Here Comes the Sun
And I say… I feel f..ked. MS and the heat intolerance beast
Cycling in beautiful Ile de Ré in summer heat during the year leading up to my diagnosis, something wasn’t quite right.
Coming back from the beach, we’d been pedalling for less than about five minutes when I began to feel unwell. Overcome with fatigue, nausea and a weird thick head sensation, I had to get off. We sat on a bench under the shield of a shady tree. I slumped forwards, holding my head in my hands in a sort of self made recovery position, wondering how I was going to get back to the holiday house. What I now know was that this reaction was likely to have been the impact of my soon to be detected MS, as my body dealt with an increase in temperature.
But when I received my diagnosis, I wasn’t told that temperature sensitivity was a pretty common MS symptom. I found out by doing my own research.
In the course of this research I came across some interesting reading. And I don’t want to spoil your school’s out for summer vibe, but here’s a little bit of history…
Up to the early 1980s the "hot bath test" was used in the diagnosis of MS until it was replaced by other diagnostic tests such as MRI.
The hot bath test involved getting the patient to lie in a bath of hot water “of a temperature from 41.1 to 43.3°C for 10 to 15 minutes”. If this caused or worsened neurological symptoms, it was taken as evidence that the person had multiple sclerosis. (1,2.)
In my previous post I wrote about the ordeal of my first MRI scan but since recently finding out about this MS test of yore, I think that an hour and a half in a noisy claustrophobic tube, particularly since I’m a pro with it now, would be preferable to being dunked in a vat of hot water. I mean, would you be clothed? Would you have to get changed into a swimming costume? And don’t even get me started on how I’d get into the bath in the first place, or out of it and changed again after the onslaught of the heat.
Now how about some statistics, and even more history…
Between 60 and 80 per cent of people with MS find that heat causes their symptoms to worsen. Even a very small increase in temperature can cause fatigue, blurred vision, loss of balance or exacerbation of problems with cognitive function. (MS Trust).
I think I’ve established I’m one of them.
This strange little beast, probably largely unknown outside the world of people with MS and those close to them has a name – Uhthoff’s Phenomenon. Named after Professor Wilhelm Uhthoff, a German neuro-ophthalmologist working with MS patients who first described it 1890. When he carried out his observations (although there seems to be some inconsistency in the sources), it seems that exercise was thought to be the cause. It was only later that the significance of elevation in body temperature was found to be the culprit, and the hot bath test developed from his findings in 1950. (1,2).
Back in France, maybe the cycling itself pushed my temperature up even further. But these days once I see summer temperatures teetering above around 23 degrees, I pray to the gods of Wincey Willis {insert your favourite TV weather presenter or meteorological deity} that that’s as high as it’ll go. Bring me iced water, my fan, my cooling towel and a Biscoff ice cream stick and if I sit under the parasol I’ll have a chance of being able to enjoy 23 degrees. But my legs, ankles and back will be stiffer and I’ll be hobbling even more than usual. I have become a delicate being seeking only the optimum amount of sun to process the vitamin D that I need.
This summer Wincey answered my prayers and so far temperatures have remained fairly steady, even if a little chilly, with no real heatwave in my neck of the woods. But Uhthoff’s affects me in other ways. Of course the nice hot bath after a long day is no more, and I must be careful I don’t overheat when I exercise. That’s not too difficult with how exercise looks for me these days. I’ll still come with you for a spa weekend, but I’ll be sticking with lying on a lounger, massage treatments, and maybe the pool if it’s cool enough. I will not be joining you in the sauna, steam room, jacuzzi or hot tub.
At the other end of the scale, cold sensitivity, although less common, is something that can also be an issue for folks with MS. In winter and autumn I can really struggle to get warm, and my feet are transformed from the boiled gammons of summer, to frozen blocks of ice in bed at night. Like they’ve been visited by some nocturnal frost wielding baddie sent to keep me awake if I don’t take the precaution of a hot water bottle and cosy socks.
So why does temperature sensitivity happen in MS?
I’ll end with a snippet of science…
“Temperature sensitivity could be caused a number of ways. Extremes of heat and cold may affect the speed at which nerve impulses can travel along your nerves, particularly where there has been demyelination or nerve damage. Alternatively, MS may have caused a lesion in the part of the brain that controls or responds to body temperature. Your brain may not trigger sweating or shivering responses that keep your body at the best temperature for comfort.” (MS Trust).
The good news is, that although it’s a massive ball-ache, the effects of heat (and cold) are temporary and do not cause any permanent damage. Symptoms generally reverse when your body temperature returns to normal, and can largely be managed through careful planning and deployment of some useful tools.
🍦Including ice cream.
Questions for MSers. Sorry it really is a bit like a school assignment now, but i’m interested!
🥵Do you struggle with temperature sensitivity and how does it affect you?🥶
🍧If yes, what strategies do you use to help, and do you have any tips?🧦
🧑🏼⚕️Were you forewarned by a health professional that temperature sensitivity might be an issue, or like me did you do your own research?👨🏻💻
🏥What would you prefer, MRI or Hot Bath Test?🛀🏻
Let me know in the comments.
Thank you to the MS Trust for providing background references:
1. Opara JA, Brola W, Wylegala AA, Wylegala E. Uhthoff`s phenomenon 125 years later - what do we know today? J Med Life. 2016 Jan-Mar;9(1):101-105.
2. Panginikkod S, Rayi A, Rocha Cabrero F, et al. Uhthoff Phenomenon. [Updated 2022 Oct 24]. In: StatPearls [Internet].
3. T. Jock Murray. Multiple Sclerosis: the history of a disease. 2005.
Thank you for reading
Jane 💛
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Your post has me think how with climate change is, many countries are having longer summers than usual, mine included (where temperatures can get as high as 50C but usually would hover in 30s to 40s in summer and can get as low as 12C in our "winter" but nowadays would hover in the mid-20s). Your post is also having me think how environmentalism is not centering the experiences of disabled and chronically ill people who are directly impacted.
Once again your article is very illuminating on MS in general , but particularly enlightening on the effect of level of heat upon those suffering its attack, and the value of doing one's own research into different aspects of that affliction. A Headingley garden certainly seems a much better environment than Mediterranean or Tropical regions ; the latter can be especially enervating even for those who regularly frequent such solar abundant areas - twenty degrees above Northern UK summer temperatures for example ........ Having personally undergone MRI scans I can understand your feelings about the peculiarity and discomfort of their environment. Cold feet too - in UK winter time bedrooms ! Bernard