Heat sensitivity and MS - Multiple Sclerosis Breaking it down podcast

As temperatures start to soar in the UK we catch up with Dr Nikos Evangelou about how and why heat affects people with MS. We also share some of your thoughts and real life experiences of heat sensitivity as well as tips on how to deal with it.
Episode notes:
- Temperature Sensitivity - Information from the MS Trust: mstrust.org.uk/a-z/temperatur...
- Can't take the heat - article from the MS Trust: mstrust.org.uk/news/cant-take...
-Uhthoff's Phenomenon mstrust.org.uk/a-z/uhthoffs-p...
- How does cold weather affect MS? - Podcast from the MS Trust: mstrust.org.uk/resources/podc...
- Dr Nikos Evangelou's paper on Temperature sensitivity in multiple sclerosis: pubmed.ncbi.nlm.nih.gov/30377...
Next episode
Our next podcast will be on relationships and MS. This could be romantic relationships, family connections, or even friendships. We get a lot of questions relating to this topic, including what it's like to date with MS, how to talk to a partner or family member that doesn't understand the condition or even comments about fears that relationships with others will change after diagnosis. If you have an experience you'd like to share or a question to ask, we would love to hear from you. Your comment may even be featured on the episode! (it can remain totally anonymous if you wish) You can drop us a voice note or message via WhatsApp on 07458303326. Alternatively, you can email [e-mail].
WhatsApp messages aren’t monitored by our MS Helpline team so if you’ve got a question about life with MS that needs answering, please contact them directly on 0800 032 38 39 or email [e-mail].

[@esty6374]

The slightest degree change in my house brings it on. People think I’m being dramatic but they do have no clue how it feels

[@annamaria-ly6hx]

Thank you so much, as we are going to start geting more hot here in Australia. Very helpful. as a newly diagnosed MS woman.

[@profk8]

I have no idea what I have. I've been diagnosed with several autoimmune diseases, only to have the Dr's say they weren't correct. I definitely have pain and inflammatory arthritis, but the very worst symptom I have is this heat sensitivity. ANY physical activity makes me pour sweat like you wouldn't believe. I used to be very active, so this is a really frustrating problem. My husband and children do not understand. I'm basically bedridden in the summer because it is the only room with AC. When I do the simplest tasks like throwing a load of laundry in the washer, my internal furnace kicks on and the sweat begins dripping down my face. Prolonged tasks (light housework to typical folks) make me sweat through my shirts. My vision goes black and my head feels strangely heavy like I'm going to pass out. Lukewarm showers also make me sweat ferociously. Any humidity seems to draw more and more sweat from my body. It is so frustrating to take a shower, only to find it nearly impossible to dry off. My Dr's have done different cardiovascular tests and that's not the cause. I'm struggling with this issue more and more every year. It makes it impossible to go to any social events that don't have AC & even then, the tiniest bit of activity makes me completely exhausted. I really wish we could afford a swim spa because swimming is literally the only exercise I can imagine doing without passing out. No one has mentioned MS yet, but when I search for information on my various symptoms, these videos always pop up. Idk. The misery of heat sensitivity cannot be adequately put into words for those who don't suffer from it. My husband ALWAYS says, "What's wrong with you? It's not even hot outside." I really, really wish I knew. I'm ready to shave my head because even my hair makes me so hot I can't take it.

[@francislerma7571]

Can to much heat make a person faint

[@Robin-me8fe]

thanks

[@mybachhertzbaud3074]

For me, warm turns air into water and makes it difficult to move.
Cold raises the pain level to 11. Although the pain never really subsides in any temperature.😢

[@lorrainejohnson829]

Hi All ok i lîve in a very hot area of ga us. i cant go outside in summer and hot showers make me pass out! MS for 25 yrs- yuk!

[@francislerma7571]

Can the heat give mood swings
😮

[@mstrust]

Changes in temperature can temporarily cause previously quiet MS symptoms to become more of an issue, which might include mood and mood swings. When your temperature returns to normal, the MS symptoms should also start to go back to where they were. It may be worth making a note when you feel your mood becoming erratic and seeing if there is anything (such as heat) that might be triggering this. If so, trying to avoid those triggers (if possible) may help.

[@terahappygirl8355]

This happens to me. My vision goes black. Is this only caused by MS?

[@mstrust]

Thanks for your message. An episode of optic neuritis usually occurs in one eye only. It commonly causes blind spots or areas of poor vision surrounded by an area of normal vision. Colour vision can also be severely affected. You can read more about it here: pulse.ly/azljn1l4av
It might be worth getting your vision checked out by your local optician.

[@mstrust]

You can also read more about vision problems and MS here: mstrust.org.uk/a-z/visual-problems
If you are concerned it might be worth getting your vision and eyes checked out by your local optician and do mention this to them too so they can run some further checks and tests.
I do hope this information is helpful for you.
Take care, Corinne, MS Trust Enquiry Service
0800 032 3839 / [e-mail]

[@RobdeKlerk-qg6lc]

I don't sweat anymore...is that a common symptom ?

[@mstrust]

MS can certainly reduce the ability to sweat in some people. Research has considered if this might be a factor in heat sensitivity - the natural technique for cooling down is impaired causing fatigue and heat related symptoms when temperatures rise. Some Australian research on this at pulse.ly/tvfohzoovi
Other people with MS can report excessive sweating or night sweats.

[@RobdeKlerk-qg6lc]

@@mstrust Thank you very much..