For me heat brings relief from symptoms... is this odd?

Hi,

Was unsure weather to post in ‘before diagnosis’ forum or this one, but figure this is probably more of an ‘everyday living’ thing, so here goes!..

firstly, a wee bit of background: I’ve not been not diagnosed with MS but am being assessed… I know you guys can’t give me any answers about diagnosis, but I did want to know if anyone else experiences this?

I’ve been reading a lot of posts about how heat can makes symptoms worse for a lot of people. I did feel really grim in the very hot weather, and a few times I’ve had funny spells after a bath. BUT… and this is the bit I find odd - when the tingly pain hits my feet really badly, the only thing that really helps is sticking them in a bowl of hot water. I’m not sure if it actually eases the pain or just changes the sensation from pain to heat, but either way, it brings relief. My big soft fluffy boot-slippers are the only things that make walking round the house bareable when the pain is bad. I have also found that wrapping my wooly scarf quite securely around my kneck helps the pain there, and when I’m having a really bad time, a hot water bottle seems to dull/deminish the tingly sensations in my legs. I’ve been wondering a lot about this because (a) it’s summer!! and (b) I keep reading how heat can make symptoms temporarily worse… but for me (in controlled doses) it brings temporary relief / comfort.

Also, I think the times when I’ve struggled most with the pain have been when the weather is very cold (like last winter, waiting for buses :/).

Is this odd? Does anyone else have similar experiences? xx

Hi,

I think “we” are in the monority, but no, it’s not odd.

I hate cold, and crave warmth. It’s noticeably cooler today, and I am cramping like mad. I don’t usually need another baclofen 'til teatime. I’ve just taken one at half-past-two. I think it’s because I’m cold - also did not dress properly for today’s weather, because yesterday was so warm. Couldn’t be bothered to change.

When everyone else posting about cooling pillows, and cool showers instead of hot baths, I’m always thinking: “Brrrrr, no thank you!” I hope I’ll still be able to enjoy my hot baths for many years to come, as I’d really miss them if I couldn’t. A “refreshing” shower holds no charms for me at all. I’m constantly seeking comfort, not refreshment.

I have to say, though, that most of my pain is achy/crampy, not neuropathic. I think you instinctively know what you want to do about it. I find that if a pain is quite cold already (i.e. an ache), the last thing I want is to apply cold, or get cold.

I use hot baths, hot compresses, and hot water bottles quite a lot. In fact, I used my hot water bottle so much, it sprang a leak. Must remember to get a new one, before Autumn really starts. I also have an all-purpose “house-blanket”, made of snuggly fleece, that goes on me, not the bed.

Tina

x

Flippin’ typing - minority.

Why does my browser spellcheck work everywhere but here?

Ahh… interesting to know I’m not the only one, even if we are in the minority! I have a blanket too… it lives on my sofa, even in summer :slight_smile: My mam keeps trying to give me microwaveable wheat-filled heat packs, but I prefer old fashioned water bottles! And I have been eyeing up fancy-pants electric foot warmers, they look bloomin’ amazing! xx stay snug!

Interesting, I thought I was the odd one out, but clearly I’m not. My symptoms always seem worse when I’m cold & I often feel ‘better’ when I’m in a hot country (that could be because I’m on holiday though!) I dread winter. Keep warm :smiley:

Somebody recently linked to this useful factsheet (from elsewhere on this site) about the effects of temperature on MS:

http://www.mssociety.org.uk/ms-resources/hot-and-cold-effects-of-temperature-on-ms-factsheet

Interestingly, the earlier version of the same factsheet (which I just stumbled on accidentally, whilst trying to find the right one) completeley ignores the effects of cold. So it’s good to see it finally acknowledged as a problem for some folks with MS.

It also makes the point that not everyone is heat-sensitive.

That’s one of the odd things about MS. Hardly anything’s the same for everyone.

I really struggle standing for buses in Winter, too (although 30 degrees wasn’t good either). And yes, my blanket lives on the sofa all-year-round, as well, just in case I might need to snuggle up in it. My mum bought me some bedsocks, and I was delighted! How many women under pension age would be really pleased with bedsocks?

Tina

x

I’ve always had very bad circulation issues, I used to freak my mother out by turning blue when out in the cold.

And it was only after being diagnosed with MS that I’ve been told in a startlingly offhand manner by a nurse about my toes turning grey regularly “Oh that’s just your Raynauds” Sorry? What?

Now I’m not saying that what you have is Raynauds! I do and there are startling similarities between MS and Raynauds, tingling and loss of sensation anyone?

And quoting from wonderful wikipedia:

“Secondary Raynaud’s (syndrome): Raynaud’s syndrome, or “Secondary Raynaud’s,” occurs secondary to a wide variety of other conditions. Secondary Raynaud’s has a number of associations:”

Including… surprise surprise… MS

Now Raynauds is a bit of an extreme circulation issue exacerbated by cold. You basically have to keep your extremities warm if they’re a touch cold and showing symptoms. Like for instance sticking your feet in a bowl of water.

For me this all ties together and makes sense, especially a later wiki sentance:

“It is important to realize that Raynaud’s can herald these diseases by periods of more than twenty years in some cases, making it effectively their first presenting symptom.”

Just throwing in my tuppence, all I know is my MS gets worse in the heat, my Raynauds gets worse in the cold. :slight_smile: