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Cerebral Palsy,  Disability

Cerebral Palsy and managing pain

31st January 2021 /

Experiencing pain when you have cerebral palsy (CP) is very common, especially in adulthood. I’ve always experienced pain in cold weather, with this becoming more generalised in my late teens.

Over the last few years I’ve tried various ways to control pain levels, all with varying degrees of success. However, it’s probably one of the main questions that I get asked. Developing a pain management strategy can take years of trial and error, with everyone responding differently.

Things that help me – stretching and physio 3x a week, swimming when I can, heat (hot water bottle or heat pack), lying flat on my back, baclofen, rest!

Carrie-Ann Lightley

Due to this, I asked the cerebral palsy community what they found helpful. I hope this helps to make things less painful!

In this blog post I’ll be talking about:

Disclaimer: I am not a medical professional. Any suggestions made in this blog post are based on my opinion. Please speak to a medical professional about the best way to manage your pain.

Splinting

Being assessed for orthotics can be really helpful if you are struggling with pain. As someone with CP, I’ve found that splints can reduce pain in the long-term.

I currently wear two fixed Ankle Foot Orthotic (AFO) splints. I’ve worn AFO’s on and off since I was 8 years old. However, I’m not in a rush to get rid of them this time around. Without splints I tend to walk on my toes with my knees facing inwards. As you can imagine, this doesn’t do my joints any favours! Not only do AFO’s reduce pain levels, they also have enabled me to walk a lot further and build up my strength.

Read more — Shoes and splints: A guide to find footwear for AFO’s

I take Baclofen when my spasticity is really bad, and although it hurts, wearing my resting splint does help.

Heather Lacey

If you have spasticity in your arm or hand, a resting hand splint can support your joints and increase function over time. Splints are not a magical cure, but persevering with them can lead to less pain long-term.

Medication, vitamins and creams

Stretches, long hot soak in the bath with epsom salts or anything high in magnesium. Vit D, B complex and magnesium supplements. Strength training at whatever level is safe and manageable for you.

Richard Luke

Taking medication can help to keep pain levels stable throughout the day. People with cerebral palsy can also benefit from muscle relaxants if they experience spasticity.

I find Epsom salts really helpful when put into a hot bath, as well as magnesium moisturisers. It can help to reduce aching muscles after a long day. I’ve used ALIVE magnesium moisturiser which really helped to relax my leg muscles.

Everyone will be different, but here are some of the suggestions I received:

  • muscle relaxants (Baclofen or Diazapan)
  • painkillers (naproxen, paracetamol or codeine)
  • epsom salt
  • magnesium (cream or vitamins)
  • pain relief cream (Tiger Balm or Deep Heat)

Treatments for cerebral palsy, including medication, can be found on the NHS website.

Cerebral Palsy: Treatment (NHS)

Stretches and physiotherapy

I try to change position every so often and also listen to my body when it’s telling me to get out of my wheelchair and lie down.

Faith Martin

Gentle stretches can be a great way to ease tight muscles and protect your mobility. If you are finding this difficult, doing them after a hot bath is always a good shout! Other people also mentioned the benefits of swimming.

Alternatively, you could have a look at some sitting exercises which can be done on a chair or wheelchair.

I feel better after going on the cross-trainer and do physio. Sometimes it’s the last thing I want to do if I am in pain but I feel much better off both physically and mentally.

Georgia Vine

Yoga can be great for stretches, as well as working on balance and strength. There are so many beginner videos on YouTube which are helpful, as well as apps. Also, there are some amazing wheelchair yoga videos from WheelPower that you should definitely have a look at!

Read more — Managing Pain During Lockdown

Exercising when you’re in pain can be stressful. It’s important to listen to your body and not overdo things. The Rest Room is a podcast that has discussed chronic pain and exercise. Despite being tailored towards chronic illnesses, they are so informative and can help you maintain movement.

Here are some of the episodes you might find helpful:

  • How to start exercising when everything hurts
  • What are your barriers to moving with chronic pain?
  • Understanding movement for chronic pain

The Rest Room — Natasha Lipman

Pacing

Also listening to my body is essential. I know I’m not gonna be able to work at a desk all day because my back starts hurting after a while so I make sure to lie on the floor or the bed for a bit halfway through the day.

Taking breaks (which I’m not very good at) is fundamental to prevent fatigue flare ups for me. Fatigue is the symptom that affects me the most and causes me the most pain, so I try to prevent flare ups.

Sofia Brizio

Pacing is a word I heard a lot when I started experiencing higher levels of pain, but what does it actually mean?

Pacing means you break tasks into smaller sections, allowing you to rest before you need to. By doing this, you might be able stabilise pain and fatigue in the long-term. Pacing is a bit like running a marathon, you aim to maintain a constant pace, rather than going too fast and then having to stop.

You might find that mobility aids allow you to conserve energy and pace yourself. When I was at university, if I knew I was going on a night out, I might use my wheelchair during the day. The aim of this was to save all my energy and minimise the physical impact of dancing the night away. Despite it still having a detrimental impact on fatigue and pain, using my wheelchair before (and often afterwards) would help. Even using a walking stick can mean you experience less pain, even if you can walk without one.

I think my biggest tip would be simply recognising when you’re in pain and honouring that (resting if you can). I until recently was terrible for being like “that’s just how my body is, things constantly hurt” when I was in pain and pushing through, but now I realise I need to honour when things hurt and not ignore it.

Emma Dobson

In contrast, not pacing is a bit like a sprint. You might have a short burst of energy and try to do everything all at once. Or you try and push through the pain in order to accomplish something or have a good time.

This often results in you experiencing payback a day or two later, leaving you with higher pain levels and fatigue. I certainly am guilty of this one! Sprinting is more commonly referred to as the boom and bust cycle.

Read more — Cerebral Palsy and energy levels

Despite the boom and bust cycle been seen as the wrong way of going things, it is inevitable. Sometimes we get it wrong and end up having a flare-up anyway. On the other hand, you might do something you enjoy despite knowing the negative impact that it will have. There is nothing wrong with doing that, it’s all about finding a balance that works for you.

Boom and Bust (Moving into Balance)

Heat

Heat is an absolute lifesaver for me. I have heated blankets, heat pads, microwavable bags, hot water bottles…you name it, I probably have it!

Heather Lacey

Heat is probably my favourite way to keep pain levels lower. I feel the cold really easily and it can take me so long to warm up again. Also, it is during cold and wet weather that I struggle with pain the most. Here are some of the ways you can keep warm:

  • heat pads
  • hot water bottles
  • thermal gloves
  • fluffy socks
  • electric blanket
  • bath or shower

Making sure my feet are warm is a big trigger for me, as my feet get very very cold and that affects my leg muscles/spasms. Particularly if I have exercised, but even if not, stretching helps as well, even just to prevent or relieve muscle pain a little.

Charlie Randell

The list is endless. Many people spoke about how cold feet impacted their pain. This is something I too experience, but I’d never put two and two together. Saying that, I own a lot of fluffy socks and have no regrets!

If you’re after things to keep you warm, Pippa wrote a great piece about Heat Holders and has a discount code to ensure you can save money and stay cosy.

Cold sensitivity and ME/CFS – keeping cosy and battling the elements (Life of Pippa)

TENS machine

A TENS (transcutaneous electrical nerve stimulation) machine is an easy way to get pain relief without the side effects of medication.

For people with CP, a TENS machine can be used to reduce muscle spasms. This is due to the electrical impulses reducing the number of pain signals that go to the spinal cord and brain. As a result, it can help to relax your muscles.

I use a TENS machine when my back and neck are particularly tighter than usual and Baclofen isn’t doing enough.

Jake Jones

I tend to use mine when I get into bed if it’s been a particularly painful day. For me, it reduces pain levels, relaxes my body and allows me to fall asleep more easily. It’s also portable and easy to use.

Using a TENS machine (NHS)

Cerebral Palsy can cause pain

You might have been told that you have growing pains, or that there is no reason for you to be in pain. Unfortunately, cerebral palsy can cause pain throughout your life.

When I hit 23 a consultant finally confirmed that, yes, cerebral palsy can cause pain and that my ‘growing pains’ absolutely were not growing pains at all!

Heather Lacey

One explaination for this is post-impairment syndrome. Due to the way you move if you have CP, it can cause extra strain on your joints and muscles. As a result, you might experience various symptoms that non-disabled people your age don’t have.

Post-Impairment Syndrome and Cerebral Palsy (Scope forum)

I found it really helpful to know the reasons why I was experiencing pain and fatigue, as this allowed me to build a pain management plan that worked for me.

With pain being a common symptom of cerebral palsy, I know that the things listed above won’t be a magical cure. However, I really hope they can allow you to get things under control and enjoy life.

~ Chloe x

Featuring:

Thank you to everyone who shared their experiences!

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