Why is showering so PEM/OI inducing

For me I think the hard parts are: being upright, lots of arm movements that you can't delay, drying / dressing is particularly tiring. I think the heat as well, even if you avoid too hot water. I got a bathrobe to help with the drying / delay dressing until I 'recover' a bit from showering, and it made a difference.
 
Agreed. It’s always been the hardest thing for me at all severity levels. Nothing can make it easier vs eg even giving a presentation or having to do something quite manual eg at work you could adrenaline up somewhat

Might be a stupid side question trying to narrow it down but..

Can anyone here with me/cfs still manage to comfortably have their hair washed in a salon ie without a shower. Particularly if it’s not in a hectic salon etc. Or much travel

It’s hard to compare the two I guess because I gave up having that over a decade ago for various reasons

And it isn’t like even tho someone else is theoretically doing the work it isn’t actually hectic because it’s never a comfortable position and someone moving your head means the muscles are engaging in rest of body keeping it still. And for us it’s not far off being upright

But is it an interesting comparison to discuss as depending on the person doing it there could be lots of time with water blasting the head or not

But it’s not the body etc.

I definitely fund sitting down helps get thru it but I’m not sure how much less exhausting it is for it as I’m still needing to lie down after etc

I have noticed one of my worst ones with regard pace points being off the scale ie well over a days worth of points for a shower with hair was during the summer when it was hot but there were other factors and when I’m not well but eventually have to try it with help then the same task is much more points vs not as ‘ill’ and ‘found a moment I felt up to it even if it’s a weird time to be showering’
 
Very curious to read the thoughts and experiences of others here. It has been a while since I have dared experiment, but for a long time, a hot shower was the one thing that would reliably make me feel normal, really normal - my brain would clear, my limbs ceased to weight me down, I had no desire to sleep - but only for a minute or two at most, then the fatigue would return. A minute or two after I got out, I would crash - not necessarily entering PEM, but sudden, bone-crushing, sink-through-the-floor fatigue, lasting a few hours.

I have yet to find ANYTHING else that has given me that sudden sense of "oh my God, I feel ok" that a hot shower could. Warm temperatures outside of the shower destroy me right away, so it would not seem to be that.

For a while, I managed lukewarm showers, and even experimented with cold showers. These were stressful, but did not seem to have the same effect. Unfortunately, as time went by, the sensory overload - partly the water hitting my skin, but mostly the NOISE - made this seem like a more and more risky activity to engage in, so I have been to scared to try even a room temperature or cool shower for some time.
 
At my worst, having a bath triggered much worse PEM than a shower, I assumed this was temperature related as it was easier to create a tolerable shower temperature than a sustainable temperature for bathing, though being upright was problematic meaning I was showering once a month or less.

However as I have improved over a number of years showering is now relatively more tiring than bathing. I am now better able to deal with a warm bath but being upright limits showering. So now I can bath once or twice a week., but no longer shower.
 
I always assumed it was down to the stress/strain of having to hold yourself upright and under/away from the water, and maybe getting your body into positions where the water can actually wash away the soap. Maybe also having to manoeuvre in a tight space? I mean, I don't have ME, but I still find showering quite uncomfortable and stressful.
 
I’m moderate - my experience of showering is variable. When I’m at good for me sitting down showering is ok. I was able to get the shower set up to my needs when i refurbed my house so I have everything at the right height and enough space to manoeuvre. It is definitely the standing in one spot aspect that causes me difficulty. I actually feel warm water on neck and shoulders gives me a boost in the winter and tepid water similarly when the weather is too hot. If im bad I don’t shower as it is too draining Depending on how bad I don’t wash or use wet wipes or a flannel wash. Frequency of showers can go from nearly every day in a week to maybe once or twice.
 
In my severer years the OI was so bad I would have to stand with my legs as far apart as possible to keep a balance. Some days I was so weak I was even trying to hold myself up with the added legs far apart. Not a comfortable feeling and very concerning experience over and over.

I eventually got a stool for the shower and still have it there even at moderate. I'm always careful to monitor water temperature and the moment I feel like I am getting too hot I adjust to cooler water and sit down until I adjust and feel okay again. This happens mostly in the winter months when I need the water to be warmer but then suddenly I find I am hot and feeling imbalance.
 
Me, too:
Sean said:
Showers have a price. I often lie down for a bit after one, depending on various factors.
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Some observations I’ve made about taking showers:

-Sitting is easier than standing, but even sitting can be hard.
-My heart rate can increase 50 bpm above resting in the shower, even when sitting still.
-Washing my hair is the most tiring thing about showering. (In other aspects of life, using my arms is very difficult, especially if my arms are raised, so it makes sense that washing my hair is a difficult activity).
-OI is much worse for me if I shower after eating. (Also, sitting up to eat also causes worse OI if I’ve just had a shower).
-If I shower in the evening, even a few hours before bed, it makes it very difficult to fall asleep and get any semblance of good sleep once I finally get to sleep.
 
wingate said:
Some observations I’ve made about taking showers:

-Sitting is easier than standing, but even sitting can be hard.
-My heart rate can increase 50 bpm above resting in the shower, even when sitting still.
-Washing my hair is the most tiring thing about showering. (In other aspects of life, using my arms is very difficult, especially if my arms are raised, so it makes sense that washing my hair is a difficult activity).
-OI is much worse for me if I shower after eating. (Also, sitting up to eat also causes worse OI if I’ve just had a shower).
-If I shower in the evening, even a few hours before bed, it makes it very difficult to fall asleep and get any semblance of good sleep once I finally get to sleep.
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All of this is in complete agreement with my own experience.
 
DHagen said:
Very curious to read the thoughts and experiences of others here. It has been a while since I have dared experiment, but for a long time, a hot shower was the one thing that would reliably make me feel normal, really normal - my brain would clear, my limbs ceased to weight me down, I had no desire to sleep - but only for a minute or two at most, then the fatigue would return. A minute or two after I got out, I would crash - not necessarily entering PEM, but sudden, bone-crushing, sink-through-the-floor fatigue, lasting a few hours.

I have yet to find ANYTHING else that has given me that sudden sense of "oh my God, I feel ok" that a hot shower could. Warm temperatures outside of the shower destroy me right away, so it would not seem to be that.

For a while, I managed lukewarm showers, and even experimented with cold showers. These were stressful, but did not seem to have the same effect. Unfortunately, as time went by, the sensory overload - partly the water hitting my skin, but mostly the NOISE - made this seem like a more and more risky activity to engage in, so I have been to scared to try even a room temperature or cool shower for some time.
Click to expand...
It’s so interesting for me to hear from those who got this later in life. I technically didn’t get this until late teens even in my mind

But I am aware that despite me making that assessment based on amount I could do eg at school and all the sport - and the just not having the recovery arc I expected after a bad tibsilitis that normally x weeks would mean slowly getting to y point in feeling but also fitness when doing those sports was so obvious a before and after for me that’s why I use that date. How could someone who could beat all in x-country etc not be able to get out of bed on the first big exciting holiday to somewhere exciting they’ve ever had.

And yet I don’t remember a time I ever enjoyed showed and remember I never showered in the mornings back then and the having to force myself to get into and thru a shower at end of day vs even when I’d been fine doing whatever running training after busy school before that and not being sleepy. Or even then showering was something my body found exhausting vs sport.

And when I regularly got very ill from tonsilitis the trying to have a shower was the test to see if I was on the mend as even tho at that point I felt up to trying then it was seeing if I went white and had to shakily lie back down a few minutes in etc.

So its always been that way for me

As another strange thing the one sport that utterly finished me off after was swimming and as it was a sport that beyond getting the gold life saver type thing young due to determination I was rubbish at and was never going to even be needed for a role in school house duties for competitions. Just going to the local pool with a mate of two not doing much actual swimming would leave me feeling a level of exhaustion of drowned rat tired to the bone that I never felt from doing actual sport or running around on a bike or skates that I think generally invigorated me

I assumed it was to do with the all muscle resistance - whatever I was doing in the pool. And the sinus type thing plus all the faff of having to shower and dress in damp changing rooms after you are done and tired (where you can wait to shower at home and rest first either any other sport).
 
Sean said:
Showers have a price. I often lie down for a bit after one, depending on various factors.

OTOH, a hot shower is very good for soothing sore muscles and stimulating blood flow.
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On that note I use heat pads a lot on a lot of body parts at sane times often and get that easing but without the downsides of bath or shower

I’ve never really liked baths but also then of recent years just looking at the tubs svailsble to me they look so uncomfortable just staying upright ie aren’t ethnic ones to my aches and short for me and angles at back and hard to it would be energy trying to hold my core any way I would lie vs those of my friends I see who have baths and love them having ones where they can lie down and look comfy - so it’s not a fair comparison

However the few times I’ve had to do a bath in recent years for medical reasons not to do with me/cfs I’ve had extreme itching in legs after ie drawing blood level from proper clawing scratching needed particularly on calves - and i didn’t realise this is perhaps something not uncommon with polycythemia issues I have (tho low on ferritin) but I also have a lot of unexfoliated skin as I’ve not had to shave legs for decades so there might be lots of dry skin there others don’t have because they do shave them etc.

I do itch a bit after a shower but not to that extent and in places like my sides and the odd patches so I just have graffiti marks after eg red claw lines round where sides of shoulder blades are a bit not having realised I’d done it . And no part is getting doused to same extent legs being sat under the water in a bath meant
 
wingate said:
Me, too:


Some observations I’ve made about taking showers:

-Sitting is easier than standing, but even sitting can be hard.
-My heart rate can increase 50 bpm above resting in the shower, even when sitting still.
-Washing my hair is the most tiring thing about showering. (In other aspects of life, using my arms is very difficult, especially if my arms are raised, so it makes sense that washing my hair is a difficult activity).
-OI is much worse for me if I shower after eating. (Also, sitting up to eat also causes worse OI if I’ve just had a shower).
-If I shower in the evening, even a few hours before bed, it makes it very difficult to fall asleep and get any semblance of good sleep once I finally get to sleep.
Click to expand...
It definitely registers.

I’ve had hospital trips with big waits under lights etc including a trip to A&E and those obviously leave me with a lot of PEM to recover from for many weeks. Yet compared to a shower on the heart rate monitoring they are nowhere near some of my worst showers. I’m talking twice the points and more for the shower, I’ve had one be over 30 points (really wasn’t feeling up to it for ages then had to eventually around two weeks as I do actually smell and hair and scalp issues etc)

Now for both I’ll obviously have to lie down and eventually will sleep once I’ve got comfy and relaxed straight after. But shower is certainly no less of a scrape to bed shaking for at least an hr lie down depending on the day. Where I could eat dinner after one hospital trip before collapsing out.

But even when I was more well and working full time doing quite physical things despite being ill I’d regularly have to step out if shower and lie on floor even with shampoo in hair as I was about to collapse.

On the PEM front on the other hand I know I can’t do more than rarely appointments of that kind as who knows when I eventually am recovered from that given its many weeks and I don’t just get a break from everything else

But also that showering has to be done eventually by 2weeks in even with help etc.

And of course I can’t do the appointments without having done the shower ideally in the preceding week so I’ve my dignity.

But I’d say short term the shower takes it out of me far more extremely

But an appointment longer on the PEM and declined threshold for weeks. Yet it’s more the bit that hits me in the days after where shower is ticking clock from moment I get in to collapse and I barely scrape to lying down after often. A very good month is where after an hour plus lie down after shower I might be able to watch tv eat or brush teeth that day having resurrected enough.

And the appointment stuff shows on the heart rate pace stuff only as how the same routine or activities = much higher points for the days and weeks after ie just lying not flat could become activity or exertion filling all my points

Where the shower does satisfyingly ‘show’ very much on the hr graph about how it feels at the time. Like trying to summon over a full days worth of pace points just for one shower.

And then I think it does affect the pace points vs activity in the days after but it’s harder to plot as I have to do it more regularly and worse showers are when I’m feeling more rough anyway.
 
The whole palaver around having a shower adds to the exhaustion. I get it set up earlier in the day, with floor mat and bath mat and stool and towels and clean clothes all set up ready. The tasks of undressing, showering body and hair, towelling hair and drying body, and dressing all having to be done sequentially without breaks is exhausting. It's almost all done seated, on shower stool and loo lid.

I tried giving myself a rest break by putting on a towelling robe and lying down before drying myself and dressing, but found that worse, as it meant struggling a wet body into the robe and then, after lying uncomfortably for a while, having to get moving again to dry and dress. I do leave my wet hair wrapped in a towel for a while before stting up to brush and use a hair dryer.

I tried for several years having carers coming several times a week to help me shower and wash and dry hair. I stopped at the first pandemic lockdown and never re started, partly because of continuing to shield, and partly because I realised it was just as exhausting with helpers. I kept having to explain to new carers what I wanted done, and to put up with them inexpertly not rinsing my hair properly and directing hot air from the hairdryer onto my face, and most of them were quite chatty too.

I save some energy by living day and night in nighties that only get changed after showering, and just adding clean knickers daily and cardigans when needed, and a skirt over the top so I look dressed if we have visitors.
 
I don't get a lot of PEM from showers, but baths were a whole other matter. It was awful, my muscles would go so weak I could barely get out. My shower was over the bath, so even after I switched to shower-only mode I had a lot of painful falls from climbing over the sides.

Now I have an ensuite wet room, and showering's enjoyable rather than something to dread. I can sit under the water, washing a bit at a time, and revel in the pain relief. (I sometimes get up in the middle of the night to shower my legs, hot water's the best treatment I've ever found for severe muscle and RLS pain.)

I've always bathed/showered last thing at night. It's only six steps from the shower chair to my bed, so I get out, wrap myself in a big towelling bathrobe, put another towel over my feet, and lie down. Once my skin's dried enough I just get into bed.
 
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