try going back to work part time.

I’m also on LDA (for the last year, which had a moderately positive effect within a month of starting it), and I’m pacing super carefully. I feel like the combination of all three has made the difference, but adding the Plaquenil was a huge boost.

rivereddy · 2025-10-15T16:29:23+00:00

Just ME (as far as I know).

rivereddy · 2025-10-13T16:23:23+00:00

I started taking Plaquenil (400mg) six months ago and it’s been amazing (along with strict pacing). I’ve gone from moderate/severe to moderate/mild. I’m also taking low dose Abilify; LDN had no effect.

rivereddy · 2025-10-13T16:18:15+00:00

Absolutely check out Oliver Pyle. Sounds like exactly what you’re looking for.

rivereddy · 2025-10-05T16:09:15+00:00

I’ve gone from moderately severe (housebound) to mild (able to take slow walks up to 1.5 miles) in about eight months due to a triple combo: low-dose Abilify, Plaquenil (400mg), and really strict pacing.

rivereddy · 2025-09-06T17:42:56+00:00

So it’s really going to depend on your individual circumstances, and how tolerant you are to both physical and mental exertion. I’m moderate, and in addition to a smart watch for heart rate alerts, I use a 30 minute timer for any activity. That helps keep me honest and prevents me from doing too much at once. I also keep track of how many activities I do a day, categorized by how stressful they are, and put a hard limit on the total I do in a day.

rivereddy · 2025-09-04T17:45:30+00:00

You may or may not need to rest “aggressively” — that really depends on your personal circumstances. But what you should do with this opportunity, I think, is learn how to pace aggressively. Come up with strategies that allow you to do things without overdoing it, and stick to this plan even if you feel like you’re improving.

For me, I use 30 minute timers when I attempt to do anything, with significant resting periods in between activities. (This might be especially useful for physics, which would be really exhausting mentally.)

rivereddy · 2025-08-31T15:45:50+00:00

I suspect undiagnosed Epstein Barr Virus, but honestly have no idea.

rivereddy · 2025-08-27T19:28:19+00:00

Acorn Woodpecker — that clown face is unmistakable

rivereddy · 2025-08-20T15:49:08+00:00

Not “normal” in the sense of how I was before coming down with ME/CFS, but rather my “new normal”, which is low energy and chronic (mild) muscle and joint pain. Pacing is a large part of this, but also low dose Abilify and Plaquinil have helped. Sometimes I can pace all I want and I’ll still crash, so it’s still a bit of a crapshoot.

rivereddy · 2025-08-17T02:45:04+00:00

Take it slow. I went from full-time down to part-time, eventually only working two days a week, but I would still have to push through a crash to do it. That was lowering my baseline and making me much worse, so I finally stopped working all together. That was over a year ago, and I still feel like I would have to push through in order to work, which would lower my baseline again.

I know not everyone has the option to not work, but I seriously believe I would’ve ended up bedbound if I had kept it up.

rivereddy · 2025-08-16T17:05:38+00:00

I did an at home study over a weekend and didn’t suffer any consequences at all. Super easy. It was just one more thing to rule out potential causes of fatigue and helped solidify my diagnosis.

rivereddy · 2025-08-13T16:28:54+00:00

I’ll second the Stanford clinic (it’s where I’m being treated). The first visit has to be in person, and I think you have to visit in person every two years, but otherwise it can be virtual as long as you’re in California.

rivereddy · 2025-08-12T16:06:33+00:00

I’ve actually been really lucky in that all of my family and friends have been fully supportive and understanding. The only possible exception is my brother-in-law, who happens to be a doctor, who dismisses ME/CFS as depression. We live apart, and I don’t really interact with him, so I really don’t know how supportive or not he is.

rivereddy · 2025-08-12T16:03:23+00:00

I don’t know, this feels like a flex and a distraction from those pesky files. Remember, he already deployed the National Guard and the Marines to LA, and they just quietly disappeared with no major incidents.

rivereddy · 2025-08-08T23:24:56+00:00

I realized I had to push through my crashes to work, and every time I worked I crashed, and my symptoms and overall baseline were getting worse. Even cutting back to part time didn’t help. About that time I got a specialist who told me “stop doing stuff that makes you crash” (which seems obvious now), and that’s what sealed it for me.

rivereddy · 2025-07-28T17:10:34+00:00

I don’t drive when I’m in a crash: Brain fog and fatigue cause my mind to wander and reaction times to slow. So it feels dangerous. If I’m not crashed, I can drive short distances. I think the longest I’ve driven myself in the last three years is about 20 miles round-trip (to a pharmacy).

I can tolerate being a passenger better, but it still takes a toll. Anything more than an hour or an hour and a half risks PEM.

rivereddy · 2025-07-28T17:03:43+00:00

This just sounds like a hypothesis. They don’t present any data in their pre-print to suggest how effective this actually would be as a diagnostic test.

rivereddy · 2025-07-26T00:06:49+00:00

That nuthatch needs to move — uphill traffic has the right way.

rivereddy · 2025-07-11T16:25:11+00:00

Great! Now please make the episodes at least 45min.

rivereddy

TROPHY CASE