Do you get post-exertional malaise from being outdoors?

hedgehog

hedgehog

Senior Member (Voting Rights)
Do you get post-exertional malaise (PEM) from going outdoors, not related to exercise? If so, do you know what causes it in your case?

I've tried to reduce all the triggers of PEM I could think of when going outside, but I still get PEM. The possible triggers and solutions I've tried:

sun/light - skin completely covered by clothing, sunglasses, hat
sound - ear plugs, noise cancelling headphones
exertion - wheel chair, lie down instead of sit
allergens/pollution - I don't have a solution but having the windows open doesn't cause the same problems, so maybe this is ruled out?
temperature - only go out when it's comfortable

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Edit: More PEM triggers and workarounds that have been mentioned by people in the thread. Thanks to @Hutan , @Alvin , @Ravn , @roller* , @dangermouse , @Subtropical Island , @duncan , @Milo , @Mij , @Forbin

Triggers:
-Socializing
-Concentrating or focusing (ex on balance)
-Ozone
-Unfamiliar or busy places
-Being on high alert or anxious
-Smells, glare, breezes, vibrations, moving scenery
-Anticipation
-Being unable to leave/stop
-Obstacles (stairs, uneven terrain)
-Preparation (getting dressed)
-Vestibular problems, angina

Solutions:
-Drink plenty before going out
-Avoid talking
-Seek a quiet place, in the shade
-Find a time of day that causes less PEM for you
-Be attuned to what your body is telling you about when it's time to leave
-If you're having trouble determining cause and effect, try experimenting by doing exactly the same things but go to another room instead of outside.
 
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Could it be the whole energy consuming process of going outside e.g. putting on the protective clothing, being bumped around, people communicating with you, effort required to monitor new surroundings?

Perhaps you could try an experiment and do exactly the same things, but end up in a different room rather than outside?
 
I have thought about this and have also found that when leaving the house i can't often just stop and do nothing till my functioning comes back (or lay down). At home i can do at my own pace and rest whenever i need.
Also being outside the home uses energy, just being aware of your surroundings, the noise and human interaction, the figuring out things at places like grocery stores, the finding, the decisions, its all energy.

Finally weather is not fun, overheating, freezing, wind, noise, movement, vibrations and moving scenery all need energy.
 
Hah! I'm not the only one after all! Thanks for making me realise. I always thought that was just one of my weird idiosyncrasies. Have you considered putting up a poll to see if there are any others @hedgehog?

Sadly, I've no solution either. Like you, I've tried everything I could think of - pretty much the same things as you in fact - to no avail.

I do have a known, life-long problem with sun: I get Polymorphous Light Eruption with rash and systemic flu-like symptoms so initially I assumed that's what the problem was. But full sun protection, while it protects against the PLE, doesn't make any difference to the PEM issue.

However, I have made a couple of additional observations. One, it's less of a problem in winter. Two, I can go outside in the morning or evening even if it's just as sunny, windy and warm as in the middle of the day. Is that the case for you, too, @hedgehog?

I'm now wondering about air gasses like ozone or nitrogen or others. Apparently they have seasonal as well as diurnal variations with some peaking and others troughing during the middle of the day - just when I have a problem being outside. And I believe those peaks/troughs are less pronounced indoors (I could be wrong).

A quick google came up with a paper linking ozone concentrations and stroke. I haven't read it but it looks like gas concentrations could at least theoretically have a physiological effect, conceivably on blood flow - which is a suspected factor in ME. But all pure and wild speculation on my part. Haven't looked into it in any depth because there really isn't much we can do about the air we breathe.
 
roller* said:
its the eyes.
too much input.

or the vestibular system in general.

not necessarily in the meaning, that there is a huge load of sensors, but that it is a major change, compared to indoors, the space your vestibular systems knows (is adjusted to).
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That’s very interesting!

I have great difficulty being outside. I have Angina too so that is part of it, but I get spaced out, derealization, dizziness and nausea if I’m walking outside. It happens fast, I can’t go out on my own.
 
@Alvin So true about interactions, decisions, etc. taking a toll! I get PEM just from lying on my doorstep by myself, though. I'm so glad you brought up vibrations. I actually wanted to make a thread asking about that but thought I might be imagining it. Vibrations from air conditioning, the laundry machine, and the swaying of a building on upper floors are all draining. I like your point about being used to everything at home.

@Ravn That's a good idea- I don't see a way to add a poll after the fact. If I get energy, I'll try to ask a mod if there's a way to do it, but I'm in a crash at the moment. I wonder if Polymorphous Light Eruption is more common among ME patients. I get sun rash too, but it's not red.

I wonder if you have less of a problem in winter because it's cooler, which I think constricts bloods vessels and raises blood pressure a bit? That might be helpful if you have POTS along with the ME. I haven't noticed a difference in times of day, so I'm afraid I don't have answers about that. Could it be you're naturally more tired at certain times of day, or does it only happen when you go outside?

What you've said about ozone is interesting. I've noticed feeling worse on days of high ozone whether inside or outside but haven't narrowed it down to times of day the way you have, as it's confusing to weed out what's causing what.

@roller* Thanks for the helpful information about the vestibular system!
 
hedgehog said:
I wonder if Polymorphous Light Eruption is more common among ME patients.
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I've mentioned PLE in a few threads here and there and never got much of a reaction so I doubt it's more common but who knows. What I do find interesting about it is that it is in some ways similar to PEM in that it is a delayed immune reaction but I have no idea what that similarity means if anything at all.
hedgehog said:
I wonder if you have less of a problem in winter because it's cooler
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I am certainly better in cooler temperatures but where I live we get plenty of those those in summer, too. Plus heat makes me miserable at the time but as soon as I'm cooled down I'm ok again, it doesn't give me PEM.
hedgehog said:
I've noticed feeling worse on days of high ozone
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How do you know if a day is high or low ozone?
 
@Ravn The delayed immune reaction sounds like one more piece of the mystery. If you're in the US, airnow.gov has daily ozone readings based on zip code. I think air pressure may also have an effect on symptoms. Pressure's usually listed along with temperature on weather sites.
 
I think you have to figure out what you mean by outdoors.

How about:
A covered porch?
City or country?
Quiet or busy?
Controlled environment or slightly unpredictable?
Courtyard?
Trees vs built up area?
White noise or not? (Outdoor white noise could be wind in trees etc - doesn’t have to be artificial but if there’s white noise inside, maybe it helps you to have?)

And what factors can you try on their own?
Glare
Light levels
Noise
Familiarity
Air quality
Security/predictability (anticipation can be draining)
Preparation (@Ravn’s idea of prepping to go outside but going to another room is brillant)
Smells
Breezes (sensations that keep coming)
Inability to stop

....

I find outdoors good. But if it does not cause PEM it is:
always at either end of the day, shaded, quiet but with constant gentle sounds like leaves, no glare, familiar, no chance of people passing/turning up/changing things, green, I can sit or lie down comfortably, there’s something easy to look at, the light, sound and temperature are kept constant, skin is covered, I know I can stop at any moment.

I personally find that overload can be a problem - contributor to delayed PEM.

I personally also found a correlation between airing out the house (I live out of the city) every day and some of my improved function.

Now I think about it, I realise that I always need to rest after being outside though.
 
Every one of these posts has made me think. I live in a pastoral setting, and going out into my yard does not evoke PEM. It should, but it does not.

BUT, going outside in general can evoke PEM. For me, it seems to be focusing or concentrating too intently or too long. So, @hedgehog , a question that for me arises is does your alert level or just your concentration level change?

If I go out into any environment be it my yard or my neighbors (never happens anymore) or a car where I have to focus or pay attention - then PEM may ensue.

But it's not just going out. I can go to my GP, and PEM is the price I pay because I have to focus. But I go to my Lyme doctor, and I am so relaxed and confident; if I suffer from PEM it's from the driver taking me there. But going to my ME/CFS specialist, which is very far, I do not need to focus because it's via train, and my doctor is easy, and although it's very far, PEM is limited.

It's not necessarily anticipation for me, or concern, it's focus, and I see it when I read an abstract - no PEM - but trying to read a full study will destroy me.

So, maybe more food for thought?
 
I can easily crash myself inside my own home by talking on the phone, by doing cognitive work or by doing housework.

I can go outside and not experience a crash, providing i control most of the variables that can give me a crash.
- I try not to talk to anyone (talking seems to make things worse for me quite rapidly)
- I use my mobility scooter
- I seek out quiet places.
- I make sure i drink plenty if it’s hot outside (and avoid hottest time of day)
- i watch for my body telling me when it’s time to head back and rest.

For someone who has been housebound and seek to get out, there needs to be a carefull assessement of how much energy is involved to simply get out (stairs, dressing up, being upright, number of steps needed to the car, need for family member to be present) and try to minimize the obstacles as much as possible.
 
hedgehog said:
If you're in the US, airnow.gov has daily ozone readings based on zip code.
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There doesn't seem to be any detailed enough data available for where I live. Oh well, never mind. The whole ozone idea was just a very long shot anyway, probably not worth spending a great deal of energy on, especially since there isn't much we can do about it.
Subtropical Island said:
Preparation (@Ravn’s idea of prepping to go outside but going to another room is brillant)
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Agreed, it's a great idea. Would have been proud to call it my own but credit where credit is due, it was @Hutan who came up with it.
 
Ravn said:
There doesn't seem to be any detailed enough data available for where I live. Oh well, never mind. The whole ozone idea was just a very long shot anyway, probably not worth spending a great deal of energy on, especially since there isn't much we can do about it.

Agreed, it's a great idea. Would have been proud to call it my own but credit where credit is due, it was @Hutan who came up with it.
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Oops! Sorry @Hutan!

Love reading both your comments so I guess I must’ve filed your names in the brillant comments category of my brain.
 
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