Early Stage Tips

Practical advice for the first years after diagnosis — building a foundation for living well with IBM

Exercise and Physical Therapy

Exercise is currently the only treatment recommendation for IBM. Research confirms exercise is safe and can improve quality of life. The key is finding the right balance.

1

Start Slow and Smart

Begin with TMA's IBM Home Exercise Program (myositis.org). Start with one or two exercises and progress gradually over 6-12 weeks. Walking is always safe at your own pace — it's the easiest way to stay active.

2

Listen to Your Body

Muscles lose strength within 24-48 hours of inactivity. If muscle soreness hinders daily activities, you've done too much. 30-60 minutes of recovery after exercise is normal; longer recovery means dial back intensity.

3

Best Exercise Types

Walking (adjust to ability), aquatic therapy (water supports weight), light resistance training, balance training (critical for fall prevention), and hand/finger exercises.

4

Find a Myositis-Experienced PT

TMA maintains a directory of myositis-experienced physical therapists at myositis.org. A knowledgeable PT can tailor your program and prevent injury.

Energy Conservation

IBM causes fatigue because weakened muscles require surrounding muscles to work harder. Energy conservation helps you accomplish more while managing fatigue.

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Prioritize Tasks

Identify what must be done today vs. what can wait. Plan important activities during your best energy times (usually morning).

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Pace Yourself

Alternate activity with rest periods. Don't try to do everything at once. Sit when possible — use a stool for kitchen tasks, shower chair, or grabber tools to avoid bending.

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Delegate and Simplify

Let family or friends handle heavy tasks. Batch errands, prepare meals in advance, use online shopping and delivery services.

Workplace Accommodations

The Americans with Disabilities Act (ADA) requires reasonable accommodations for qualifying conditions. Don't wait until limitations become severe.

  • Request accommodations early: ergonomic tools, voice-to-text software, modified schedules, or remote work options
  • Document your limitations — keep records of specific activities that are difficult
  • You are not required to disclose your diagnosis, but explaining functional limitations helps secure accommodations
  • Consider vocational rehabilitation: state programs can help with job modifications or career transitions

Finding Specialists

Building the right medical team early is crucial for optimal management.

  • Neurologist or Rheumatologist: Seek one experienced with inflammatory myopathies
  • Speech-Language Pathologist (SLP): Essential for evaluating swallowing — don't wait for symptoms
  • Physical Therapist: Use TMA's directory of myositis-experienced PTs
  • Occupational Therapist: Can recommend adaptive strategies early
Use TMA's Find a Doctor toolThe Myositis Association maintains a directory at myositis.org to help you locate specialists experienced with IBM in your area.

Psychological Adjustment

Receiving a diagnosis of a rare, progressive disease is life-changing. These strategies can help you cope:

  • Join a support group: TMA offers in-person and virtual groups, including IBM-specific and affinity groups (e.g., Men Managing Myositis)
  • Use TMA's Community Forum: Password-protected online space for IBM patients and caregivers
  • Consider counseling: A therapist experienced with chronic illness can help process grief, anxiety, or depression
  • Educate yourself: Knowledge reduces fear — read about IBM, attend webinars, ask questions
  • Connect with others: Research shows social support improves outcomes

Nutrition

  • Eat a balanced diet rich in fruits, vegetables, lean proteins, and whole grains
  • Maintain adequate protein intake to support muscle health
  • Stay well-hydrated, especially if swallowing difficulties develop
  • Monitor weight — unintentional weight loss may indicate swallowing problems
  • Consider consulting a registered dietitian familiar with neuromuscular diseases