Q&A with Dr. Betsy Blazek-O’Neill - Winter Wellness

This month, Dr. Betsy Blazek O’Neill explained how to stay healthy during the cold winter months through exercise, eating habits and stress management.

Ask the Experts is a series of educational talks and presentations on a variety of topics designed to provide you with important information about living with lupus. To listen to and download the original presentation, and to see other topics, please visit www.lupus.org/ask.

1. There are days when I can barely get myself out of bed.  What are your recommendations for the days when my energy levels are lacking/low? Garner, NC

The best thing about a regular exercise program is that you can take some days off without losing the overall benefit.  If you plan to get some exercise every day, you can miss a couple days a week, or even miss a few days in a row once in a while, and still maintain your level of fitness and health.  It is important for persons with lupus to pay attention to their bodies, and get rest when needed.  However, you have to be careful that missing exercise doesn’t become a regular habit, as this can increase feelings of fatigue!  Sometimes it can be hard to imagine getting started with exercise on a bad day, but once you overcome that feeling and start moving, you begin to feel more energetic.  On such days, a less strenuous form of exercise than usual may feel better, or you could do your usual exercise with less intensity or for a shorter period.  Maybe you could just try walking a short distance-- see if that’s enough or if you could do a little more.  I would encourage you to try a little bit of exercise on those days, but if it just doesn’t feel right, give yourself a break and get back to exercise on a better day.

2. My Dr. has told me I am allowed one hour of sunlight a day, including walking to and from the car, etc.  I read about lupus patients running marathons and doing many outdoor activities. How is it that some people can be out in the sun and others cannot? Chicago, IL

One of the things that makes lupus puzzling is the great variety of ways it can present itself.  No two lupus patients are alike, and tolerance to sunlight can differ widely from one person with lupus to another.  Also, doctors who treat lupus have different approaches to managing the disease.  You should ask your doctor if the use of sunscreen would allow more outdoor exposure.  Since you live in Chicago, you should also ask if the sunlight recommendation applies to summer and winter months.  In your part of the country, sunlight intensity is much less in the winter, and your physician may allow you more outdoor time during those months.

3. I would love to know why lupus causes individuals to be so fatigued. I first believed it to be due to the pain; now, I realize that even if the pain is under control, the fatigue is still there. I have asked my Rheumatologist this question and he tells me that they just do not know the answer addressing fatigue. Could you shed some more light on the subject? Emporia, VA

Fatigue is a very common complaint by persons with lupus, and your rheumatologist is correct—we don’t know exactly why the disease itself causes fatigue.  However, I think it is important to point out that other factors may be adding to fatigue in persons with lupus.  Medications may contribute to fatigue.   Persons with lupus may not sleep well.  Dealing with a chronic illness is stressful, and people with lupus also have other stresses in their lives, like all of us.  Stress is a major cause of fatigue, because it taxes our immune system, causes sleep problems, and drains energy related to muscle tension and constant worry.  Your question reminds me of a recent study of women being treated with chemotherapy for breast cancer.  The study found that women complaining of “chemo brain,” or difficulty with memory and concentration, actually had those symptoms before they started chemotherapy, and the symptoms did not change during or after the treatment.  The study concluded that stress was a more important factor in causing the symptoms.  If your other lupus symptoms are under good control, consider stress management techniques to help reduce fatigue.  Relaxation or stress management techniques often also improve sleep quality, which can help too.

4. I have a 1 year old daughter that is in daycare 3 days a week! She and I have had SO MANY colds/virus/illness in the past 9 months since she started. What more can we do to stay healthy with her young immune system and my lupus? Springfield, MA

The flu vaccine may be very helpful for you; remember to check with your lupus doctor about the best form of flu vaccine for you.  Other things that boost the immune system are—SURPRISE!—regular exercise, healthy eating habits, and regular stress management practices. Also, remember that kids spread germs all around their environment.  Be attentive to hand-washing for yourself and your children, and keep surfaces clean.

5. In the past I have had some bad reactions to the flu vaccine, so I am hesitant to get it again. Is it recommended for those of us with lupus? New York, NY

The Flu vaccine is recommended for persons with lupus, but every person is different, and you should discuss any prior reactions to flu or other vaccines with your doctor, or with any provider who is going to give you a vaccination.  Certain prior reactions could result in a recommendation against vaccination, while other reactions would not be of concern.

6. I have lupus and I understand that exercise is good for you, but too much can cause pain. I am trying to find the right intensity of exercise that won’t cause severe joint pain and/or a flare. Do you have any tips on how someone with lupus can determine what amount or type of exercise is appropriate for them?   Las Vegas, NV

You should always check with your lupus doctor first to make sure you have been cleared for exercise.  Low-impact exercises are the best for most people with lupus:  walking, swimming, bicycling, and tai chi.  With any exercise, start slowly with shorter periods and low intensity, and gradually build up longer duration and more intensity.  Take a day or two off, or decrease the time or intensity when a flare is starting, but don’t get discouraged or lazy—start back up slowly when you start to feel better.  Every person is different, so you will have to do some trial and error on your own.  Remember to look for some type of exercise that you enjoy, so that you will keep coming back to it. 

7. I like to cook and I am concerned about nutrition and providing for myself and my caregiver (my fiancé). Where can I find some wholesome, nutritious recipes? WV

More and more evidence is showing us that a Mediterranean diet is the healthiest way to eat for most people, because it contains lots of vegetables, fruits, legumes, whole grains, and healthy proteins.  There are several websites, including mayoclinic.org, eatingwell.com, wholeliving.com, and cookinglight.com, that have extensive Mediterranean diet recipe collections.  Any of these would be a good place to start.

8. Fatigue and depression with lupus. How can I handle fatigue and feeling tired during the winter months? New Rochelle, NY

See the answer to question #3 above, and here are some additional tips. Try to find some form of exercise that you can stick with during the winter months, as regular exercise will often help with fatigue. If you can do some of this outside, the fresh air could be invigorating and will prevent feelings of “cabin fever,” or being stuck indoors.  To get adequate rest, try to go to bed at the same time each night, sleep in a darkened and quiet room, and avoid the use of TV or electronics in the last hour before you retire.  Surrounding yourself with positive people is important, so make plans to visit regularly with family and friends that make you feel good.  Try to promote your own positive outlook by focusing on the good things in your life.  A gratitude practice can help with this—take a minute each morning or evening to write down three things you are grateful for.  Cultivate laughter by reading or watching something funny on a regular basis, or spending time with people that make you laugh. 

9. I have lupus of the skin and I am extremely sensitive to light - so sensitive that I have experienced breaking out into a really bad rash on certain occasions.  However, I also suffer from depression which is being treated. I know the sun is important for depression, but is there a way I can work around this? Madison, WI

Consult with your lupus doctor to see if sunscreen would allow you some sunlight exposure without the sensitivity.  You may also want to avoid excessive exposure to artificial light sources, as these tend to interfere with the normal diurnal rhythms that affect the neurotransmitters in the brain involved in both sleep and depression.  Staying up late with lots of lights on and using TV or electronics screens for longer periods in the evening can be problematic.

10. Raynaud’s syndrome is making it very difficult for me to enjoy the normal winter activities that me and my family like to do, such as skiing, sledding, ice skating. Is there anything I can do to keep my hands from going numb and locking up as a result of this syndrome? Marlboro, MA

Raynaud’s syndrome or phenomenon is a condition in which cold exposure to the hands causes constriction of the blood vessels, lack of blood supply, and pain.  The symptoms can also be made worse by stress, smoking, and certain medications.   You may want to ask your doctor if any of your medications could be contributing to your symptoms.  If you smoke, this is a great reason to quit.  Stress management techniques could raise the threshold for experiencing the pain and make more activities possible for you.  In most cases, the problem is managed with lifestyle changes.  Wearing warm gloves or mittens, using hand warmer devices or packets, and avoiding frigid conditions are the best approaches. There are some medications that can be used to treat Raynaud’s if these other methods are not successful enough, and you can also discuss those with your doctor.

11. Due to my lupus, I find that it is extremely difficult for me to finish tasks around the house. This causes me undue stress and then I tend to flare up. Do you have any recommendations to help me get my lupus flares under control? West Palm, FL

Treatment of your lupus flares should be discussed with the doctor who treats your condition.  Remember that regular exercise, healthy eating habits, and regular stress management practices are part of an effective treatment regimen—self-care is as important as medical care!

12. Ever since my diagnosis in 2011, I have been unable to sleep! Is this because of the lupus? And what can I do to sleep better without having to take prescription drugs? Rochester, NY

Lupus can interfere with sleep for various reasons, but sleep problems are so common in our society that you probably cannot blame lupus alone.  “Sleep hygiene” is an important concept; in order to sleep well, a person needs to follow a routine by going to bed at roughly the same time each night, sleep in a darkened quiet space, avoid excessive heat or cold temperatures, avoid large meals close to bedtime, avoid caffeinated beverages for several hours before sleep, and avoid excessive activity or TV/electronics use in the hour before bedtime.  Relaxation CDs or audio downloads can be helpful for falling asleep and improving sleep quality.  Chamomile tea has been shown in research studies to aid sleep, and is safe to anyone to use unless you are allergic.  Other herbal (non-caffeinated) teas may also be relaxing for you if you don’t like chamomile.  Lavender scents have also been shown to be relaxing and may aid sleep.  Sometimes writing in a journal before you go to bed can help release some of the tension related to difficulties you might have experienced that day, making it less likely that those concerns will wake you up at 3am.  Many of the methods I’ve mentioned decrease stress, which is a major contributor to sleep difficulties.

13. My doctors say I have lupus cerebritis and intense light makes me have seizures. It seems that light is important to prevent depression, but I am worried about too much exposure. What can I do? Rochester, MN

Please see the answer to question #9.

14. I was recently diagnosed with depression, which I have never had before. I am reluctant to take medications since I am on so many for my lupus.  Are there other ways I can manage this depression without having to take prescription drugs? New York, NY

Yes!  Probably the most effective non-pharmaceutical way to decrease depression symptoms is to engage in a regular exercise program.  This has been shown in many studies, which have compared exercise to medications used to treat depression.  If you can start with short periods of non-strenuous exercise, like walking, you can build up to longer periods and more vigorous activity.  Eating a healthy diet will insure that you have all the nutrients your nervous system needs to function properly.  Cognitive behavioral therapy and other forms of psychotherapy have been shown to be very effective in managing depression symptoms.  You could also think about developing a creative outlet, like singing with a choir, knitting or sewing, painting or drawing, journaling or writing poetry.  Volunteering your time to help others is also a great way to feel good about yourself and focus less on negative thoughts.  Spend time with people you enjoy, or friends and family that make you laugh.

15. I have lupus and I am unable to enjoy the winter activities that I once loved due to awful joint pain. Are there things I can do to relieve this joint pain? Or are there other winter activities that I can do that won’t cause me aches and pains? Park City, UT

Make sure your lupus doctor knows about your joint pain as he or she makes decisions about how to manage your symptoms.  There are some other things you can do too.  Choose low-impact activities like walking, cross-country skiing, snowshoeing.  Warm up with some stretching and light activity before you start.  Choose the part of the day when you usually have less joint pain.  Try less vigorous activity for shorter periods to lessen joint symptoms.  You could also swim in an indoor pool in the winter—this is a great low-impact exercise activity.