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Heat: 'I' love it.....does this make me weird as an MS sufferer?

Hi

Was listening to Radio 2 this lunchtime and Jeremy Vine read out lots of message from MS folk about how heat makes their lives unbearable. And I’ve heard/read many other similar tales. Whereas I’m the opposite: the hotter/sunnier it is, the better I feel all over. (It’s winter that really lays me low).

Got slightly irked by a mum at the school gates, who knows I have MS, touching me ever so kindly on my arm and saying ‘how well’ I seem to doing in this heat’? So is heat ‘acceptance’ or ‘craving of’ a PPMS thing or not? Am I just plain unusual? (Without wishing to resurrect “that thread” I suspect the callers to the Jeremy Vine show may have been not pp).

Nuff said. Your experiences with heat?

Cheers

CP

Hi CP

The heat and extreme cold plays havoc with my ms, but no, I don’t think you are weird. Remember ms affects us all differently, that’s what makes it so complex.

Springtime is my best, more of an acceptable spell, but there must be others like you who prefer the heat.

Forecast says its a heatwave, so get ready CP.

Pam x

Hi CP, Lucky you! It is only in the last couple of years that the heat has affected me. I used to love holidays abroad soaking up the sun. I remember going to a 6 week course on how to cope with ms and they were talking about the effects of heat and I hadn’t a clue what they were talking about. Mind you cold weather is just as bad. It can get pretty cold up here and I know from October onwards it is going to be hell. I am sure the cold contributed to my depression last year. I’m with Pam, springtime is best for me. Enjoy the heat wave. Mags xx

CP if you’re weird then so am I. I can’t tolerate the cold either and am thriving at the moment. I feel sorry for those of you who are struggling but this weather really suits me. I thought I was the odd one out but I’m surprised that there are quite a few enjoying this I’ve discovered between this forum and another I visit, which I thought was odd as everyone told me to take care not to get warm during my course. So we really do differ more than I originally thought.

Take care and let’s make the most of it while it lasts.

Cath xx

I’ve been uncomfortable in hot weather for a long time but it is only the last few years it has made me feel ill and severely worsens my MS. I do still have holidays abroad but I make sure I have access to a pool when sunbathing and air con all other times. I was RR for about twenty years and SP for the last four. I have spoken to a couple of MS’ers who are not affected by hot weather, it’s just one of those things that affects some and doesn’t others. Make the most of the nice weather it never lasts long enough. Jan x

My mood has been lifted by the real summer weather, and generally I like the warmth, but when warm becomes hot AND muggy then I start to feel grotty.

Not weird CP, unless we all are on here! I love to see sunny blue skies but this heat no! I am frazzled and even more dopey than usual. Hate the heat but hate the cold too so I am with Pam and Mags on this one…spring time is the best! Nina x

Temperature needs to be just right for me as well. But love the sun and sit in the shade in garden as long as thunder flies don’t get me!! Keep cool everyone Jackie xx

i have only been affected by the heat in the last few years,i have been diagnosed 22 years now,

i find the humidity a real problem though,that wipes me out completly, i like it nice and sunny and warm, up to about 25degrees,

any warmer i begin to struggle.

also winter time i can cope with cold, but if its in the minuses for days,it makes me feel very ill,even though my house is nice and cosy,the outside temp still affects me, strange beings arent we? lol…

J x

Hi Clucker,

If spasticity is you main problem then heat will improve your feeling. Spastic muscles dont like the cold yet love the heat. My walking is better in the heat. In the very early days of the spasticity I could walk about the house totally normally then as soon as I walked outside in the cold my leg became stiff and calf pulled the foot down so much giving me foot drop.

I have heard that people with a heavy load of brain lesions will suffer from fatigue big time which is exaggerated also by heat.

Moyna xxx

Heat gives me Utthoff’s which I’ve had on and off all day today… dizzy spells, double vision, wobbly and big pins sticking in my back. Today had headache as well but luckily no recurrence of migraine. Keep cool everyone… unless of course the heat is better for you. Last summer I bought a big tower fan from argos… remote control, loads of different settings, nightime setting which is very quiet and turns itself off after 1, 2 or 4 hours. Cost about £100 and was the best £100 I’ve ever spent. Pat xx

Hi Pat

The heat plays havoc with me as well, hope tomorrow is better for all of us.

Take care hun x

Pam x

Thanks Pam… you too. Pat xx

I have felt better in myself while we’ve had good weather - no noticeable changes in symptoms but mentally I am feeling brighter and more able to cope with things. However, it has got humid over the last couple of days and that is affecting me. I feel tired and lethargic.

My initial thoughts are that dry weather is better for me than wet, unless it is clearing the air rain, and that pressure may be more influential than temperature. I’m going to try and track both for the next few months and see if there is evidence to support my thoughts.

CP I’m the same, I thrive in the sun. I’m a summer baby though and I’ve always loved the sun but my 18yrs with ms has shown me how good I am when it’s sunny and hot. My spasms, stiffness, pain, tremors… None of those are as bad as “normal” days. I have noticed that it has to be a dry heat though. If it’s humid and close it wipes me right out. I call it permanent bath syndrome as that’s what I feel like, except it lasts all day/night. Direct hot sun however and I’m dancing a happy sun dance… Well mibe no dancing… Mental happy sun dance instead :wink:

I think you’re onto something there Libertine… I think it’s the humidity more than the heat. Problem with UK is it gets so humid when it’s hot. When you think about it, the ‘hot bath’ test they used to use to dx MS is really about ‘wet heat’. Maybe we should all move to Spain. Pat xx

Pat, been there, done that, really do have the tee shirt…Spain gets really really humid…July and August are unbearable the humidity is off the scale in the south. When I first lived there I actually used to sunbath in the winter and hibernate in the summer! We came back to the UK for various reasons but the main one for me was my growing inability to cope with the heat. It actually got so bad that the year we came back to live here I came back three months before my husband and my dogs! Hope London is better today for you! Nina x

Nina, my sister who lives in Italy says same. Unbearable in summer… she always comes back here for the summer. She says it’s absoulte hell. Oh well, I guess I’ll stay in Blighty (as if I have a choice lol). London MUCH cooler today thank you. Quite pleasant. Pat xx

Went to Las Vegas once, in my former life…the heat there was so incredibly intense but very very dry…not nice…like a hair dryer blasting at you full pelt! We may have rain and humidity but you can’t beat Blighty…its home ! Nina x

There’s nowhere quite like home, reminds me of a song!

In years gone by we did visit quite a bit of Europe, and I always found the heat unbearable, the Spanish have got it right, everything shuts down in the afternoon and reopens early evening, after their siesta.

Sounds like a plan to me!

Have a good day everyone, take care and stay cool.

Pam x