Exercising Safely with Paget’s Disease: Your Comprehensive Guide

Paget’s disease of bone is a chronic condition that disrupts the body’s normal bone remodeling process, leading to enlarged, misshapen, and weakened bones. While it might seem counterintuitive to exercise with a condition that affects bone integrity, physical activity is not only possible but also crucial for managing symptoms, improving mobility, and enhancing overall quality of life. The key lies in understanding how to exercise safely and effectively, minimizing risks while maximizing benefits. This guide provides an in-depth, actionable framework for individuals with Paget’s disease to engage in physical activity with confidence.

Understanding the Foundation: Safety First

Before lacing up your shoes or grabbing a resistance band, it’s imperative to grasp the fundamental principles of safe exercise with Paget’s disease. The primary concerns are preventing fractures, minimizing pain, and avoiding undue stress on affected bones.

Prioritize Medical Consultation

Your first and most important step is a thorough consultation with your healthcare provider – ideally, a specialist familiar with Paget’s disease, such as an endocrinologist or an orthopedic surgeon. This isn’t a mere formality; it’s a critical pre-screening that will inform every aspect of your exercise regimen.

What to Discuss: Be prepared to discuss your specific symptoms, the location and severity of bone involvement (identified through imaging like X-rays or bone scans), any pain levels, and your current physical capabilities.
Medical Clearance: Obtain explicit medical clearance before starting any new exercise program. Your doctor can advise on specific movements or activities to avoid based on your individual bone health.
Medication Review: Discuss how your current medications (e.g., bisphosphonates for Paget’s disease, pain relievers) might influence your exercise capacity or precautions. Some medications can cause fatigue or gastrointestinal issues, which might affect your willingness or ability to exercise.
Referral to Specialists: Your doctor might recommend a referral to a physical therapist or an exercise physiologist who has experience working with individuals with bone disorders. These professionals can conduct a personalized assessment and design a tailored exercise plan.

Concrete Example: Before I started my walking program, my doctor reviewed my recent bone scan which showed significant Pagetic involvement in my right tibia. She advised me to use a cane for balance initially and to avoid any high-impact activities like running or jumping that would put direct stress on that leg.

Listen to Your Body

This isn’t just a cliché; it’s a non-negotiable rule when exercising with Paget’s disease. Your body will provide critical feedback, and ignoring it can lead to injury.

Pain is a Warning Signal: Distinguish between muscle soreness (normal after exercise) and joint or bone pain. Sharp, sudden, or persistent pain is a clear sign to stop the activity immediately.
Fatigue Management: Paget’s disease can sometimes cause fatigue. Monitor your energy levels and adjust the intensity or duration of your workouts accordingly. It’s better to do a shorter, less intense workout than to push yourself into exhaustion.
Progressive Overload, Cautiously Applied: While the principle of progressive overload (gradually increasing the demands on your body) is fundamental to exercise, with Paget’s disease, it must be applied with extreme caution. Small, incremental increases are key.

Concrete Example: During a gentle cycling session, I felt a dull ache in my lower back, an area where my Paget’s is active. Instead of pushing through, I stopped, rested, and then tried some gentle stretches. The next day, I reduced my cycling duration and focused more on proper posture to prevent recurrence.

Warm-Up and Cool-Down: Non-Negotiable Rituals

Often overlooked, effective warm-up and cool-down routines are vital for preparing your body for activity and aiding recovery, especially with fragile bones.

Warm-Up (5-10 minutes): This should involve light aerobic activity and dynamic stretches. The goal is to increase blood flow to muscles and joints, improve flexibility, and gently raise your heart rate.
- Examples: Gentle walking in place, arm circles, leg swings (controlled, not ballistic), torso twists, marching on the spot.
Cool-Down (5-10 minutes): This involves static stretches held for 15-30 seconds, focusing on the muscles used during your workout. This helps improve flexibility, reduce muscle soreness, and promote relaxation.
- Examples: Hamstring stretches, quadriceps stretches, triceps stretches, calf stretches. Hold each stretch gently, without bouncing.

Concrete Example: Before my water aerobics class, I always spend 7 minutes doing arm circles, marching in place, and gentle knee bends in the shallow end of the pool. Afterward, I spend another 7 minutes holding static stretches like a wall push-up for my calves and a gentle hamstring stretch using the pool edge.

Pillar 1: Low-Impact Aerobic Exercise

Aerobic exercise strengthens your cardiovascular system, improves endurance, helps manage weight (reducing stress on bones), and can boost mood. For individuals with Paget’s, the emphasis is on low-impact activities to minimize stress on bones.

Walking: The Accessible Powerhouse

Walking is often the most accessible and effective low-impact aerobic exercise. It’s weight-bearing, which is beneficial for bone health, but gentler than running.

Start Slow and Short: Begin with short durations (e.g., 10-15 minutes) at a comfortable pace.
Gradual Progression: Increase duration by 5 minutes each week, or increase distance by a small amount. Focus on consistency.
Pace: Aim for a brisk pace where you can still hold a conversation but are slightly breathless.
Footwear: Invest in supportive, well-cushioned athletic shoes. Replace them regularly (every 6-12 months, depending on usage).
Surface: Walk on softer surfaces like grass, dirt paths, or tracks if available. Avoid hard concrete or asphalt initially, especially if you have lower limb involvement.
Walking Aids: If you experience balance issues or pain, use walking aids like a cane or trekking poles. These can offload weight from affected limbs and improve stability.

Concrete Example: When I started my walking program, I could only manage 15 minutes around my block. After a month, I was comfortably walking 30 minutes daily. I always wear my cushioned walking shoes and stick to the park’s gravel paths instead of the pavement around my house.

Water-Based Exercise: Buoyancy Benefits

Water exercise is ideal for individuals with significant pain or bone fragility, as the buoyancy of water reduces stress on joints and bones.

Water Walking/Jogging: Walk or “jog” in the shallow or deep end of a pool. The water resistance provides a gentle full-body workout.
Aqua Aerobics: Many gyms and community centers offer water aerobics classes specifically designed for older adults or those with joint issues. These classes often incorporate various movements, including gentle kicks, arm movements, and core exercises.
Swimming: If you enjoy swimming, it’s an excellent non-weight-bearing cardiovascular exercise. Choose strokes that don’t aggravate any specific bone involvement. For example, if you have neck or shoulder Paget’s, adjust your stroke or avoid certain movements.

Concrete Example: My favorite exercise is aqua aerobics. The water supports my joints, and I can move freely without the impact I’d feel on land. I particularly like the deep-water walking exercises, which give me a good workout without putting any pressure on my hips, where I have Paget’s.

Stationary Cycling: Controlled and Consistent

Stationary cycling (recumbent or upright) offers a controlled environment for cardiovascular exercise.

Recumbent Bikes: Often preferred as they provide back support and distribute weight more evenly, reducing pressure on the spine and hips.
Resistance: Start with very low resistance and gradually increase as your endurance improves. The goal is smooth, fluid pedaling, not heavy straining.
Posture: Maintain good posture throughout the exercise to avoid unnecessary strain on your back or neck.
Duration: Begin with 15-20 minutes and gradually work up to 30-45 minutes.

Concrete Example: I use a recumbent stationary bike three times a week for 25 minutes. I keep the resistance low, focusing on a consistent, smooth pedal stroke. It’s perfect for a rainy day when I can’t walk outside, and it doesn’t bother my knees at all.

Pillar 2: Strength Training

Building and maintaining muscle strength is crucial for supporting bones, improving balance, enhancing functional independence, and reducing the risk of falls. With Paget’s disease, the emphasis is on controlled movements and appropriate resistance.

Understanding Bone Response

While the goal isn’t to put excessive stress on affected bones, gentle, progressive resistance can help stimulate bone health and improve the strength of surrounding muscles, providing better support. However, high-impact or sudden, jarring movements must be avoided.

Bodyweight Exercises: Your Starting Point

Bodyweight exercises are excellent for beginners as they use your own body as resistance, making them highly controllable.

Wall Push-Ups: Stand facing a wall, about arm’s length away. Place your hands on the wall at shoulder height. Lean towards the wall, bending your elbows, then push back to the starting position. This strengthens chest and arm muscles without straining bones.
Chair Squats: Stand in front of a sturdy chair. Slowly lower yourself as if to sit, then stand back up. Keep your back straight and use your legs. This strengthens quadriceps and glutes. If pain occurs, reduce the depth of the squat or stop.
Calf Raises: Hold onto a sturdy support (wall, back of a chair) for balance. Slowly raise yourself onto the balls of your feet, then lower down. This strengthens calf muscles and aids ankle stability.
Bridging: Lie on your back with knees bent and feet flat on the floor, hip-width apart. Engage your core and glutes, then slowly lift your hips off the floor until your body forms a straight line from shoulders to knees. Hold briefly, then lower slowly. This strengthens glutes and hamstrings.

Concrete Example: I do 3 sets of 10 wall push-ups every other day. It’s a great way to strengthen my upper body without putting any pressure on my wrist, which sometimes aches. I also do chair squats, but I only go down halfway to avoid stressing my knees.

Resistance Bands: Versatile and Gentle

Resistance bands offer variable resistance and are lightweight, portable, and ideal for controlled movements.

Band Rows: Loop a resistance band around a sturdy object (e.g., a pole, door anchor) or have someone hold it. Hold the ends of the band and pull them towards your body, squeezing your shoulder blades together. This strengthens back muscles.
Band Chest Press: Wrap a resistance band around your back, holding an end in each hand. Extend your arms forward as if pushing, then slowly return. This targets chest muscles.
Band Leg Press (Seated): Sit in a chair. Loop a resistance band around your ankles. Extend one leg forward against the band’s resistance, then slowly return. Alternate legs. This strengthens quadriceps.
Band Abduction/Adduction: For hip strength, lie on your side with a band around your ankles and lift the top leg (abduction) or sit with a band around your knees and press knees outward (adduction).

Concrete Example: I use a light resistance band for shoulder external rotations. I loop it around my hand and pull outwards, keeping my elbow tucked in. It helps strengthen the small muscles around my shoulder without putting direct strain on my humerus, where I have some Paget’s activity.

Light Weights: Incremental Progress

Dumbbells or ankle weights can be used, but always start with very light weights (e.g., 1-2 pounds) and focus on proper form.

Bicep Curls: Hold a light dumbbell in each hand, palms facing forward. Slowly curl the weight towards your shoulders, keeping elbows tucked in, then lower slowly.
Triceps Extensions (Overhead): Hold a light dumbbell with both hands. Extend it overhead, then slowly lower it behind your head, bending your elbows, then extend back up.
Lateral Raises: Hold a light dumbbell in each hand, arms at your sides. Slowly raise your arms out to the sides to shoulder height, keeping a slight bend in your elbows, then lower slowly.
Leg Lifts (Seated or Lying): While seated or lying down, attach light ankle weights and perform leg lifts (straight leg raises).

Concrete Example: I use 1-pound dumbbells for bicep curls and overhead triceps extensions. I do 2 sets of 12 repetitions for each exercise. It feels good to build some arm strength without putting any pressure on my spine.

Key Considerations for Strength Training

Form Over Weight: Always prioritize perfect form over lifting heavier weights. Improper form significantly increases the risk of injury.
Controlled Movements: Avoid jerky, explosive movements. Lift and lower weights slowly and deliberately.
Breathing: Exhale during the exertion phase (lifting) and inhale during the recovery phase (lowering). Do not hold your breath.
Repetitions and Sets: Start with 1-2 sets of 8-12 repetitions for each exercise. Gradually increase sets (to 3) or repetitions as you get stronger, but only if comfortable and pain-free.
Rest: Allow at least 48 hours of rest between strength training sessions for the same muscle group. This allows muscles to recover and rebuild.

Pillar 3: Balance and Flexibility

Balance and flexibility are often overlooked but are paramount for individuals with Paget’s disease, as they directly impact fall prevention and overall mobility. Bones affected by Paget’s can be more fragile, making falls particularly dangerous.

Balance Exercises: Preventing Falls

Impaired balance can be a significant concern, especially with lower limb or spinal involvement. Balance exercises improve proprioception (your body’s awareness in space) and strengthen stabilizing muscles.

Standing on One Leg (with support): Start by holding onto a sturdy counter or wall. Lift one foot off the ground for a few seconds, then switch legs. As you improve, gradually decrease your reliance on support.
Heel-to-Toe Walk: Walk in a straight line, placing the heel of your front foot directly in front of the toes of your back foot. This challenges your balance in a linear fashion.
Tai Chi or Qigong: These ancient Chinese practices involve slow, flowing movements and deep breathing, which are excellent for improving balance, flexibility, and mindfulness. They are low-impact and gentle, making them ideal for individuals with bone conditions. Look for classes specifically designed for beginners or older adults.
Standing with Feet Close Together: Simply stand with your feet together, focusing on maintaining stability. Progress to standing with eyes closed (only if you have strong balance and a spotter nearby).

Concrete Example: Every morning, I practice standing on one leg while brushing my teeth. I hold onto the counter at first, but now I can stand for 30 seconds on each leg without holding on. It has made a noticeable difference in my stability when walking on uneven ground.

Flexibility Exercises: Improving Range of Motion

Flexibility exercises maintain and improve the range of motion in your joints, reducing stiffness and improving overall movement patterns.

Gentle Stretches: Incorporate static stretches as part of your cool-down routine. Hold each stretch for 15-30 seconds, feeling a gentle pull, not pain.
- Neck Stretches: Gently tilt your head to one side, bringing your ear towards your shoulder. Hold. Repeat on the other side.
- Shoulder Blade Squeezes: Sit or stand tall. Squeeze your shoulder blades together as if trying to hold a pencil between them. Hold for 5-10 seconds.
- Hamstring Stretch: Sit on the floor with one leg extended. Loop a towel around the ball of your foot and gently pull your toes towards you, keeping your back straight.
- Calf Stretch: Stand facing a wall, place your hands on the wall. Step one foot back, keeping that leg straight and heel on the ground. Lean forward until you feel a stretch in your calf.
Yoga (Modified): Gentle, restorative, or chair yoga can be beneficial. Always choose classes led by instructors who understand modifications for specific health conditions. Avoid poses that put direct pressure on affected bones or involve extreme twists or inversions.

Concrete Example: I do gentle neck stretches daily, especially on days when my Paget’s in my cervical spine feels a bit stiff. I also regularly stretch my hamstrings and calves, which helps me feel more limber when walking.

Key Practical Considerations for Every Workout

Beyond the specific exercises, several overarching practical considerations will ensure your exercise journey with Paget’s disease is safe and successful.

Hydration and Nutrition

Hydration: Drink plenty of water before, during, and after exercise. Dehydration can lead to fatigue and muscle cramps.
Nutrition: Fuel your body with a balanced diet rich in calcium and vitamin D, essential for bone health. Consult your doctor or a registered dietitian for personalized dietary advice regarding Paget’s disease.

Concrete Example: I always carry a water bottle with me during my walks and sip from it regularly. I also make sure my diet includes dairy and leafy greens for bone health, as recommended by my doctor.

Proper Form and Technique

This cannot be overemphasized. Incorrect form is the leading cause of exercise-related injuries.

Learn from Professionals: If possible, work with a physical therapist or certified exercise physiologist initially. They can teach you the correct form for each exercise and identify any compensatory movements you might be making.
Use a Mirror: When exercising at home, use a mirror to check your posture and form.
Focus on the Movement: Concentrate on the muscles you are working and the quality of the movement, rather than just going through the motions.

Concrete Example: When I first started chair squats, I tended to lean forward too much. My physical therapist showed me how to keep my chest up and engage my core. Practicing in front of a mirror helped me correct my form quickly.

Progression and Consistency

Slow and Steady: Progress gradually. Increasing intensity, duration, or resistance too quickly is a common mistake that can lead to injury.
Consistency is Key: Regular exercise, even in short bursts, is more effective than sporadic, intense workouts. Aim for at least 30 minutes of moderate-intensity activity most days of the week, broken into smaller chunks if necessary.
Schedule It: Treat exercise like any other important appointment. Block out time in your calendar.

Concrete Example: Instead of trying to do a 45-minute walk right away, I committed to 20 minutes every morning. After two weeks of consistent 20-minute walks, I slowly increased it by 5 minutes each week until I reached my 45-minute goal.

Monitoring for Symptoms

Pain Levels: Regularly assess your pain levels before, during, and after exercise. Use a simple 0-10 scale. If pain increases significantly or lingers, reassess your exercise routine.
New Symptoms: Be vigilant for any new aches, pains, swelling, or changes in bone shape. Report these to your doctor promptly.
Fatigue: Monitor your energy levels. If you consistently feel exhausted after exercise, you might be overdoing it.

Concrete Example: I keep a small journal where I note my exercise duration, intensity, and any pain I felt. If my knee pain is above a 3/10, I know to reduce the intensity of my activity the next day or switch to something like swimming.

Choosing the Right Environment

Safe Space: Ensure your exercise environment is safe, well-lit, and free of tripping hazards.
Temperature: Avoid exercising in extreme heat or cold, especially if you have other health conditions.
Social Support: Consider exercising with a friend, family member, or in a supervised group setting. This can provide motivation and a sense of accountability.

Concrete Example: I joined a local walking group, and having companions makes my daily walks much more enjoyable and keeps me accountable, even on days I might not feel like it.

When to Adjust or Stop: Red Flags

While exercise is beneficial, there are clear signs that you need to modify your routine or seek immediate medical attention.

New or Worsening Bone Pain: This is the most critical red flag. Do not ignore new, sharp, or persistent pain in an area affected by Paget’s, or any new pain in an area not previously symptomatic.
Sudden Swelling or Bruising: These could indicate a fracture or other injury.
Difficulty Bearing Weight: If you suddenly struggle to put weight on a limb, stop exercising and seek medical advice.
Persistent Fatigue: If exercise consistently leaves you feeling drained for hours or days, you might be overtraining or your Paget’s disease requires re-evaluation.
Dizziness or Lightheadedness: Stop immediately and rest. If symptoms persist, seek medical attention.
Changes in Bone Shape or Deformity: Report any noticeable changes to your doctor immediately.

Concrete Example: Last month, after a particularly long walk, I felt a new, sharp pain in my left shin, an area I knew had Paget’s. I immediately stopped walking, rested, and called my doctor. She advised me to get an X-ray to rule out a stress fracture, which thankfully it wasn’t, but it taught me to pay even closer attention to my body’s signals.

Conclusion

Exercising with Paget’s disease is not just about symptom management; it’s about reclaiming your independence, enhancing your physical capabilities, and significantly improving your quality of life. By understanding the principles of low-impact aerobic activity, controlled strength training, and essential balance and flexibility exercises, you can create a safe, effective, and sustainable fitness regimen. Always remember to collaborate closely with your healthcare team, listen intently to your body’s signals, and prioritize safety above all else. Your journey to active living with Paget’s disease is not just possible, it’s empowered by informed choices and consistent effort.