Exercise and IBM

The single most important thing you can do for yourself — safe, effective exercise guidelines for every stage of IBM

Why Exercise Matters

Exercise is currently the only proven management strategy for IBM. This is not a recommendation to "stay active" — it is a medical necessity. Research confirms that exercise is safe for IBM patients and does not accelerate disease progression.

The inactivity penaltyMuscles begin losing strength within 24-48 hours of inactivity. Maximum strength is lost within 6 weeks of inactivity. For someone with IBM, inactivity-related loss compounds the disease-related weakness — making it even harder to maintain function.

The goal of exercise with IBM is not to build new muscle (the disease makes that extremely difficult). The goal is to maintain what you have for as long as possible, improve balance and coordination, and preserve your ability to perform daily activities.

Safe Exercise Types

1

Walking

The simplest, most accessible exercise. Walk at your own pace — there is no target speed or distance. Start with whatever you can do and gradually increase duration. Walking improves cardiovascular health, maintains leg strength, and helps with balance. Use a cane or walker if needed — the exercise benefit still counts.

2

Aquatic Therapy (Water Exercise)

Water supports your body weight, reducing strain on weak muscles while providing natural resistance. Pool temperatures of 83-88°F are ideal. Aquatic therapy can include walking in water, leg lifts, arm movements, and gentle swimming. Many patients find this the most enjoyable form of exercise.

3

Light Resistance Training

Resistance bands (Therabands) and very light weights (1-3 lbs) can help maintain muscle strength. Focus on slow, controlled movements. Avoid heavy weights or high-repetition sets that cause significant fatigue. The TMA's IBM Home Exercise Program includes specific resistance exercises.

4

Balance Training

IBM patients have 2.5x higher fall risk than other inflammatory myopathy patients. Balance training is critical for fall prevention. Practice standing on one foot (near a wall or counter for support), walking heel-to-toe, and shifting weight between legs. Tai Chi and gentle yoga can also improve balance.

5

Hand and Finger Exercises

Hand weakness affects everyday tasks like holding utensils, turning keys, and buttoning shirts. Squeeze a soft ball or putty (start with the lowest resistance), practice picking up small objects, and do finger extension exercises with a rubber band. The TheraPutty hand exercise program is a good starting point.

6

Stretching and Flexibility

Gentle stretching helps prevent contractures (permanent tightening of muscles and tendons). Focus on stretching the quadriceps, hip flexors, hamstrings, calves, and forearm muscles. Hold each stretch for 20-30 seconds without bouncing.

The TMA IBM Home Exercise Program

The Myositis Association has developed a structured 16-week home exercise program specifically designed for IBM patients. The program is divided into phases:

  • Weeks 1-4: Foundation phase — gentle exercises to establish a routine
  • Weeks 5-8: Building phase — gradually increasing intensity and duration
  • Weeks 9-12: Strengthening phase — more challenging exercises for maintaining function
  • Weeks 13-16: Maintenance phase — sustaining gains with a regular routine

The program includes both upper and lower body exercises, with modifications for different ability levels. Download the free program from myositis.org.

How to get the programVisit myositis.org and search for "IBM Home Exercise Program." The program is available as a free PDF download. Consider working with a physical therapist to personalize the exercises for your specific abilities and limitations.

How to Start Exercising

1

Talk to Your Doctor First

Before starting any exercise program, discuss it with your neurologist or rheumatologist. Let them know about your exercise plans so CK elevations from exercise aren't mistaken for disease activity.

2

Start with One or Two Exercises

Don't try to do everything at once. Pick one or two exercises and do them daily for two weeks. Then add another exercise. This gradual approach prevents overexertion and builds a sustainable routine.

3

Set Realistic Goals

The goal is consistency, not intensity. Five minutes of exercise every day is better than one hour once a week. Track what you do — even a simple notebook helps you see progress and stay motivated.

4

Warm Up and Cool Down

Always warm up before exercise (5 minutes of gentle movement) and cool down after (5 minutes of stretching). This reduces the risk of muscle soreness and injury.

Warning Signs — When to Stop

Stop exercising and consult your doctor if you experience:
  • Muscle soreness that lasts more than 60 minutes after exercise
  • New weakness in a muscle group that wasn't weak before
  • Swelling, redness, or heat in a joint or muscle
  • Chest pain, dizziness, or shortness of breath during exercise
  • Pain that gets worse during exercise (mild discomfort is normal, sharp pain is not)

During flares (periods of increased disease activity), limit exercise to gentle walking and range-of-motion exercises. Don't stop moving entirely — just reduce intensity until the flare subsides.

Exercise at Every Stage

Early Stage (Years 0-5)

Focus on maintaining strength and building good habits. Walking, aquatic therapy, and light resistance training are all appropriate. This is the best time to establish an exercise routine — it's easier to maintain than to rebuild.

Middle Stage (Years 5-10)

Adapt exercises to your current abilities. Use seated exercises if standing is difficult. Increase balance training as fall risk rises. Consider working with a physical therapist to modify the TMA program for your needs.

Advanced Stage (10+ Years)

Focus on range-of-motion exercises to prevent contractures. Seated and lying-down exercises are appropriate. Even small movements help maintain circulation and prevent complications of immobility.

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