Last reply 1 week ago

I’ve had RRMS for 4 years and I’ve had 2 rounds of Lemtrada.
For years I’ve suffered with extreme sweating and after Lemtrada it’s gotten worse!
I literally can’t leave the house as I’ve only got to move and The sweat is pouring off me. I take small electric fans everywhere with me and I have a fan on at home 24/7! I actually feel hot all the time as well. I’ve mentioned it to my doctor and ms nurse and they don’t seem to think anything of it. I’m taking sage tablets as that’s meant to help but nope!
It’s ruining my life! I can’t even go places with friends anymore! Does anyone else sweat like this?

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10 months ago

That sucks Dani I feel for you

10 months ago

I actually have the opposite problem… I used to sweat super bad no matter what and right around the time I was diagnosed it stopped. I barely sweat now, but I have heard from other people with MS in general that now they sweat more. I’m really sorry you’re dealing with this. Have you tried asking your primary care about it to see if they take you more seriously?

I’m going to mention it again to my ms nurse when I see her next and tell her how much it’s effecting me and my life
I’ve given up going out now!

10 months ago

MS is just a lousy disease.

Your problem with sweating does not necessarily have to be a result of the medication. You may have a lesion in your spinal cord. They often affect the autonomic nervous system.

I suffer from the opposite. I have not been sweating at all for years. As soon as the sun shines, I overheat and get tired. If I’m not careful, I get a fever. For me it is a consequence of the lesions, because I do not take any medication. And I was told by the doctors that excessive sweating in MS is much more common than not sweating at all.

When I researched what I can do to make myself sweat again, I noticed that there is no information about it but for the opposite. Many people with pathological sweating are treated with Botox.

10 months ago

I sweat really badly too, always have done but it’s got worse in recent years. Just a 5 minute walk can set if off these days or even when I get nervous or anxious can make it pour down my face which can be really embarrassing. Summer is my worst nightmare, I can get through 2 or 3 t shirts a day as the sweating is relentless although even in winter it’s still a massive problem, I can be shivering with cold and yet still be pouring with sweat.

And like you, I’ve found that any medical professionals I mention it too don’t seem to acknowledge it as much of a problem, I’ve brought it up many times and I generally just get a shrug of the shoulders, I don’t think there’s much they can do about it unfortunately. There are a couple of products which do help, Driclor for body and Odaban for head, they sting a bit when you apply them but they really do help reduce the sweating, they’re the only things I’ve been able to find that make a difference unfortunately.

@arbee thank you for those products I’ll give them a try!
It’s awful isn’t it! I can’t even meet friends in town as I can’t go in the shops as the heat of the shop just starts me off.
It can be 10 degrees outside and I’ve got short sleeves on and sweating while everyone else has big coats on!

@daniel123 it sounds awful having it the other way around also! I’m hot all the time, it can be7 degrees and I’m in a t-shirt.
Hate how it can take over your life!

10 months ago

@danielle_rogers-atkinson Ugh the worst! I use to think it was because my dad sweats like crazy and he passed it on to me lol Then I noticed I would always feel hot even in the winter. I wouldn’t even have a winter jacket because I would just feel so hot in it, my friends thought I was crazy! After being diagnosed, it all made sense – definitely heat sensitive. I would recommend Certain Dri, it is a two step process deodorant but works very well. 🙂

@rel12 it’s odd coz you’d think it would be more my armpits and stuff that I’d be worried about but the worst area is my head. My hair gets soaking wet and it pours off my face! With my body it’s more under my bloobs. Whe I sit down and then get up I get the lovely sweat mark across my top. Drives me nuts!!

10 months ago

@danielle_rogers-atkinson Oh no! I could only imagine how uncomfortable that must be. I would definitely try reaching out to your primary doctor + getting a second opinion. Maybe they can recommend someone to talk to about that. It can also be the different temperatures depending on where you live & if you have any temp. sensitivities.

@danielle_rogers-atkinson Hi Danielle I was just wondering if you spoke with a consultant about the sweating? I feel like I’m crying to the moon because I don’t think people appreciate how debilitating this none stop sweating is. As a youngster up until I was 50 years old I suffered friends m excessive sweating in my hands and feet. But now it’s all over my body. It makes me feel so ground down and worn out. If you have found a ‘cure’ could you tell me what it is please? Thank you for reading xx maddie x

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