I’m talking about Uhthoff’s syndrome
The mercury in the thermometer will creep up over the summer. Some days it creeps higher than other days. Whilst it remains below 20 I am more than happy, 21 or 22 and I need to be careful. If it gets over 23 then I can only venture out occasionally. I’m talking about Uhthoff’s syndrome. Its when your body overheats.
In the winter I always have cold feet and have to wear more clothes than other people. In the summer when the sun is shining I must be extra careful. I have learnt the hard way what can cause Uhthoff’s syndrome. It’s not just sitting in the sun, sitting in front of a fire in the winter can also have the same effect.
I can live with my MS
It never gets better, just very slowly deteriorates. At least I know where I stand ( ha ha). Now it takes so much longer to do anything but I can live with that. Difficulty in walking has crept up on me bit by bit. In 2004 I had to stop taking the dogs for walks across rough land and it has gone down hill from there. Fatigue has only affected me since I took medical retirement in 2012.
I’m talking about Uhthoff’s syndrome
I can tell it’s starting when my forehead feels hot. Also my legs won’t function properly. This is a totally different from MS. It just suddenly swoops down, hits me and knocks me out until I’ve had a good night sleep. Even the next morning I can still feel pretty groggy.
At its worst
I am completely paralysed from the waist down. Luckily this only happened to me once. It was a winter’s day and I was staying with some friends and I got quite cold. They lit a blazing log fire and plonked me in front of it.
Supper was on the table but I couldn’t stand up. My legs just would not work. I then felt my forehead, uh oh, I knew it had got it. The ultimate indignity I was carried up to bed, undressed and left to sleep it off. Next morning I ate a hearty breakfast.
So I’m a classic case for Uhthoff’s syndrome. My MS has totally clobbered the ability to regulate my body temperature. When I’m too hot no messages can pass down the nerves to my legs. This is a bit inconvenient but I’m completely knocked out and feeling rubbish that is so hard to live with. The only solution is to retire to bed and sleep it off.
Various possible solutions
A cold shower or putting a wet flannel over my head will cool me down but I still cannot concentrate. I have tried taking a couple of paracetamol to reduce my temperature but that doesn’t really work either.
The worst thing
The rest of the day is a complete write-off. The only real solution is to go into a cool darkened room and sleep it off. People are always amazed at how I bounce back the next day, bright and breezy as if nothing has happened. I wish my MS would let me bounce back to normal.
The FES really changed my life
You’ve been diagnosed with multiple sclerosis
This is a helpful article. I have progressive multiple sclerosis. My walking is changing but I just keep moving. I read the comments. Yes, be bloody-minded and push yourself. I go for long walks with my Volaris Smart Patrol Rollator which has ten-inch wheels and is good for outdoors. Then I pay for it the next day but it’s worth it.
Your description of Uhthoff’s phenomenon is very clear and I’ve shared it with my MS Buddies.
Breaking the disease up into separate challenges just makes life much easier for me. The Volaris looks a very good rollator, just looked it up, l like the super big wheels. I use a Topro Olympus with 8 1/2 inch wheels. The wheel size makes a huge difference. I can only walk a shorter distance but do it every day. My daily limit is 8 aisles of the local supermarket using a trolley as a walker.
Uhthoff’s phenomenon takes a while to get your head around. not only must I avoid the heat but I suffer in the cold. Obviously not walking makes it worse. The effects of MS make it a very strange disease
I can agree “My MS has totally clobbered the ability to regulate my body temperature.” I say my thermostat doesn’t work as I freeze when others are hot and melt when they’re comfortable.
Yup it is a real bugger. When I’m out of bed my feet, especially my toes are always cold. I always wear an extra layer during the day but I can get too hot if the heating is see too high or I am in the sunshine. If I get too hot then I collapse. Its such a delicate path to tread
how’s your walking ability around the house, mine has deteriorated a lot in the last few weeks, need to mainly use my wheelchair – what’s next? When I can’t use my legs at all – what happens? Not sure but it’s becoming a possibility!
I cannot walk unaided. Using my rollator I can walk around the house or supermarket but it has to be flat, level and smooth. The physio at the local MS Therapy centre has been exceptionally useful, trying to get me to kick all my bad habits. I make sure I get outside to walk every day and also do jobs around the house. Everything takes so long. None the less things are definitely getting worse but it is very very slow.
I think you need to assume the worst but hope for the best. Find a physio who understands the limitations created by MS and also an OT. Also learn to be bloody minded. Advanced MS is a horrible waiting game but do try to look at what you can still do and keep hold of those