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Avoiding heat

i’m very new to this, i have no knowledge of MS as yet, i need to start doing my research after being diagnosed today. partner managed to bring my appointment forward from April to today because of my symptoms and my results of my lumbar puncture had arrived.

i’ve been taking warm/hot showers and my symptoms have got worse. can hardly walk at all, left leg numb and cant use my left hand and arm, am typing with one hand.

i told the neurologist this and she said that heat can make flare up’s worse. she didint have time to explain any further because of other patients needed to be seen.

can somebody please explain this further to me or recommend a link where i can read more into information about things like these. the do’s and the don’t.'s.?

thank you.

I’m newly diagnosed and haven’t suffered from heat intolerance as of yet. But I didn’t want to read and run. From what I have read you are best avoiding extreme temperatures where possible. Sorry I can’t be more help. Xx

Hi Oceanblue,

Sorry to hear about your diagnosis.

One of the (few) consolations of MS is it doesn’t come with a huge list of dos and don’ts. Everybody’s different, so you just have to learn to interpret what your body’s telling you about what feels OK, and what doesn’t.

Even if you get it wrong sometimes, it’s unlikely you’ll be doing yourself any permanent harm. You may get an unpleasant but temporary worsening of symptoms, but these are not a sign you’re making the illness progress any faster. You just need to get used to what’s fine for you, and what isn’t, and the only way you find out is by trial and error.

Some people don’t get the heat thing at all; I never really have. However, if you know you’re affected, you just don’t have the bath/shower so hot, and you get used to what temperature works OK for you. As I say, if you misjudge it while you’re still experimenting, it’s not catastrophic - you won’t have caused irreparable harm. You’ll just learn the hard way that your body didn’t like that so very much, and perhaps not to do it the same way next time.

I think of it a bit like having flu’ - except, unfortunately, it’s flu’ that won’t go away. But just as with flu’, there’s no absolute ban on things you can do, but you probably won’t be able to cope with everything you normally would - the same with MS. It’s commonsense, rather than rigid rules.

As you get more used to it, you’ll know if your body is telling you it doesn’t like something. Even then, there might be valid times you choose to ignore it. For example, sometimes I do stuff I know is going to make me feel ropey later/tomorrow.

But if it’s important stuff I really want to do - like a special day out, or meeting a friend I haven’t seen for ages, I might decide feeling grotty afterwards is worth it, and deliberately keep the next day free, in case I need to stay in bed.

Does this help at all?

Don’t get too bogged down with rules!

Tina

x

thanks so much for your replies. xx

hi Oceanblue,

I’m also newly diagnosed and I have a very similar symptom. I always loved hot showers but now they trigger the rest of bad things that happen with me. All we can do is to avoid it.

xx

I am yet to be diagnosed, I dont have baths but I know that can hurt and cause symptoms to be worse hearing from other people on hear, I tend to shower but Warm water not really hot. Try to avoid baths and shower more might help, you can trial it to see what happens everyone is so different.