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Lupus Coping Corner

Seasons Change, So Does My Lupus

Jessica Rowshandel, M.S.W.
Amy Caron
Project Director
Lupus Research Institute

Autumn is a beautiful season. Trees shed their leaves in a colorful show, it’s pumpkin time, fall TV starts, and we get to snuggle into our favorite sweaters and sweatshirts. For some with lupus, this change in the season marks a respite from flares triggered by the humid, sunny summer months, but for others, lupus can be more active in the colder seasons. Plus many people, with lupus or not, may feel a bit blue in the winter months which can make it more difficult to keep up with self-care regimens. If the winter months trigger flares and you find it more difficult to manage your lupus - you’re not alone. I’m with you, as are many others. Here are some things to remember and prepare for as we enter the winter season.

Stay Physically Active

Why? Trust me, I know- this is a hard one. Gone are the days of just lathering on sun block and putting on a hat to go for a walk outside. As the weather gets colder, we need to get more creative and dig deep for motivation. When it’s hard to even think about moving, remember that appropriate exercise can not only soften up and strengthen stiff muscles and lubricate the joints, it can also release all sorts of delicious feel-good chemicals in our brains. I know, you may get tired of hearing that… but it’s true, exercise can make us feel better physically and mentally. (To learn more about research on exercise benefits, click here for information about exercise and depression, click here for studies on exercise and lupus symptoms, and click here for a study on exercise, obesity, and impact on intellectual skills in lupus patients.) 

What to do? First, talk with your doctor to make sure you’re doing the right exercises for your lupus, especially if you’re more prone to flares in the winter. If you feel better exercising at home, your doctor may have some exercise and stretching handouts. If you have cable television, your provider may offer free exercise channels. There are also countless podcasts, apps, websites and videos online that can help guide you through exercises. Once you know the right type of exercise, there are lots of resources to help you at home.

If you’d rather go outside for a walk, light jog or bike ride, remember to dress in layers, especially if you’re like me and have Raynaud’s;  you need to keep your feet and hands especially warm. Don’t forget sunscreen, always.

If you like group exercise, tai chi and swimming are both great examples of indoor activities. Your local community or recreation center may have free or low cost programs available. For instance, here in New York City we have BeFitNYC which is a resource listing of local recreation centers and programs like swim or dance classes. Check your state or city websites for information.

Stay motivated, be honest. Exercise is a proven, powerful tool we can use to fight lupus and seasonal- change symptoms. It’s something we can control, and that’s the motivation to do it. However, you need to be honest with yourself and listen to your body. You’re responsible for pushing yourself to work harder, but also for taking it easy when you really need to. I’ve had many days when I couldn’t manage to put my bra on because my shoulders were so stiff. Sit it out those days. Take a warm bath with Epsom salts, rub in the Icy Hot, relax, and get back at it as soon as you’re ready. For some common questions about exercise and lupus from our community, click here.

Take Flu Prevention Seriously

Why? Flu causes millions of illnesses, hundreds of thousands of hospitalizations, and thousands of deaths each year. If you’re on chronic steroids or immune suppressants, you’re at a higher risk for developing flu-related complications. Even if you’re not on maintenance drugs for your lupus, the way lupus affects the immune system can make it harder for your body to fight it off.  

What to do? Wash your hands. Disinfect stuff. Don’t share things with or touch people and don’t feel bad about it. Don’t get the flu because you felt like you had to shake someone’s hand. Most importantly, talk to your doctor about flu vaccine options and if you know what vaccine is right for you, go get your shot. Click here for detailed recommendations.

Check your Vitamin D

Why? It’s not at all uncommon for us with lupus to have low vitamin D, and for most people level of vitamin D declines in the winter given low daylight. Low vitamin D has been linked with disease activity (click here for a recent study). Some evidence showed that declines in vitamin D triggered flares in non- African Americans (click here for more information). Vitamin D is also important for bone health, especially for those on steroids.

What to do? Don’t simply start taking supplements. Ask your doctor specifically about your vitamin D levels first, and do it early in the season. A simple blood test can tell you if you’re deficient or close to it. Sitting in the sun or a “safe tanning bed” is rarely an option for lupus patients although it’s a common recommendation (talk with your doctor about sun or artificial light exposure before even considering it). What we can do is eat more fatty fish like salmon, trout, mackerel, or canned tuna. Mushrooms, fortified milk, cereals or juices, or egg yolks (if cholesterol isn’t an issue) are also good vitamin D sources.  Sadly, it’s not easy to get vitamin D levels to normal ranges using just food sources and little sunlight, so a supplement may be required. There are many different brands and types of vitamin D, so if you’re told to take a vitamin D supplement, ask your doctor for specific recommendations – for instance, which one, what dosage and if it should be combined with calcium. You can also ask your pharmacist before tackling the vitamin aisle on your own.

Talk it Up

Why? It’s easy to become more isolated in the winter months and fall into a mini hibernation with our own thoughts. It’s natural to feel sad some days, but without a support system, it’s harder to pull yourself up and out and ‘some days’ may turn into long stretches. Relationships are our safety net. They keep us motivated and help us solve problems. There are countless studies that point to the connection between lack of social support and depression.

What to do? I am an introvert. I’m guarded, and I absolutely understand the difficulty in talking to friends and family about lupus or just being bummed out. I have a small handful of friends and I’ve learned over time, by taking risks and reaching out, that among just these few friends I have the strongest supporters I’ll ever need. Think about the people in your life and give someone a chance to hear you.

If you’re not ready to talk about your lupus with your friends, consider engaging with the online community. Lupus is one of the most widely represented diseases in online social networks. Connect with someone on our Facebook page and start a chat. While you can’t look to Facebook in this way to get medical or treatment advice, you can certainly chat with people to feel more connected and less alone in what you’re experiencing.

Final Thoughts

Whether it’s summer or winter that affects the activity of your lupus, there are things you can do to stay well. Stay focused on what you can do and take the right actions to stay happy and healthy, and enjoy what each season has to offer.

Lupus Coping Corner

Disclaimer: The information provided by the S.L.E Lupus Foundation is for educational purposes only and should not be used for diagnosing or treating a medical or mental illness, nor be a substitute for professional care. Consult your healthcare provider if you have or suspect you may have a medical or mental health problem.

Amy Caron, MPH is a lupus patient and Project Director of the Lupus Research Institute provider education initiative.  She is not a physician or counselor.  The suggestions shared in this column are strictly opinions from the perspective of a lay person with lupus. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care.

The S.L.E. Lupus Foundation does not provide any direct medical or psychological services nor recommend or endorse any particular treatment or therapy. The S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.