Caitlin Ryan was diagnosed with juvenile rheumatoid arthritis, or JRA, 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,” Caitlin 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) Keeping 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 are 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) Fun Distractions – 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) Music – 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) Going to 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 everyday 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.
...My son's arthritis was horrible. Both of his ankles, kneew and hips were very swollen and at one point, he could not walk.
...My daughter also does not eat corn as it causes joint pain and/or inflammation for her.
Feel free to reach me at
Gabimbanks@gmail.com
Or read my (brief) blog here http://burdensbecomebridges.blogspot.com/
Treatments for both kids: gluten and dairy free diets + supplements based on their individual labs from our Holistic MD Pediatrician. My daughter responded well to a digestive enzyme but my son did not. He had a type of bacteria in his stool (discovered from a comprehensive stool test administered by our holistic ped.) that was killed after 10 days on Augmentin, a prescription antibiotic. YES, it was that simple. Since he completed that Rx a year ago, he's been completely symptom free of his arthritis!!! It's gone! Before he took Augmentin, he has elevated inflammation (ESR and CRP) for 9 months!
I highly recommend daily prayer and searching for a holistic MD to help with JIA. Doctors know there is no "drug" cure but there are alternative treatments that worked for my kids.
My son Nick is almost 13 and was diagnosed at 4 with Systemic JRA or now JIA... anyway its been a long road but luckily we never lost our sense of humer. We love to laugh and make others laugh too.
Thank you KAD
I too will be riding in the upcoming CCC tour and will make a point to introduce myself to your dad.
All the best,
Mike
I have RA and have to take Ibuprofen every 6 hours. In between meals I take a powder called l-glutamine (recommended by my Natural path Doctor.It coats the lining of the stomach and intestines. It works for me.I wish you all the best with your son.
Take care,
Carol from NH
http://thewarrens-baileysmama.blogspot.com/
http://www.youtube.com/user/BaileysmamaJRA
Mentally it's hard to stay on track. I managed to overcome those difficulties by learning how to cope. I learned a number of coping skills that have made it less hard for me to get through school. God knew what he was doing when he chose me to live this life because I have what it takes to fight a condition like mine. Fighting a condition takes faith, optimism, and fight. I had to have faith in myself and in doctors, I have had to be optimistic in times when and where things seemed impossible and I had to fight when I didn't feel I could fight anymore. I feel as though the cards i have been dealt have made me view things differently than most. I never take anything for granted I live everyday like it's my last, and i truly believe that i can beat anything because of all the hardships i have overcome. I believe everything happens for a reason, and we have a choice weather or not to live our lives to its full potential. I believe in something bigger than all this that must connect us all. I believe in a plan, I believe that i was chosen to live this life even if i don't agree with the plan.
I love to explain how i have made it through numerous procedures such as Bilateral Hip Replacements at the age of 15, and a numerous Cortisone injections in my wrist ankles knees and hips, I like to be an example so talking about my illness is not a bad thing for me at all. The negatives of being in school with a chronic illness is having to take medications. Most of the medications i take effect my body Differently and then having to go to school; it makes it hard because not everyone can understand mood swings or hot flashes. People are curious and opinionated and even if they don't know the situation, they will still chose to give you their opinions. But part of coping I focus more on the positives ; I have inspired a lot of people , The ones that have seen me and witness my everyday battle have been with me in this long war. They have a sense of respect for me, It was either going to make me or break me . This situation has made me wise and humble.
www.rxkeys.com
In our experience, prednisone has always done the trick as a quick fix for swelling and pain. But sometimes, it can take a short burst of a higher dose to do the job. Our doc always did five days on a high dose, and then 3 weeks completely off.
Since Kaylee was just diagnosed in December, your doc might be waiting to start a biologic to see if the MTX will be enough with the naprosyn. It can take up to three months for MTX to be really effective....
As for schooling - there is so much to say. I'd recommend contacting your local Arthritis Foundation chapter and requesting a couple of copies of "When Your Student Has Arthritis". They are great for educating the school teachers, nurse, administrators etc. You might also want to consider a 504 plan for your daughter....
Please feel free to e-mail me directly:
bookissmom "at" yahoo.com...
Best hopes to you-
Colleen - Caitlin's mom, systemic JIA
Gary, About Kylee
My daughter Kylee was diagnosed with Polyarticular Juvenile Idiopathic Arthritis in December 2009. She is currently on 25 mgs of Methotrexate by injection once a week. Also, 740 mgs of Naproxen (slow release) and 2000 MGs of Tylenol(rappid release) and 2 mgs of Folic Acid each day. She is experiencing a lot of joint pain, and cannot sleep at night. Her Rhuematoligist has just prescribed 20 mgs. of Prednisone daily to help with the pain, but so far we see little or no relief. This is very discouraging. Does anyone out there have any suggestions, and does anyone else have any experience personally or working with family members with JRA??? Any other information would be helpful and useful for use and with her schooling. Thanks
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