March’s Topic of the Month – Exercising with Lupus

March’s Topic of the Month – Exercising with Lupus

feet-965688_1280Exercise is an important part of taking care of yourself and your wellbeing. Just like everyone else, where possible, people with lupus need to exercise regularly or engage in some kind of movement. It’s very important to recognise that lupus affects everybody differently and so not everyone with lupus can do a wide range of exercises, but most people with lupus can take part in some form of activity. It is also important to realise that the amount of activity you can manage is likely to fluctuate as your lupus does.

 

What are the benefits of exercise for somebody with lupus?
“Exercise doesn’t affect the frequency of my flares, but during a flare my joints are less stiff, I’m more mobile and less fatigued. I’ve also found I don’t get depressed and despondent, and generally feel happier and able to manage my illness more positively.”

Regular exercise is important if you have lupus for many reasons. Some of the benefits of regular exercise include;

10968167_lDecreased risk of cardiovascular problems
Cardiovascular problems (heart attacks, strokes and blood clots) are the leading causes of death in people who have SLE. Regular exercise, especially aerobic exercise, decreases the chances of developing these complications by improving cardiovascular health, decreasing bad cholesterol (LDL), increasing good cholesterol (HDL), decreasing blood pressure, improving diabetes control, and helping to maintain a healthy weight.

Helping to maintain a healthy body weight
Weight problems such as obesity can be a problem for many people with lupus for a number of reasons, including the use of steroids and decreased activity levels as a natural response of trying to deal with pain and fatigue.  Obesity increases the risk of cardiovascular problems and can also increase activity of the immune system and inflammation.

Increased bone density to fight osteoporosisx-ray-1273382_1920
People who have lupus are at an increased risk of brittle bones (osteoporosis) especially because of the use of steroids. Weight bearing activities such as weight training, walking and low-impact aerobics can help to reduce this risk.

model-991420_1280Improved sleep quality
Many people with lupus experience sleep problems, most likely is due to numerous reasons, including dealing with pain, medications that cause trouble sleeping (such as corticosteroids), depression, fibromyalgia and stress. Regular exercise helps to improve sleep quality. Exercise should be done at least a couple of hours before going to bed; otherwise the mind may be too active, making it more difficult to sleep.

“After I’ve exercised I sleep better that night, and it has really helped my mental health.”

Increased energy levels
Fatigue is by far one of the most common problems in lupus and one of the most difficult to manage. Regular exercise helps to improve energy levels. This can at first be difficult for someone who feels too tired to exercise. It is best to start on a programme which gradually increases the amount of exercise over time.

“I feel less pain, especially in my joints and also my energy levels are up; I can clearly feel the difference. On the days I have pain in certain areas I do Pilates. After the session it feels as if it never existed; I guess the gentle movements are good. There are still bad days of course where I can’t leave home or move from the sofa – but overall I feel better.”

“[Exercise] has improved my stamina and I feel less fatigued.”

Improved mood and quality of life

Bored teenager looking depressed, with a grey background

Regular exercise has been shown to significantly improve quality of life beyond just improving sleep and energy levels in people with lupus. It can help to decrease the amount of depression and anxiety, improve self-esteem, improve memory abilities, and increase one’s sense of well-being.

“I feel fortunate to be able to do so much more now as the symptoms of SLE have been such an obstacle in the past and could possibly be in my future; but I’m focusing on what I can do today.”

 

What type of exercise is best?
The best type of exercises for you may depend upon your particular symptoms. It is best to ask your doctor for advice regarding specific exercises or consider asking them to refer you to a physiotherapist for proper assessment and instruction.

“I have lost a lot of my mobility so cannot walk for more than a few minutes. However, I swim and go to aqua sessions three times a week and have been doing this for six years now, since my diagnosis of SLE/polymyositis.”

A good, well-balanced exercise programme should include each of the categories below. If you have significant arthritis in weight-bearing joints (feet, knees, and hips) or the back; then water exercise classes are a good choice. All four categories of exercise are easily performed in water while putting less stress on the joints.

float-462874_1920 “When I swim, I feel happy, pain free and ‘normal’ in the water. It is an amazing feeling. I can squat, run and do exercises I cannot do on land, as I am supported by the water.”

“I find yoga is good both physically and mentally. I think strengthening exercises with weights/kettlebells are good. Cycling is a great form of exercise with less impact on the joints. Also, although swimming is not for me (as I’m not really into it), I would recommend it as it is also easier on the joints and really beneficial. Finally, walking; some overlook it but be it short or long walks, it all counts.”

Range-of-Motion
The range of motion of a joint refers to how far a joint can move in all directions. Over time, arthritis and pain can cause a loss of range of motion and proper function. Maintaining range of motion as much as possible is very important. You should aim to move joints through their full range of motion every day.

Stretching Exercises yoga-1148172_1920
Stretching helps to keep joints, muscles and ligaments limber and flexible. It is important to concentrate on staying relaxed while stretching. Each joint or muscle that is stretched should be held at a point where a feeling of stretching is felt without pain. If it is painful, then you should relax the stretch slightly.

Aerobic Exercises
Another term for aerobic exercises is “endurance exercises”. Aerobic exercises work large muscle groups continuously to keep the heart rate elevated. Examples include brisk walking, stationary bicycling, high- and low-impact aerobic exercises, swimming and dancing.

Strengthening Exercises
When you have pain or arthritis, the muscles around the painful joints begin to weaken, tighten up, and get smaller (atrophy). The muscle can become dysfunctional which in turn causes even more pain and disability. Regular strengthening exercises are vital in maintaining the strength of the muscles and to increase function and improve or retain a good quality of life.

“I started strength and conditioning training with a personal trainer four months ago. It has made a huge difference to my quality of life. I am stronger and able to perform tasks which were impossible or difficult to do before. For example I can now get on the floor to play with my grandson and have the strength to get up again without assistance.”

Information about different types of exercises is available in the Arthritis Research UK booklet, ‘Keep Moving’ available to download or order HERE.

Our video ‘Exercising with Lupus’ presented by LadyXsize demonstrates various exercises you can try in your own home and includes a five-minute stretch workout.

“I love the video, it’s at the right pace for me and the correct exercises for my body.”

 

Where should I start?
It’s best not to jump right into a rigorous exercise programme. Each person with lupus will have different levels of exercise ability. You should discuss with your GP or consultant what the best type of exercise will be for you.

If you’re worried about starting a new exercise, your doctor or physiotherapist can give you a check-up to make sure you’ll benefit from more activity. Work with your healthcare team and develop a plan that benefits you while also limiting any discomfort.

Some GPs prescribe exercise at local sports centres. If you go to a gym or health club, tell your instructor about your condition so that they can give you an exercise plan suited to you.

“I joined a gym primarily to use the swimming pool, was given a free session with a personal trainer, decided to use it and struck gold!! Although I really didn’t think I’d be able to do anything. We had a chat about what problems I had and what I would like to achieve. He researched lupus, I checked with my consultant, and he devised a programme.”

Physiotherapists
36416968_l
If needed, your GP can refer you to a physiotherapist. A physiotherapist is a healthcare professional who helps you remain active and independent. They can advise you about specific exercises and may give you an exercise plan to follow. They’re experts in:

  • assessing movement
  • addressing individual needs
  • helping to improve function
  • managing pain

How can I be referred to a physiotherapist?
Your GP or rheumatologist can refer you to your nearest physiotherapy department, although access may depend on what services are available in your area. You may be able to self-refer, so you make your own arrangements to see a physiotherapist without a doctor’s referral. Self-referral is relatively new in some parts of the UK. Check with your GP or local NHS Clinical Commissioning Group (CCG) to find out if you have an NHS physiotherapy department in your area that accepts self-referrals. It’s very important to give a full medical history to the physiotherapist when you self-refer.

If you wish to be seen privately you can self-refer to a private physiotherapy practice. If you see a physiotherapist privately, you’ll have to pay for treatment. When choosing a private physiotherapist, make sure they’re:

You can find a private chartered physiotherapist near you using CSP’s Physio2u directory.

“A few years ago I started by doing some hydrotherapy prescribed by my GP (I had to ask). At this I realised that most people doing hydrotherapy were much more disabled than me so that encouraged me to go swimming at my local pool when I felt well enough. After about nine months of swimming (sometimes it was only once a month, other times once a week) I started doing an Aquacise class. At first I did not manage the class every week but slowly I pushed myself and I now go most weeks.”

 

What can I do to achieve the best results from my exercise routine?
“I think the key is to build up slowly. For me it’s taken years but I now do at least two lots of exercise a week and I still challenge myself to do a bit more.”

Set SMART Goals
No matter what your exercise goal is following the five SMART guidelines is likely to help you achieve it. It is important to make your goal Specific, Measurable, Attainable, Relevant and Time-bound. You can read more about setting SMART goals HERE.

Keep an Exercise Diary
An exercise diary can have multiple benefits. One way that you can use it is to help set your SMART goals and measure your progress. Seeing your abilities increase over time can be really encouraging. Keeping a diary can also help you decide what kinds of exercise work best for you. Note how you feel, physically and emotionally, after you work out. Write in your diary even on days when you don’t want to exercise or don’t feel well. The diary can help you and your doctor see patterns in your symptoms and physical abilities.

cycling-655565_1280Do Exercise that You Enjoy
“I think it is very important to find something you really enjoy”

When it comes to your exercise plan you need to find something that you enjoy. If you enjoy it, you’ll be more likely to stick to it, which is important, as exercising regularly is crucial for achieving goals and of course for benefiting your health in the long-term.

“I have a treadmill I use when the weather is bad or my eyes are just too sensitive for outside. I can watch TV while I walk so it kind of distracts me from focusing too much on my fatigue and pain.”

“I bought a mini trampoline and just used it on good days to start with. It folds up and I can have it near the television or radio, or take it outside. I find that about 10 minutes is a good way to wake the body up.”

“I love a good audiobook. I often plug myself in and go for a good walk. I get engrossed in the book and forget how far I have walked!”

Buddy Up
young-woman-1178123_1280“When I am exhausted and hurting, the last thing I want to think about is exercising. I know it is important though so what I have found works for me is to have a friend come over and encourage me to go for a walk with her.”

Exercising with someone else can add a lot of fun to an activity you might otherwise find boring or difficult. Make sure to exercise with someone who understands your limitations and goals, and who will encourage you on your tough days.

Another option is to take part in an organised exercise programme. This can be a good way to socialise, become active in your treatment, and get support and encouragement. People who exercise in groups often see better results and stay with their exercise programme longer. For information about some group activities and events in your area, take a look at the English Federation of Disability Sport website HERE, or contact your local Council.

Take it Slow and Steady
“I guess the key for me has been to build up my exercise a little bit at a time. If I don’t manage to do as much one week, I try not to beat myself up about it. Pacing is important, as is getting enough rest in between for recovery.”

sport-1087028_1920Don’t start with an extreme exercise routine, only to burn out quickly. Start slowly and increase your level of intensity when it feels right. You’ll feel more benefits by exercising regularly at a lower intensity than you will if you exercise only occasionally at a high level of intensity. Keep a steady pace and remember to rest between sessions. If you burn out or give up on exercise entirely, you might feel even more joint and muscle weakness

“Being too sore to formally exercise (as is the case for so many of us), I just keep active. I have an Apple Watch which vibrates with a ‘Stand Up’ and ‘Move around’ message and I tend to obey it. It tracks your steps, heart beat and calorie burn.”

“If I am having a bad day it might be enough to go for a short walk and then have a cup of tea with a friend.”

 

How to look after yourself
The level of exercise that’s safe for you may change if your lupus symptoms become more active. If you have a flare of your lupus symptoms, you may need to reduce or stop your exercise activity to prevent damage to inflamed joints and muscles and to avoid fatigue. Although exercise can help to reduce feelings of fatigue, too much exercise could trigger a lupus flare-up. You’ll need to find the right balance and avoid pushing yourself too hard. Check with your doctor to see what level of exercise may be best for you.

“I had to learn to know my limits because I would end up in bed for a couple of days exhausted and hurting if I tried to push myself too much.”

cup-1031774_1920It is vital to pace yourself! When you try to do too much it can increase your feelings of stress and potentially contribute to the disease flaring, which may then create even more stress. Don’t push yourself too hard. You have to find a balance that works for you. It is important to allow your body to rest and recover.

“Pace is a key word when it comes to exercise for me. In the past I exerted too much energy to the point where it didn’t feel beneficial and became counter-productive as I dreaded ever doing exercise.”

Ipain-1015579_1920f you experience severe pain, or stiff and swollen joints, you should avoid or limit activities that contribute to feelings of pain. It is important to take breaks if you need them. It is a good idea to limit exercises that are high-impact, such as jogging, weightlifting and high-impact aerobic exercises. These can place strain and pressure on the joints.

If you do experience pain and joint aggravation, there are a few ways to help relieve this:

  • Joint and muscle pain may be relieved by heat and/or cold application. Try taking a warm shower, using a warm moist towel or soaking in a hot bathtub. These can help soothe aches and pains.
  • Behavioural techniques such as relaxation, meditation, focused breathing, low-impact yoga, and Tai Chi can allow you to draw your mind’s attention away from the pain and to focus on relieving stress and tension. These techniques are safe and easy to do at home and may help you to control your pain rather than suffer through it.
  • Ice or cold applications are advisable only for strained or twisted muscles or injuries.  Follow the RICE (Rest, Ice, Compression, and Elevation) method to relieve pain, reduce swelling, and speed healing. Begin right after the injury occurs and continue for at least 48 hours.

 “I find that taking a hot shower before and after helps somewhat with the pain and achy bones and joints, so it gives me a little energy to move.”

clouds-429228_1920Make sure you protect your skin against the sun if you are exercising outside. High-factor sunscreen and a broad brimmed hat are a good starting point. For more advice about lupus and light sensitivity you can read our factsheet, ‘LUPUS and Light Sensitivity’ HERE and go to the Eclipse section of our website HERE.

 

***Please note that this article is written for informational purposes only and should not be a substitute for professional medical advice or treatment. Do not delay seeking or disregard medical advice based on information here. Always seek the advice of your local family physician or other qualified health professional before starting any new treatment or making any changes to existing treatment. It is also advisable to consult a medical professional before making any changes to diet or starting alternative remedies, which may interact with other medications.***

Thank you so much to everybody who submitted their tips and experiences for this month’s topic. We’re sorry if we weren’t able to use your comment in the article this time.

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