Living with multiple sclerosis

Katy Perry sang, “you’re hot and you’re cold; you’re yes then you’re no; you’re in then you’re out; you’re up then you’re down.” Sound familiar?

It’s that time of year – full-blown winter in the Northern hemisphere, where everyone’s all wrapped up warm and hugging a big mug of tea, while on the other side of the globe everyone’s chilling out at the pool and enjoying life on the beach.
Wherever you are, there’s a good chance you’re experiencing temperature extremes right now, moving quickly from snow and ice outside to overheated rooms inside, or from sunshine and heat outside to seriously chilly air-conditioned homes and offices.
These kinds of temperature changes are challenging for everyone, but for people living with multiple sclerosis, what feels like the daily trip between the Sahara and Siberia can be a real problem.
 
Dealing with the Heat Wave

It is widely known that heat can affect people living with MS and worsen their symptoms. In fact, a recent study from 2011 showed that over half of people living with MS were reported to be heat sensitive. Even a very slight increase in core body temperature (only 0.25 to 0.5°C) can be enough to cause difficulties with balance, weakness, fatigue or changes in vision in some people.
Although experiencing symptoms, such as blurred vision due to overheating, is definitely something to avoid, the good news is that this will likely only be temporary and your body will recover as you cool down. These so-called pseudo-exacerbations will usually not cause additional nerve damage.
 
Brrrr…Winter Chills

Colder temperatures can also be a problem for people living with MS, although it’s less common. An epidemiological study conducted in France, found that 147 out of 191 people with MS (77%) reported heat sensitivity, while 20 (10%) reported a deterioration when cold. Nineteen people even experienced improvement of their symptoms in heat.

Winter weather can cause a dual response, meaning it can temporarily improve one symptom while at the same time worsening another. In the winter, people living with MS might experience sensory symptoms or mobility issues. In addition to spasticity and rigidity, cold temperatures and winter weather can also lead to increased fatigue and depression, although these could also be the result of tiring mobility issues or may be related to the lack of daylight available.

Some people with MS also have Raynaud’s syndrome, a condition where strongly reduced blood flow in fingers and toes and can lead to discoloration, pain and numbness in response to cold. And others might experience the ‘MS hug’. That’s a tightening feeling around the chest and abdomen which is caused by spasms of the small muscles between the ribs, a sensation which can range from annoying to painful.
As is the case for those who struggle with the heat, the symptoms caused or enhanced by the cold will fade away when your body gets back to its ideal temperature. Although cold sensitivity is less well known and less talked about, if you do suffer from worsened multiple sclerosis symptoms due to low temperatures, you are not alone.
So what to do?

Of course, we all try to keep ourselves at a comfortable temperature. If the summer heat causes your MS to flare up, you can take measures to keep your body cool. These might include simple things like drinking cold liquids, taking cool baths (but take it easy by slowly decreasing the temperature) or staying in air-conditioned rooms (reasonably cooled down without creating an Arctic winter!) when possible.
In addition there are more sophisticated solutions on the market like passive or active cooling garments. Although heat-sensitive people should avoid overheating, don’t take this as an excuse to stay on the couch the whole summer! Heat-sensitive people can still exercise – in the pool this could include swimming, water aerobics or even aqua cycling.

At the other end of the spectrum, people experiencing multiple sclerosis symptoms brought on by the cold need to take care in winter. If the cold is an issue for you, have frequent hot meals and drinks, and dress appropriately, ideally like an onion: combine several layers to enable you to maintain an ideal temperature, even when you step into an overheated room.

The trick is not to overdo it either way. Don’t turn your home into a sauna or soak yourself in an ice bath. And never leave ice packs or heating pads directly on the skin, as MS can change the way a person experiences hot or cold. You don’t want to end up with blisters from cuddling your hot-water bottle. All that being said: keep warm and stay cool!
                         
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