15 Questions - Staying Active Despite Lupus

1. I am 50 yrs. old and have rheumatoid arthritis (more than 25 years) and lupus (for the past 3 years) and I am borderline osteoporosis. I have always been hesitant about going to a gym to work out because of the pain, stiffness and swollen joints associated with my disease and my uncertainty of the gym instructor's knowledge of how to work with someone who has such ailments. What exercises do you recommend other than swimming and using the treadmill? What activities do you recommend?  -- San Leandro, CA

Finding the right fitness professional is the first step. I always provide my clients with my certifications and credentials at the onset. You should make sure to do the same. Some of the certifications that are important and any certified personal trainer should have come from the following organizations: National Academy of Sports Medicine (NASM), American College of Sports Medicine (ACSM), and National Strength and Conditioning Association (NSCA). You should also not feel shy about asking for names and contact information from past or current clients they train, especially if their clients live with the same illness that you do. A good trainer will make sure you feel comfortable and will listen to you before each visit. I spend time listening to my clients and making sure that the “work out” we are doing matches how they feel that day both emotionally and physically. Our goal is to make sure you leave feeling better than when you came in.

Looking into the right facility or gym is important as well. I recommend sticking with a place that has a pool and cardio equipment. Swimming is great but I would also look into aqua aerobics to help with joint stability and range of movement. Walking on the treadmill is fantastic, no matter how fast or slow you go. If you feel well enough, you can start to incorporate some low impact arm movements while walking at a slow, comfortable speed.  Resistance training would also provide some benefit. If possible, try to exercise at least 3 times a week for about 30 minutes. This will help to get your cardiovascular system going. However, it is ok to give yourself a break and adjust your routine to suit how you are feeling that day.

Always remember to keep your physician or medical team up to date on any changes to your exercise routine and/or beginning of an exercise routine.

2. I have a form of lupus that attacks my joints.  I'm 51 yrs. old and have already had 1 knee replacement - on my way to a 2nd one.  I train 6 times a week - low impact, elliptical, weights.  My concern is the weight training and if it accelerates deterioration in the joints.  I'm usually sore (not too much) after training. -- Los Angeles, CA

Based on the history given and your pending knee replacement, I would suggest reviewing your six days a week training regimen and modifying it to suit some new goals. Your new goals should change and reflect your recovery from surgery.  Think about working on strengthening your core muscles and your hips. They are critical in maintaining balance and are important to keep us strong as we age.  Many people with lupus take or have taken steroids at some point. Steroids impact bone strength so anything you can do to keep your muscles strong and support good balance will benefit you down the road. I agree that weight training can be painful to joints. Concentrating on proper body mechanics and core stability is crucial and can be a focus while your knee heals.  More importantly, you must remember to give your body time to rest.  Don't exercise if your joints feel hot, swollen, or tender. Exercise will make these symptoms worse. Again, you can expect some pain, but you also need to be safe.  Keep up the great work and remember to keep your physician, physical therapist or anyone involved in your medical care and recovery from surgery, informed of your exercise goals.

3. Last autumn, I had a severe flare-up where I ended up with mental health problems and in intensive care for a month, so they duly flooded me with pednisolone steroids. I have put on lots of weight and extra pain in my shins and feet.   My consultant said it was not advisable to conduct in cardiovascular exercise, as I also had heart/lung problems.  Is there any low impact exercise I can do at home, that are quick and do not put pressure on my lower limbs?   The excess weight is also getting me down. -- Swindon, England

Let’s take a different look at this and think of it as a new beginning.  Let’s clean the chalk board and start small.

A low impact aqua aerobics class would be great to get things started.  This will work on improving your range of motion and muscle activation, both of which are important in maintain and building muscle as well as are helpful in terms of weight loss.  You can also work on improving your core stability in the water.  Strengthening your core is important to maintaining good balance and posture.
A dry land option is working with exercise bands. I would look for a fitness professional that has experience working with people of varying levels of ability and with people who live with chronic conditions such as lupus or arthritis. They are out there and can get your started on the appropriate exercises for your level of ability.   Please do not give up hope. There are always options. A good trainer whom you trust can help you figure out what your options are beyond some of the ideas mentioned above. Remember to start slowly!

4. My 17-year-old daughter was diagnosed with SLE 6-months ago. She is in "remission," in so far as all labs currently are normal. She will be a freshman in college this fall and has a scholarship to play soccer for her school (NAIA). Do you have any general recommendations for SLE patients having to maintain this level of fitness (i.e., collegiate soccer)? Any recommended reading on the subject? Any recommendations for her coach? Needless to say, I am a worried parent. -- Lexington, KY

My first suggestion is to make sure your daughter’s physician is completely aware of her scholarship and understands what is going to be needed from her physically and emotionally in the coming months. Once you have done that and you are all on the same page, you should make sure to also get in writing, and are clear on, what your daughter should and should not be doing/can and cannot do. Take whatever document(s) your physician gives you to your daughter’s coach along with background information on lupus that you can get from the Lupus Foundation of America.

This is a new diagnosis and I know there is a lot of information to take in and understand. This is a disease that waxes and wanes and is different in each person. What can trigger a flare in one person may not be a trigger in someone else.  Learning how to manage and live with lupus isn’t easy and your worry is well justified. Open lines of communication with your daughter’s health care team is critical. Your daughter should be aware of this as well and should always feel comfortable calling her physician if she has any question or concern. 

Communication with your daughter, her medical team and her coaching team is vital and I would make sure to have those discussions first.  Your daughter’s coach may not be familiar with lupus so you and/or your daughter should arrange for her coach and her doctor to speak before the season and practices begin. They should speak more than once during the year. This person should be aware of her need to wear sunscreen as well as have a uniform that has sun protective properties if possible. Your daughter and her coach should also be aware of the potential fatigue that she may experience. Your daughter should be sure to listen to her body and know when it is time to take a break or rest. This is going to be vitally important. 

I realize this is a delicate and stressful situation given the combination of a diagnosis of lupus and your daughter’s scholarship.  I would check with the school to see who manages the women’s soccer team, whether that’s a department head or an athletic trainer. This person should also be brought up to speed and made aware of your daughter’s lupus. It is one more person that can remind your daughter to put on sunscreen before she hits the field! 

Also, it would also make sense for your daughter to find a “buddy” through a local Lupus Foundation of America chapter. By this, I mean find someone who is around the same age as your daughter who has lived with lupus for a while and can talk with her about how they adjusted their routines or acclimated to a college environment. Peer to peer support is always useful and understanding how lupus can impact your body and mind -- from someone who has been there -- will help her as she begins her transition. 

5. Before getting diagnosed with lupus, I was a marathon runner. Do you see many people with these conditions return to marathon running?  And if so, do you have any tips on how to train? -- New Richmond, WI

In addition to being a personal trainer, I am also a triathlete and endurance coach. For those who enjoy distance running, I can understand why you would be anxious to continue doing what you so enjoy.  This is however, not an easy situation. I wish I could say I have seen people with chronic illnesses like lupus come back to running and participate as they did before their diagnosis. This doesn’t happen often; however, it does not mean it is not possible.

Before doing anything, first consider the overall impact and demand that running can have on your body. I would make sure to find a local fitness professional that has experience working with people who live with chronic illnesses and talk with them. Provide them with a complete history of your condition, what your workout and running regimen was before lupus, what you have been able to do since diagnosis, and what you hope to achieve in the future. A trained professional will look at the overall picture and help make an assessment. Your biomechanics will need to be reviewed as well. Distance running not only impacts your body but your mind. Please remember to take that into consideration. Most importantly, keep your health care professional or health team involved and aware of your fitness goals. They will be able to give you guidance and advice as well based on your health history and their in depth understanding of lupus.

6. I am a personal trainer as well as a lupus patient.  I find it difficult to gauge how much is too much when it comes to exercise.  I want to push my clients (as well as myself) but not too far as to cause excessive fatigue or joint pain. Do you have a particular scale or questions you ask to be sure to push without causing a flare? -- Virginia Beach, VA

Take a look at proper muscle activation and integration. As you know, building a strong foundation of core strength and balance is important. For example, an exercise like the plank, which truly tests core stability, is the type of exercise you may want to consider focusing on. These exercises help with muscle endurance and balance, both of which are important for a variety of reasons. As we age, balance is not as easy to maintain nor is core strength and muscle mass. Exercises that focus on these areas should not be overlooked. 

Take some time to break down exercises to their true form, and then once you feel you have mastered it, or feel good while doing it, you can begin to challenge yourself further by adding a leg raise. We always want to challenge our clients but safety is the number one priority.  Listen to your body, just as you listen to your clients’. For example, I work with an individual with Parkinson’s. This person was an avid cyclist, runner and hockey player. His biggest concern now is making sure he is generally healthy overall. He wants to remain in shape and reconnect with his body but is so used to pushing himself in his previous “sports life” that slowing down and reevaluating is not easy for him.  We worked on muscle activation so that he feels more in control. For an individual with Parkinson’s, this control is very important. I worked on core activation with him until he got it, felt it and felt good about it and himself.  He listened honestly to his body, which was telling him to slow down; he accepted it and it has made a big difference.

Remember, you want to work to slight-moderate muscle fatigue, not failure as it relates to general fitness.  Joint pain can be accommodated by reevaluating multi-joint exercises and how we do them based on weight bearing.  I think what you’re doing is great and I have great admiration for you in getting out there and helping others. I wish you much success

7. What forms of strength training do you recommend for joint pain? I tolerate yoga very well. Working with weights really hurts my wrists. -- San Antonio, TX

Staying up to speed with your flexibility is very important.  As you probably know, there are a variety of forms of yoga. Trying one form if you are used to another could be a nice change and prove to be a new challenge. Some forms can be more demanding than others, but all help with body awareness and control.  Another suggestion would be to attend aqua aerobics classes. This form of exercise will maintain and possibly increase your range of motion. Another consideration would be to work with resistance bands. However, I also highly recommend finding a fitness professional who you can speak with and who can guide you on what the best routine may be for you given your joint pain.

Please be sure to keep your health professional or health care team updated and informed about any changes to your daily exercise regimen.

8. I work out five days a week, usually 2.5 - 3 miles on the elliptical in 35-40 minutes and then 20-25 minutes of weights on motion machines.  What is a good ratio for arms/abs/legs? -- Cayce, SC

The ratio really depends on your needs and goals. What is the result you are looking for?  A specific ratio depends on the person and their ability or overall limitations and concerns. And, keep in mind these can change over time based on your overall health situation.

9. Describe a typical exercise routine for someone over 50 that include cardio and light weights. -- Tiverton, RI

I would never say there are typical exercise routines for someone living with a chronic illness. Goals can vary depending on your current state of health. If you are getting over a major flare, as your fitness professional, I would recommend something completely different than if you were feeling great, were flare free and/or had no joint pain. If you belong to a gym, seek out the fitness professional there and ask them a few questions. Make sure they are aware of your history and understand what you are looking for out of your exercise routine. They can help you to create a program that is right for you at that time. They can also provide you with some suggestions for days in which you may not be 100% or are getting past a recent flare. The variable is your current fitness level, have you been cleared to exercise, and what are your strengths and weaknesses that may need to be addressed.

10. Do you have any tips for staying motivated?  It seems that between the awful things that drugs have done to my once fit and trim body and the effects of fatigue and illnesses it is hard to stay on track with diet and exercise. Often doctors’ brush off the difficulties brought about by gaining weight due to having a chronic illness (they also tend to dismiss the fact that steroids and many other drugs can contribute to weight gain regardless of lifestyle).  How can we change this and get better support? -- Richmond, VA

Keeping motivated is so important and I can certainly understand how much more difficult it is when you are not feeling well. Some of my clients who live with chronic illnesses feel much the same way you do. Make sure you keep your expectations realistic. Start slow, any exercise is better than none.

Look to reprogram yourself. Start by keeping a log that tracks your daily routine. Track your food intake and amount of exercise on that day.  Writing things down can make things real; make you more committed to staying motivated and help you to understand your body and its limitations a bit better.

Write down how you are feeling each day and the exercise you did to accompany that feeling. Track how much rest you are getting as well. Track your medication intake on the days you are exercising. Write down not just how much you took but when. All of this information will, over time, help to paint a picture for you (as well as your physician) and will be helpful to maintaining your overall health as best you can. Having this information is valuable so that you can make better choices for yourself in the future.

11. Some times when I'm being active, I start feeling like I've over done it and it takes days to get over (having to rest more and pain meds).  My question is how do you stay motivated to be active when it seems to cause the above. -- Oklahoma City, OK

Based on the activity you’re doing, you have to listen to your body and possibly take frequent breaks to continue.  Don’t be so hard on yourself. Give yourself a break – literally!

You are going to have days that you don’t feel as good. Adjust your routine and your expectations to how your body feels on those days. In addition, look for alternate activities you may enjoy to help build your existing endurance and flexibility. Flexibility and strengthening your core are so very important, particularly if you are taking medications like steroids where bone loss and osteoporosis may be more of a concern to you. You’re already motivated to stay active -- that is half the battle. Now, take a look at what you are doing and combine it with how you feel that day along with alternative exercises.

12. I have joint pain every day; I am wondering; what is the best workout to do to ease some of the pain? -- Marietta, GA

I would suggest looking into finding a pool in your local area.  Start with some easy walking in the shallow end and walk from one side to another. Start out slowly and build up the repetitions as you feel up to it.  Walking in the waist deep water helps with abdominal strength because you maintain your balance while also working hip and leg strength.  This is a great start to a non-weight bearing exercise that will take the pressure off the joints.

13. I am so tired all the time. I hardly have the energy to work. How can a person exercise and work a job? -- Bluffton, IN

Any exercise is better than none. By exercise, I don’t mean taking an hour long aerobics class or walking miles each day. You can start by taking 5 minutes a day with some stretching and /or a 5-10 min walk a day at work or at home.  I realize this can be a huge first step for someone who not only has so much going on, but then also has lupus. If that 5 minutes turns to 8, that is great! Or if the 5 minutes once a day turns to 5 minutes several times a day, then even better.  Relaxation exercises have great value as well. Removing stress or finding ways to manage it is also important. Sometimes we can get caught up in time – not having enough of it in particular, but if you work your exercise into your daily routine, you will find it to more manageable. The Lupus Foundation of America has a great deal of useful information on their website.  Specifically, the Fall 2006 issue of their national magazine, Lupus Now, featured an article called Desk Tai Chi where desk exercise and ways to reduce stress were offered.

14. When your muscles and joints are hurting due to lupus, are you doing yourself any harm by pushing through the pain and doing things like playing tennis no matter how much you hurt? -- Sylacauga, AL

You seem to be doing something you love. However, you should remember that you need to listen to your body. I don’t think that point can be said enough. I would never say stop doing something you love, especially if it helps to relax you and in some way manage stress.  I will say if you want to continue playing, then do it in moderation and limit the amount of time you play so that you can go on to play another day.  If you are playing outside, remember to wear sunscreen and sun protective clothing as well.

15. How does one go about overcoming the disabling pain and extreme fatigue to become and stay active? I was diagnosed with Lupus last year. I am 23yrs old and was already overweight prior to my diagnosis. I have a 3yr old daughter and sometimes the pain and or fatigue is so bad, I can't even get out of bed to care for her. If it weren't for my family, I would have to put her up for adoption. Having to stay in bed days at a time is not healthy since I am already overweight. I don't know what to do. -- Baltimore, MD

Having young children myself, I am happy you’re reaching out and looking for ways to build an active lifestyle while being diagnosed with lupus.  You are taking the first step, though difficult, you’re taking it!  By staying active within the LFA web site for updated information and guidance, you will see that you’re not alone.

Start with a log of your health care professionals. In this log, include daily entries such as how you’re feeling, what medications you’re taking, and what activity you did for that day. This will be very important in the future because we need to figure out what works for you and stay on that course to get you to stay active and help get through those rough patches.

We need to start small. Set small goals for yourself such as walking for 5 min, then adding 2 minutes every week. A larger goal could be seeing you at the Lupus walk next year?

Moving forward, you need to find ways to build strength, flexibility, and endurance so that weight management becomes part of your daily life.  I am not a big fan of the scale. Look to your clothes to tell you how things are going, not the number on the scale.  My thought is that finding a comfortable weight will lessen the stress on your body that you currently feel.

Some activities to look into are yoga, stretching classes, or an aqua aerobics class. These planned activities can help you get out the door and into something you will hopefully enjoy mentally and physically. 

I hope this helps and you have your biggest fan, your 3 year old daughter, and a new cheering section, ME!  I know you can do it.