Managing Pain With Cerebral Palsy

Managing Pain with Cerebral Palsy: What Has Helped Me

By Jessica Grono

One of the biggest misconceptions about cerebral palsy is that it’s simply a movement disorder.

What many people don’t realize is that cerebral palsy can also be painful.

Pain has been part of my life for as long as I can remember. Some days it’s just a dull ache. Other days it affects almost everything I do. As I’ve gotten older, I’ve learned that managing pain is just as important as managing my mobility.

I live with osteoarthritis in addition to cerebral palsy, so I often feel pain in my hips, knees, neck, and joints. Some days I joke that I can predict when it’s going to rain because my body lets me know before the weather forecast does!

One thing I’ve learned is that with cerebral palsy, pain rarely stays in one place.

If my knee hurts, my muscles tighten. If my neck is sore, my involuntary movements become worse. Even something as small as stubbing my toe can make my entire body feel tighter and less cooperative. It’s amazing how one small change can affect everything else.

Why Does Cerebral Palsy Cause Pain?

Pain can happen for many different reasons.

Muscles that are constantly tight or moving involuntarily become tired and overworked. Over time, that extra stress can affect our joints, tendons, and bones.

Some common causes of pain include:

• Muscle tightness and spasticity
• Involuntary movements (dystonia or athetoid movements)
• Arthritis and joint wear
• Poor positioning while sitting or standing
• Muscle fatigue
• Digestive issues such as GERD or constipation
• Recovery from surgeries or medical procedures

For me, GERD has also been a challenge since I was 17 years old. If I forget my medication, I’m reminded very quickly how uncomfortable it can be.

What Helps Me Manage Pain

Everyone’s body is different, but these are some of the things that help me.

Keep Moving

Ironically, movement usually helps more than staying still.

Gentle exercise keeps my muscles from becoming even tighter. On the days I don’t move enough, I usually pay for it later with more stiffness and discomfort.

Listen to Your Body

I’ve learned there is a difference between pushing myself and ignoring my body.

Some days I need to slow down. Other days I can accomplish much more. Learning those differences has helped me avoid making my pain worse.

Medication

I use a combination of collagen powder, Tylenol, Advil, and my prescribed medications when needed. While nothing completely removes the pain, these treatments help make it manageable.

Always talk with your healthcare provider before starting any medication or supplement.

Accept Help

This one is probably the hardest for me.

I like being independent, sometimes to a fault. Asking for help getting into bed or transferring in the bathroom isn’t easy for me. If I’m honest, I’m pretty stubborn.

But I’ve learned that accepting help isn’t giving up.

Sometimes asking for assistance prevents more pain tomorrow.

That’s something I’m still working on.

Pain Is Different for Everyone

No two people with cerebral palsy experience pain exactly the same way.

Some have frequent muscle spasms. Others struggle more with arthritis or joint pain. Some experience very little pain at all.

Your experience is valid.

Don’t compare your pain to someone else’s.

Instead, pay attention to what your body is telling you. The better you understand your own pain, the better you can work with your doctors, therapists, and caregivers to manage it.

You’re Not Complaining—You’re Caring for Yourself

For many years, I thought I simply had to push through the pain.

Now I know better.

Managing pain isn’t weakness.

It’s part of taking care of yourself.

Living with cerebral palsy already requires our bodies to work harder than most people realize. There’s nothing wrong with using the tools available to make life a little easier.

If you’re living with cerebral palsy—or you’re caring for someone who is—I hope you remember this:

You don’t have to pretend you’re okay all the time.

Listen to your body.

Ask for help when you need it.

Celebrate the good days.

And give yourself grace on the hard ones.

Pain may be part of cerebral palsy for many of us, but it doesn’t have to define our lives.