Growing up, I always looked forward to the long, warm, sunny days of summer. But ever since my diagnosis with RA, the summer months have become more complicated.
You may have heard that cold winter months can trigger rheumatoid arthritis (RA) flare-ups, but what about the summer? I hate to be the bearer of bad news, but warm sunny weather can also pose unique challenges to people living with RA.
Some medications commonly used to treat RA can cause photosensitivity, also known as sun sensitivity.These medications include methotrexate (Trexall), azathioprine (Imuran, Azasan), leflunomide (Arava), and hydroxychloroquine (Plaquenil).
People on these medications are instructed to avoid excess sun exposure, which can be a huge lifestyle change for people who enjoy lounging around the pool in the summer.
Another reason people with RA may have sun sensitivity is if they have Sjogren’s. This condition is also associated with photosensitive skin rashes.
Like some others with RA, I find hot weather can lead to discomfort and fatigue even if I’m not in direct sunlight.
Researchers are still not sure exactly how or why temperature changes affect RA, but many folks find that extremes in weather or weather changes can trigger flare-ups.
After analyzing my own patterns, I’ve found that heat and sunlight each independently trigger fatigue, but when both are present, the effects are more severe. I also find that my joints swell painfully in excessively hot weather.
While taking methotrexate for the last 18 years, I have learned to modify my summer schedule to avoid excessive sun and heat exposure.
These are my six best tips for coping with sun and heat sensitivity.
I’m able to prevent a flare-up from sun or heat by avoiding sunlight and heat altogether. However, that’s not always feasible or desired if I want to actually live my life and participate in meaningful summer activities, like going to outdoor events with friends and family.
So, I have to find a happy medium. Whenever possible, I avoid direct sunlight during peak hours (between about 10 a.m. and 3 p.m.). For example, I try to schedule social gatherings for dinner or sunset rather than lunchtime.
In the middle of a heat wave, I try to arrange for air-conditioned activities or plan outdoor activities for the coolest time of day. Additionally, I always bring a small portable fan with me, or a dual fan and spray bottle to provide extra cooling.
If I need to be outdoors during peak heat or sunlight hours, I protect my skin by:
Adequate water intake during the summer months helps to prevent dehydration, but did you know it can be even more important if you have RA?
The disease process for RA involves inflammation of the synovial fluid and synovial lining of your joints. Staying hydrated can help maintain the lubrication of your joints, which helps them move smoothly.
Learning to correlate my daily activities to my symptoms has been very empowering for me. This involves symptom tracking, a skill you can apply not only to heat and sun exposure, but also to things like food choices, exercise, sleep, meditation, and of course, medications.
I started by tracking the days and times I was exposed to heat and sunlight and noting the amount of fatigue and pain I felt on those days.
I discovered that both heat and sunlight could cause fatigue and pain for me. Some people might find that they are only sensitive to one and not the other, which can be very helpful when deciding how much energy to put into avoiding sun or heat.
Knowing your triggers can give you a sense of control over your condition. It’s also satisfying to feel like you can make informed decisions about when — and how much — to push yourself.
It’s one thing to know what your triggers are and how to avoid them. But what do you do when your health needs conflict with your social needs?
Unfortunately, sometimes others don’t understand how serious RA is because they don’t see anything “wrong” on the outside.
Our friends and family might also not understand that RA can make someone more sensitive to sun or heat. You may have to explain to friends and family that your need for shade is medical and not a simple preference.
I’ve had to learn to stand my ground and advocate for my medical needs, which sometimes sadly does mean missing out on social activities when there are no shaded or cooling options (like air conditioning) available.
While growing up in infamously cold and gray Seattle, I eagerly looked forward to the summer months when I’d finally get some vitamin D and soak up the sun’s rays!
However, ever since getting diagnosed with RA, the summer months have become more complicated. I’ve had to learn to balance my social needs with my medical ones, and I’ve had to learn to cope with FOMO (fear of missing out).
Sometimes, it’s worth it to push myself to spend more time in the sun or heat than is ideal. For example, I will accept the fatigue hangover that comes with sun and heat exposure in exchange for attending a dear friend’s outdoor wedding.
Other times, I have to simply accept my limitations and accept that my medical needs require me to spend less time in the sun and heat than others. It’s hard to miss out on outdoor activities and can trigger people to grieve what their illness has taken from them.
Receiving therapy from a licensed health professional has greatly helped me accept the many ways RA has affected my life.
Cheryl Crow is an occupational therapist who’s lived with rheumatoid arthritis for 18 years. In 2019, Cheryl started Arthritis Life to help others thrive despite arthritis. She facilitates online courses and support groups to help people adjust to their conditions and live full and meaningful lives. Most days you can find Cheryl creating life hack videos, sharing patient stories on the Arthritis Life Podcast, or spreading the word about Acceptance and Commitment Therapy (ACT).