Cerebral Palsy and Chronic Pain: The Best, Worst Duo

According to a study published last year, chronic pain affects one-third to half of the UK populace. Of those people studied, 38% of them said they experience pain once a day. A further 16% say they are in constant pain. I’m one of the 16%, and I consider myself lucky if I go one day without pain.

Cerebral Palsy and pain go hand-in-hand. My body is constantly fighting against itself so that I can stay stood up. I suffer from permanent muscle tightness, which I class as discomfort rather than pain. Back pain can also be an issue, just because of the way I walk. I also get joint pain in both my ankles, and then, on occasion, my knee will decide to misalign just enough that I can’t stand up anymore.

I like to joke that the only consistent thing about my body is the inconsistency. I never know how my body is going to react. Of course, there are patterns; for example, if I work three days in a row, I know my first day off will consist of physical self-care. However, every time I think I have the pattern figured out, a new combination of pain will come and knock me out.

I didn’t suffer from any pain as a child. Not that I can remember, at least. My first long-term experience with it came after I had surgery to realign and adjust my lower body. My hips were moved, both of my outer thighs were broken and pinned, and I had arches created for my feet by having part of my hip bone placed in each foot. As horrific as that probably sounds, it’s common for this kind of surgery to be performed on children with cerebral palsy. It aims to increase our movement and overall quality of life, all before our final growth spurt.

After I came off the morphine and was relearning to walk, I noticed a severe tightness in my left ankle but put it down to physical strain. It was only after I brought it up with my surgeon months later that I discovered somebody had cut my ligaments, just a little bit too short.

The movement in my feet had always been limited, but now even more so. I can move my left foot up and down by a couple of degrees, but that’s it. This means if I trip, fall or roll my ankle, I’m in agony.

I’ve also come to realise that my scale for pain is entirely off-kilter. Of course, pain is subjective, but in my experience, my pain tolerance is much higher than my peers, simply because I’m so used to pain. I’ve noticed that this is only true about areas of my body that are affected by my disability. If something hurts from the waist up, it’s like my body doesn’t know how to process the information, so I’m left in crippling pain, even if I’ve just pulled a muscle in my arm.

Even though I have a complicated relationship with pain, I have my pain management techniques to try and limit the impact pain has on my life. I spend so much time planning my week, tracking my energy levels, and listening to my body, even if I don’t want to sometimes.

Full disclaimer, none of this is actual medical advice. It’s just what I’ve found works for me. Please consult a doctor before trying a new form of pain management like medication, supports or anything else on this list. That being said, here are some of the things I have in my arsenal to help with pain management.

Treating the physical pain

I use so many things to help me deal with my physical pain, and I generally place them in two groups. There are pain killers and pain preventers.

I use my pain killers to stop and or deal with acute pain that I’m already having. This list includes actual pain medications of varying strengths. Though they’re my last resort, I never leave home without them. Cold and hot pain sprays are good too, I’ll always try these before pain killers. I’ve found that ankle supports and braces are suitable, they’re not meant for long term relief, but they’re great for buying me enough time to get home safely because they compress my ankle so I can weight-bear.

I also like using a mini tens machine. It looks like a pen, and it works by sending electric shocks to other parts of my body, which distracts me from my acute pain. It’s crazy that causing more short-term pain relieves acute pain, but in my experience, it works. The last one bridges the gap between pain killers and preventers. It’s a foot massager that my husband bought me years ago. It’s great for muscle stimulation, its impact on my pain level varies, but it’s always great for alleviating muscle tightness.

My pain preventers are designed to realign and adjust my body, to give me an optimal range of movement, even if it’s for a couple of days. These include attending chiropractic and acupuncture sessions. The results always vary but having relief, even for a little bit, is worth it.

One piece of advice I’ve been given a lot is to exercise if you have chronic pain because it stops you from seizing up. So, I go swimming as much as I can. It’s low impact, and I have a great range of motion in the water. During a swim session, I’ll strap weights to my ankles for extra resistance. Being in the water is just great because it relaxes my muscles.

I always take loads of baths, especially if I don’t have the energy to swim. It doesn’t have the benefit of exercise, but I can still relax my muscles. I always dread getting my water bill.

How I treat my mental exhaustion

Something I think gets forgotten about is the mental drain chronic pain causes. It’s a significant contributor for when I have a mental health dip. I’ll admit, this is still relatively new to me because I only started practising it post the first lockdown.

I took the time to read ‘Spoon Theory’ by Christine Miserandino. Whilst I don’t follow it as rigidly as I probably should, I always listen to my body and take the time to figure out how much energy I have and how much I’m likely to spend over the coming days.

I often talk to my therapist about my physical well-being. She’s not a doctor, but it’s a great way to talk about and monitor my mental state and, after a while, I was able to figure out when I was likely to get a dip because of pain fatigue.

The last one might seem a bit cliché, but I have a meditation app. I should start meditation, but I use it to fall asleep listening to rain sounds. It helps me sleep, and more than that, it helps me feel rested. When it comes to chronic pain, sometimes it’s the little things that make the difference.