How I managed to be pain free for over a year
I was diagnosed with JRA at 18 in 2001 in Germany, after an initial 6 months of going from doctor to doctor and only cortisone as medication. My JRA(JIA) affected all my joints, from the neck down to the toes.
I then received MTX during a 5-week hospital visit where I met lots of other young people with arthritis.
How JRA impacted my body and mind
I was told I would never be able to ski, run, or do any sort of high-impact exercise. This was a shock since until then I had been doing ballet, athletics, and lately, martial arts. Sports were a part of me. Apparently, not anymore.
The next year was a blur, it was the last year in school, the year that would decide what university I could go to, depending on my grades. I could not attend sports classes anymore. My classmates were nice about it, but nobody understood how I could have an old people's disease when I was just 18.
I was embarrassed at my own body and tried to hide it as much as I could. I got a disability pass valid for ten years since I could not move very well anymore. The pain was overwhelming.
Exercise can help manage JRA symptoms
I had an amazing physiotherapist when I came out of the hospital. He emphasized strength training and never accepted my excuse that things were too painful. All I wanted was a simple massage since I was stiff as a board all the time. All he wanted was for me to realize that I needed to strengthen everything around my joints if I wanted to get better.
I did get better, the medication started to work after about 3 months. I am still on MTX today, 19 years later.
I could cycle again, walk, swim, and most of all, have some quality of life. After two years, I went to university in England, relatively pain-free, with quite a lot of energy.
I forgot everything my physiotherapist told me about strength exercise and only walked and cycled, relied on my medication to work. This all changed about four years ago.
Up until then, I had done only low-impact cardio exercises such as walking and swimming. I had a wrist replacement 9 years ago while living in the US, the arthritis had eroded the joint so much that my bones had started to fuse, but not in a good way.
It still hurts (do NOT believe surgeons when they tell you that you will be pain-free after surgery!), but it is far better than before.
I can open a jar without much help these days, unimaginable before the operation. So back to what had changed 4 years ago.
Medication helps JRA, but exercise does, too
I read up on exercise, and how important it is to strengthen your muscles, especially when you take drugs such as MTX. I had been told I would get osteoporosis, my bone density was decreasing, even with taking vitamin D, folic acid, and all the other supplements we all get.
No doctor ever told me what to do about it, other than taking more drugs. I decided to start very gently with some strength moves.
The first thing I noticed was that morning stiffness became weaker. I had more energy. My posture started to change, I walked more upright, hunched less when I sat. Life got constantly in the way, however.
Up until that point I had lived in three different countries, didn't really know where home was, went through a divorce, had more job changes than underwear changes, and no idea what direction to take. You all know how that is NOT good when you have arthritis. I had flare-ups all the time, was put on biologicals with MTX, received pain killers.
I now live relatively settled with a partner in England (though we do want to move again soon, obviously). I continued with my strength exercises, but I plateaued. I did the same exercises every single day. They still helped, but I did not improve my fitness, my muscles got used to the exercises.
I had flare-ups and relied on pain medication. Up until a year ago, I had cortisone shots every three months to keep the pain under control. Suddenly, when I changed my workout routine, that changed. I have not had a cortisone since, the only time I take pain killers is for headaches or fever. I forgot how arthritis pain feels like, I do not have it anymore. So what had changed?
The power of routine to support JRA symptoms
Instead of doing the same exercises over and over again, I decided to try out the following routine: Focus on core exercises on Monday, yoga Tuesday, leg exercises Wednesday, yoga Thursday, arm exercises on Friday, rest on Saturday, a run or heavy cardio on Sunday (I guess my doctors were wrong about that).
I go for a walk outside every day (except rest day) for at least one hour. I stretch for 20 minutes every single evening. I take regular rest weeks where I only walk regularly to prevent burnout. I bought dumbbells, just lightweights, and concentrated my core, leg, and arm days on strength exercises.
I changed from writing exercises down to doing exercises on YouTube. The written-down exercises meant I never changed them and just stuck to one routine. I especially like the channel by Syndey Cummings, a personal trainer with a great variety of workouts.
I went to therapy to work on my mental health, and I decided to not want to control everything in my life, which is much harder to achieve than it sounds. I surrounded myself with loving, kind people and let go of those who dragged me down.
I changed jobs to a job where my boss appreciates me and I enjoy what I do. I still have lots of stress, but instead of controlling it, I acknowledge the stress, then move on. I try to talk more about how I feel. I do think that exercise was the starting point for all that.
Having JRA and being pain-free
It made me feel more confident in myself, allowed me to talk more, allowed me to explore my mental health. I have a routine and follow it ardently. I speak to other people who exercise and who have the same magic feeling afterward. I exercise and the worries disappear. I am more resilient, less impatient, and most importantly, I am pain-free.
Sometimes I forget I have arthritis, my partner needs to remind me to take my MTX injection.
One thing I wish for people like me is that doctors tell us about the amazing effects of exercise. Instead of prescribing yet another painkiller as a quick fix, they should work on an exercise regime.
Health services should pay for us to have personal trainers. The costs for that would be insignificant compared to the costs of joint replacements, new drugs, heavier painkillers, not to forget the mental health toll of the disease, the days off work, the days you can't spend with your kids or partner or friends.
Next time I see my rheumatologist, I will tell her about this journey and hope that eventually, someone will listen.
Everybody is different, what works for me might not work for you in the same way, and I wish I had had a personal trainer who would tell me the best ways to gain strength rather than spending four years trying to figure it out by myself. I did figure it out and I am grateful that I have my energy back, that I feel good in my body, and that I can share this with others and hope it might help someone else as well.
How often you do experience an unexpected boost of energy?