Cerebral palsy and winter: “Surely it wasn’t this bad last year…”

As the cold weather creeps up on us, pain levels start to rise. My muscles begin to contract and ache in a way that’s persistent and loud. I know I say it every year, but surely it wasn’t this bad last year.

You’d think after 25 years, I’d be used to the seasons controlling my body in a way that’s hard to comprehend. However, I have mild cerebral palsy and cold wet weather makes my symptoms worse. It’s equally true that warm dry weather elevates some of the pain and fatigue. It wasn’t until I was older that I realised it’s a common experience for people with cerebral palsy.

I know, we’re only in November, winter has barely begun. But that’s what scares me about this time of year. In a matter of weeks it feels like my muscles have changed. They are stiffer then I’m used to, with my left calf particularly feeling the strain. It might be my normal, but it always seems to catch me off guard.

The affects of cold weather

I think many disabled people can relate when I say that my body is going into hibernation mode. I’m sleeping more, needing to keep warm and take things at a slower pace.

Your limbs can feel more weighted and like you’re walking treacle. I vividly remember being in primary school and bringing a blanket with me when the colder weather started. People would argue about sitting next to me, so they too could share the warmth. I also had a purple heat up teddy that would go in the microwave to keep me warm. I knew I was the odd one out.

Why wasn’t anyone else so affected by the cold? How could people still run when it was cold? When I was younger, the pain was mainly in my legs. Yet it became more wide spread as a teenager. Keeping warm at school was still ‘a thing’. I’d wear tights under my trousers and a hot water bottle would be filled up by a staff member during break time. Not much has changed. Blankets and hot water bottles are still the way forward during the colder months.

This isn’t just to prevent me from getting cold, it’s to warm me up after being outside. I’ve always struggled to regulate my body temperature. Once I’m cold, it takes ages to become warm again. Maybe it’s down to bad circulation, but I do know many people with CP who are the same. I wear fluffy socks at home regardless of the season due to my feet always being cold!

Keeping warm can certainly help, but unfortunately that’s not the magic solution. Even if I’m out of the cold, I still feel higher pain levels.

The cold makes you tired?!

I appreciate that this might not make sense. Yet it’s more than being tired, it can be full blown fatigue.

Fatigue is being physically, mentally, emotionally and cognitively drained. It’s not been able to get your words out or think of what a word is. It’s sitting down and not being able to work out what you need to do next. The brain fog that clouds your concentration, with symptoms of CP all being heightened. 

Read more: Cerebral palsy and energy levels

I don’t know if the fatigue is partly down to my body having to work harder. With pain and tighter muscles comes increased concentration to do the simplest of tasks. Being in more pain can mean that your brain is always on alert. You have to think more carefully about every move you make and plan ahead.

What helps?

I’m not a medical professional, but here are some of the things that have helped me over the years:

• splinting
• medication, vitamins and creams
• stretches and physiotherapy
• pacing
• heat
• TENS machine

If you want to learn more about these, I have a whole post on cerebral palsy and managing pain.

Heat tends to be the first thing I try, but my cold related pain also responses well to a TENS machine and magnesium products. A hot bath with Epsom salts is a personal favourite. Yet everyone is different. Sometimes you need to try a few things to see what helps you. Unfortunately, there isn’t a magic cure. Pain is common symptom of cerebral palsy, with the cold affecting us further.

The reality of pain

I’ll be honest, it scares me. Especially as I start to get older.

People with cerebral palsy do experience premature physical ageing due to the way we move our bodies. With people normally becoming less mobile. After significantly improving my mobility over the last 5 years, I’m always worried that this winter decline might be the new normal. Many years of doing this have taught me it isn’t the case, but the fear is there.

I’m not guaranteed this mobility and it’s not something I take for granted.

I’ve seen how quickly it can crumble. How the vicious cycle of pain and fatigue can become consuming. Chronic pain is part of daily life for me, but winter is always tricky. You can do everything right, and it still somehow wins.

Keep warm everyone!

~ Chloe