Caitlin Ryan was diagnosed with juvenile rheumatoid arthritis, or JRA (now referred to as juvenile idiopathic arthritis), when she was 3 years old. In August 2009, at the age of 11, she underwent a full hip replacement surgery and will likely undergo another one, on her other hip, in 2010. Her case is severe. She has arthritis in every joint and has dealt with chronic, often excruciating pain for years.
“Before my surgery, it hurt so much,” Caitlin says. “You can feel your joints throbbing like you can feel your heart beat after you run. It feels like your joints are going to pop out.
“I’ve dealt with stuff like my joints hurting and everything hurting most of my life,” she continues. “Other people, their pain ends in a few weeks. Once you know that you have it and you can’t stop it, you just sort of have to live with it.”
Through the years, Caitlin has relied on medicine, a pain management team, acupuncture, herbal remedies and massage to deal with it all. But she and her family have also discovered some coping mechanisms of their own.
Caitlin hopes sharing these ideas will help other children battling chronic pain. “I think just calming down and relaxing helps a lot,” she says. “All these ideas, they were just what helped me. Everyone has different ideas that help them, but this is what worked for me.”
Caitlin’s Top 10 Pain Fighting Tips
1) Keep Moving. Swimming is a favorite. Being in the pool feels great, because I can get some exercise and it takes the pressure off my joints. Even just floating in the pool feels good. When you're in the water you aren’t touching anything and it feels a lot better.
I also love the Wii Fit. I love to do the yoga and strength training exercises. My therapist says it will improve your range of motion and your balance. It makes exercise fun and I can do it with my friends and family. This has really helped me strengthen my legs after my hip replacement – and you can do it no matter what the weather is like outside.
2) Get Distracted. I love to hang out with my friends and I love shopping. It keeps my mind off the pain. I like to cuddle up under a blanket with a good book. I love the Harry Potter series and the Twilight series. And watching TV can help me keep my mind off the pain. Mostly I watch funny movies. I love to laugh and it makes you feel better.
3) Rock Out. I love listening to music. I love Nick Jonas so I listen to his new band. And I like to listen to country and R&B and jazz. When I’m listening to Nick Jonas, his music is what I listen to at night. It’s what relaxes me. I’m also going to start guitar lessons. I think it will be cool and it’s probably good therapy for my hands and wrists. The only thing with music is, I just have to be careful that I don’t dance too much and too hard.
4) Stick With School. Sometimes my mom really has to force me to go to school when I’m stiff or in pain. In the morning I sometimes feel a lot of pain but my mom says it’s going to happen every day so you have to tough through it sometimes. But honestly, school helps distract me and then I’m not sitting home thinking about how much it hurts. I start to loosen up after a little while and just sitting in a class doesn’t usually hurt that much. If it really hurt in the morning, I’d just bring a pillow to school and sit on it.5) Do Things for Other People. This helps me get my mind off my own troubles. I like to speak at Arthritis Foundation events and I’m going to Washington, D.C. (to lobby Congress at the Arthritis Foundation Advocacy and Kids’ Summit). We recently started an Arthritis Walk where my grandma lives in Oregon and that’s raised a lot of money. And we organize a team for the walk at home. Raising money, it all goes to funding arthritis, no matter when you do it or where or how. So wherever you are, it makes a big difference. I think money will help people find a cure someday. I also really want to start doing some work at the local animal shelter.
6) Sleep. Getting a good night’s sleep is really important when you're dealing with chronic pain. When you're tired, your joints are sore and everything is sore, it takes up a lot of energy just to move. The pain seems worse and you don’t have any energy to do the things you like to do. So you need as much sleep as possible to be rested and not be grumpy. Plus, sleep helps you through the days to come. There are lots of things I do to help me sleep and deal with pain at night.
- I wear loose, comfortable PJs. Something that’s easy to get on and off, without buttons, snaps or zippers and something that won’t be too tight on sore joints. Every touch to the joint hurts when you are stiff, so you don’t want PJs to rub against the joint and have it hurt every second.
- I make a really comfortable bed area with soft blankets and different shaped pillows. I have a pillow that I keep between my knees to help my knees and hips, and a special neck pillow if my neck or upper back are sore.
- Sleepytime tea is warm and soothing and can help you sleep. I have also taken valerian root at the recommendation of my doctor and that helped me sleep when the pain was really bad.
7) Take a Nap. On the weekends, I try to get some extra rest, even if it only means laying down with a book – especially if I have big plans that involve staying up late, like a slumber party. It helps a lot if the past week was hard and you did stuff you don’t normally do. You can gain your sleep back and get rested to be able to deal with your joints the next week.
8) Heat Things Up. I have an electric heating pad, but mostly I use pads that you can heat up in the microwave. I have some with Velcro that I can strap around my waist or legs and even one to use over my eyes. I love being able to put them on while I go to school. People don’t know you're wearing them. Just put it on where it hurts and no one will notice.
9) Take a Bath. I like to take warm baths at night or in the morning if I’m having a hard time getting moving because of stiff joints. The water soothes and takes the pressure off – plus we have a Jacuzzi tub. When your hip hurts, having the jets is really good. I like to use soaps and bubbles that have nice smells that remind me of happy memories. Lavender smells like a spa and reminds me of my Nana’s house. Some of the “after rain” scents remind me of my Grandma’s house. And ones that smell like baby powder or vanilla make me happy, too.
10) Have a ‘Don’t Ask, I’ll Tell’ Policy. All my family is used to asking me, “Does your hip hurt today?” Or “Are your knees sore?” I know they only do it because they care. But the problem is, I might not have been thinking about the pain and once they mention it, it’s like – wham! Instant hurt and I’m focusing on it. So instead, they try to ask “Can I get you anything?” or something general like “How’s it going?” Then they trust that I’ll tell them if I’m in pain and need some help. Once they stopped asking, it didn’t bring it to my mind and I started not thinking about the pain.