symptoms in hot weather: I’m wondering whether... - PMRGCAuk

PMRGCAuk

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symptoms in hot weather

calibriel profile image
65 Replies

I’m wondering whether there’s a link between extremely hot weather, and symptoms of PMR/pred side effects? I’m normally well and virtually symptom-free on 3mg tapering to 2.5, but felt very stiff and uncomfortable during the UK July heatwave, so that at first I thought it was a flare: but when the weather got cooler, I went back to normal. Something similar is happening during the current heatwave, so I’ve paused my planned reductions, hoping to resume when and if I feel better again. Anyon else got any thoughts?

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calibriel profile image
calibriel
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65 Replies
123-go profile image
123-go

You'll find some answers here, calibriel, with the same question posted by Sharitone and found in Related Posts:

healthunlocked.com/pmrgcauk...

At the moment I'm dripping after taking a few steps. It will be cooler next week! Yay! It won't hurt if you stay on your current dose for another week 🙂.

Longtimer profile image
Longtimer in reply to 123-go

I do wonder if sweating with this heat we need sa lt, or more of it......I have often read with adrenals struggling we need more salt. I cook everything from scratch...don't add it to food or my meal...(O H does).........never thought about till this heatwave....

PMRpro profile image
PMRproAmbassador in reply to Longtimer

Very possibly ...

Longtimer profile image
Longtimer in reply to PMRpro

Think I'll start a light sprinkling on my meals.......can only but try....

PMRpro profile image
PMRproAmbassador in reply to Longtimer

HeronNS has a technique to see if you need salt ...

HeronNS profile image
HeronNS in reply to Longtimer

I was on holiday a few years ago and every morning woke up with a headache which usually, not always, went away with food, but I also was taking aspirin. Which meant at dinner I'd have to turn down the included glass of wine. On the last evening my neighbour at table, when I explained about the headaches, remarked that I was probably salt deficient. The technique PMRpro is likely referring to is what my table mate told me to do. Sprinkle a small amount of salt on my side plate, lick my fingertip and pick up a few grains of salt. If it tasted good to me, almost sweet, it would mean that I needed it. I was to keep on doing this, tasting a few grains at a time, until it no longer tasted good. I didn't actually reach that point that evening, but will note here that I woke up the next morning with no headache! The following evening I was staying with my cousins and asked them to let me have bit of salt. At first it tasted nice, then quite suddenly it tasted awful and I knew then that I had finally consumed enough.

It interested me to find out that several other apparently unrelated symptoms also cleared up at around the same time. Can't remember them all but they included a sensation that my heart was "skippy" although complaint to a doctor had revealed no problem. I think my skin also seemed to become more resilient in that if you pinched the skin on the back of the hand it would return to normal right away, rather than staying pinched for a few seconds. I think this showed I was better hydrated. But it was the morning headache cure which really made me happy. It was something which had started before I had ever taken pred, but only occasionally, and had become over time much more frequent.

I found a calculator on-line and, slightly overestimating to make sure, I figured out how much salt I was taking in and it was almost certainly under 1000 mg a day. This would have been when I had only been on pred a couple of years and still eating hardly any prepared foods, including bread, which would have contained salt. We had removed the salt shaker from our table decades earlier. So, yes, I was salt deficient.

The taste test only works when you eat the salt alone. On any food it is, of course, just going to make the food taste better! Remember, just a few grains at a time, and continue only if it tastes good. I assume this is how mammals which seek out salt licks know when they've taken in enough salt. 😋

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Thank you!

Longtimer profile image
Longtimer in reply to HeronNS

That's really interesting thank you.....will definitely do a salt test as you have e xplained...

HeronNS profile image
HeronNS in reply to Longtimer

I've often wished I had contact information for that fellow traveller so I could let her know how much she helped me.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Bet if you advertised n FB you could find her!!!!!!!!

Longtimer profile image
Longtimer in reply to PMRpro

Hate to say it, but you won't find me on there or anywhere other than here!....I'm very fussy!..😂....

PMRpro profile image
PMRproAmbassador in reply to Longtimer

It has its uses ... Free video calling using Messenger and some indication of where my offspring are and what they are doing!

HeronNS profile image
HeronNS in reply to PMRpro

I did track down someone I'd met in New Zealand and we are FB friends, but other people I've tried to find are not there.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Longtimer

As PMRpro says it is useful -my daughter is in NZ -snd we use messenger a lot - free video calls are essential over the miles involved!

You don’t need to get involved in the “rubbish” if you don’t want to!

Longtimer profile image
Longtimer in reply to DorsetLady

Certainly if I had relatives abroad I would use one of the other......

HeronNS profile image
HeronNS in reply to Longtimer

You can make your name not searchable. That kind of defeats the purpose from my point of view, but a friend of mine used FB for one purpose only, to communicate and share pictures of family with her daughter who lives in another province. She would not agree to be friends with anyone else, other than family.

Longtimer profile image
Longtimer in reply to HeronNS

That's good .....didn't know that....

HeronNS profile image
HeronNS in reply to PMRpro

Unfortunately I don't know her last name. Not even sure I have her first name right.

Longtimer profile image
Longtimer in reply to HeronNS

Yes, very helpful to you.....

PMRpro profile image
PMRproAmbassador

It seems to depend - some people find heat beneficial, others don't. I don't have a problem with heat or cold as such - but accompanied by humidity or wind I can really be uncomfortable.

Seacat30 profile image
Seacat30 in reply to PMRpro

My old barometer is moving towards humidity. Hot and humid - ugh!

PMRpro profile image
PMRproAmbassador in reply to Seacat30

Indeed!

Viv54 profile image
Viv54 in reply to Seacat30

Oh Oh 😞

calibriel profile image
calibriel in reply to PMRpro

Heat is good: extreme heat not so. But then I’m not standard (who is?). For instance, I found my existing problem with fluid retention actually got better on pred …

PMRpro profile image
PMRproAmbassador in reply to calibriel

Where do you draw your lines? What is extreme heat?

calibriel profile image
calibriel in reply to PMRpro

I suppose I’m accepting the classifications offered by others- apparently the temperature broke records for the UK last month; but also the evidence of my own bod. I’m just a fair-skinned northerner who’s never sought out the heat, on holiday or any other time. I’m not used to it

PMRpro profile image
PMRproAmbassador in reply to calibriel

Well yes - over 40C in the UK or anywhere else come to that is pretty extreme! But there are people who are struggling and complaining bitterly at 28C which really isn't extreme, just warm!

Viv54 profile image
Viv54 in reply to PMRpro

Feels extreme to me atm.😁

PMRpro profile image
PMRproAmbassador in reply to Viv54

We've dropped back to 28C from mid-30s in the afternoons. REaltive bliss ;(

123mossie profile image
123mossie

Another vote for adrenals not keeping up with their work. I got similar in very hot days last year, although more fatigue & lightheadedness than stiffness. I was at about 2.5 at the time. I seem to have coped better this year, now on 0.5mgm

diana1998 profile image
diana1998

I'm sure there is for some. I felt very stiff during last extreme heatwave, Not so bad this time. I'm waiting for cooler weather to try to drop to 2.5mg.

Viv54 profile image
Viv54 in reply to diana1998

I didn't seem as affected as much by the last heatwave, this one has knocked me for 6 😞

Songbird6 profile image
Songbird6

I have definitely found the heat has affected me, I felt better in the brief, cooler weather in between July and now. Symptoms are worse and my body feels bloated and my ankles are swollen.

Viv54 profile image
Viv54 in reply to Songbird6

That's exactly me , add in legs that feel like lead and wooden poles ,aching from head to toe 😞

Louisepenygraig profile image
Louisepenygraig

I've been wondering about that. I'm down to 5.5 mg which is the lowest I've ever been and I've been struggling with the heat the last couple of days in a way I haven't before. In fact just thinking about it i coped better in the earlier heatwave when I was still on 6 so maybe I've answered my own question!

calibriel profile image
calibriel

Thanks everyone for interesting and supportive replies. I’m looking forward to the forecast cooler weather tomorrow! (and, no, I won’t be complaining of the cold - not for a while yet 😉)

LemonZest11 profile image
LemonZest11

Hi calibriel, I live in Western Australia where our summer temperatures can reach 40C for days on end. Nobody enjoys that kind of heat! I haven't found the weather to be of any consequence with regard to PMR, but it can just be a bit of a bugger with everything else! The cold is worse I have found, and we have relatively mild winters.

calibriel profile image
calibriel in reply to LemonZest11

But it is relative, isn’t it - what you’re used to? I know I’m not good in the heat: I don’t choose to holiday in the sun, and if I do find myself somewhere where it’s hot, I stay indoors in the heat of the day. The temperatures here have been a good 15deg hotter than I’m comfortable. Lovely though I know it is, I wouldn’t choose to visit Australia in the summer. I know my limits: at my age, it’s too late to acclimatise.

LemonZest11 profile image
LemonZest11 in reply to calibriel

Completely agree. Xx

diana1998 profile image
diana1998 in reply to calibriel

When we went to Perth and Melbourne, we deliberately chose to go in June and July. In Melbourne some nights were minus 3c but 17c in the day. Lovely. I did have to buy a scarf though for the evening!!

LemonZest11 profile image
LemonZest11 in reply to diana1998

For Melbourne, that was mild. You would have enjoyed the Perth winter.

diana1998 profile image
diana1998 in reply to diana1998

Yes. We were there for 5 lovely days. But when we went round the Great Ocean Rd it was slashing with rain 😳 deserted though 👍

PMRpro profile image
PMRproAmbassador in reply to diana1998

Not a bad day to go possibly, though next day might have been better. We arrived in Melbourne to torrential rain and about 5C. We'd wanted to do the penguins but hadn't got ski gear with us!! The next day we set off along the Ocean Road and stopped at all the requisite places - actually stalking a local guide doing a private 1-2-1 tour. He was telling his client that because of the storm the previous day we were seeing things that were really rare - water shooting up through holes in the rocks amongst other things. It was fantastic. And still pretty quiet :)

diana1998 profile image
diana1998 in reply to PMRpro

We landed in slashing rain too! Loved the nice winter days. We went in 2009. That will do now. Passports have run out!!

PMRpro profile image
PMRproAmbassador in reply to diana1998

We'd just driven down from Brisbane via a few days in Sydney so it was a nasty shock! Must have been September, the meeting was end of August, so Brisbane had been pretty cosy! After Melbourne we went to Uluru and Alice Springs so Melbourne was a change!

diana1998 profile image
diana1998 in reply to PMRpro

Gosh yes, a huge shock to the system.

diana1998 profile image
diana1998 in reply to LemonZest11

Wz

AmberAliona profile image
AmberAliona in reply to LemonZest11

I spent the first 30 years of my life in Perth, and I usually thrive in the heat. Living in the UK now I return every couple of years to get my blast of proper heat, however, this heatwave has knocked me out. I had Covid a few weeks ago, and wonder if that has something to do with it.

LemonZest11 profile image
LemonZest11 in reply to AmberAliona

Perhaps it has something to do with the kind of heat you've been experiencing, very humid I believe while WA's heat tends to be more dry. And of course the housing is very different with air-conditioning not common. And then there is the good old aging factor which tends to make everything just that little bit more difficult. Hope you make it back for a swim in the gorgeous Indian Ocean this summer.

AmberAliona profile image
AmberAliona in reply to LemonZest11

Yes, I have considered all that, and hopefully I’ll be back on Cottesloe beach early next year. It is definitely a different heat. Thank you xx

Viv54 profile image
Viv54

I sympathise, I'm in real pain since this heatwave ! I've been ok when the heat has been normal.But with this heat my legs feel heavy like wooden poles and I'm aching from head to toe ! So much so that I have had to stay in while this hot. Many people on here are in the same boat, it seems it has something to do with air pressure, this makes perfect sense to me as I'm far better in the cooler weather. I'm tapering from 7/6.5 going slowly till this passes.Btw I had no idea I thought it was just cold weather that affected us !🌹

PMRpro profile image
PMRproAmbassador in reply to Viv54

Does it help if I tell you that the locals here also stay in in the afternoons in these temps? Even we feel sorry for the guys on the building sites! You can tell the locals - we walk on the shady side of the street.

The place is dead again today - everyone is either indoors or sitting in the shade or they have headed up the mountain to walk where it is 1C cooler per 100m extra altiitude and there will be a breeze.

Longtimer profile image
Longtimer in reply to PMRpro

I doubt any humans can tolerate these extremes....now going up the dolomites thats another story....memories!

PMRpro profile image
PMRproAmbassador in reply to Longtimer

:)

Viv54 profile image
Viv54

Interesting, it makes perfect sense in my case atm.!

Longtimer profile image
Longtimer in reply to Viv54

Me too......

Thirkelly profile image
Thirkelly

I thought it was just me!

Nagswoman profile image
Nagswoman

Dehydration? Thinking back to my endurance riding days, I used to soak my horse as often as possible during the ride to help him to stay cool and also offer water to drink, to keep him hydrated and to help to avoid muscle damage. He only ever had a pulse over 44 at the vet checks. I expect that with inflammatory diseases in us, where inflammation creates heat, if the ambient temperature is getting close to body temperature, it becomes difficult for our body to lose heat, exacerbating the inflammation. I used to give my horse a tablespoon of bicarb of soda in his tea daily to help reduce the occurrence of lactic acid in the muscles but I draw the line at that, although maybe I will get some electrolytes like athletes use. Horse turned his nose up at electrolytes.I have had 2.5 litres of liquid today, so far, which I log onto my Fitbit and have the fan blowing on me all day. I feel OK. Neigh. Neigh.

To tell if the horse was hydrated, I did a pinch test. Pinch up some loose skin over his shoulder or neck. Let it go. If it sprang straight back to normal, he was OK. If it took more than a couple of seconds to go back flat = dehydrated.

Always had salt/mineral licks in stables. They got well licked in the summer.

ImC_ profile image
ImC_ in reply to Nagswoman

Not something I expected to learn on this forum but fascinating!

Nagswoman profile image
Nagswoman in reply to ImC_

We are not so much different from animals. In the absence of GPs I treat myself as if I were a horse. Lol.

HeronNS profile image
HeronNS

I definitely find my osteoarthritis is worse in hot weather (not that cold weather helps particularly, brings its own issues) and I've heard the reason is because the synovial fluid in the joints is expanding in the heat and causing discomfort, or something like that - don't quote me!

calicojoy41 profile image
calicojoy41

The weather is affecting me, I sweat all the time when I go out in this heat wave. My energy level is in the dumps, so I want to lie down and take a nap and I have some odd pains. UGH!!!

krillemy profile image
krillemy

I experience the exact same thing

calicojoy41 profile image
calicojoy41

I agree with you, during the heatwave just slow everything down!

MrsNails profile image
MrsNails

I thought for a while yesterday (see my latest post) that the Heat 🔥🥵🔥 had well & truly beaten me! Everyone was having a hard time tbh not just me but l possibly may have felt like my Number was up!

Heading back to ‘Normal’ now 🙏🏼

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