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Management & Treatment: Building Your Care Strategy

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While there is no cure for FSHD, a multidisciplinary care team can help you manage symptoms and preserve mobility. Safe, moderate-intensity exercise, targeted physical therapy, and procedures like scapular fixation surgery can significantly improve your daily function and quality of life.

Key Takeaways

  • • Managing FSHD requires a multidisciplinary team led by a neurologist, including physical therapists, orthopedists, and mental health professionals.
  • • Moderate-intensity aerobic and strength training is safe for FSHD and helps maintain muscle function without causing accelerated damage.
  • • Scapular fixation surgery can help restore arm lifting ability by anchoring the shoulder blade to the ribs.
  • • Chronic pain and fatigue affect a majority of patients and can be managed through physical therapy, pacing strategies, and assistive devices.
  • • Experimental therapies targeting the DUX4 protein, including gene editing and siRNA, are actively being investigated in clinical trials.

While there is currently no cure for FSHD, managing the condition is a proactive process focused on preserving your function, managing symptoms, and improving your quality of life. Modern management is built on a “multidisciplinary” approach, meaning you are supported by a team of experts who address the different ways FSHD can affect your body [1][2]. For information about monitoring the rest of your body over time, see Protecting Your Whole Body.

The Core Management Team

A comprehensive care strategy typically involves several specialists working together:

  • Neurologist: Often the “quarterback” of your care, specializing in neuromuscular diseases [3].
  • Physical Therapist (PT) & Occupational Therapist (OT): A PT helps design safe exercise programs to preserve mobility, while an OT provides practical strategies and tools for completing activities of daily living (like reaching or dressing) [4][3].
  • Psychologist / Social Worker: Coping with the grief of progressive disability, including the loss of facial expressions (which affects social interaction) and mobility, carries a massive emotional toll. Working with a mental health professional or joining an FSHD support group is a critical part of comprehensive care.
  • Orthopedist: Specializes in bone and joint issues, particularly for shoulder stabilization or foot drop [3].
  • Pulmonologist: Monitors your breathing and lung function, which is especially important in more severe cases [5][6].
  • Ophthalmologist & Audiologist: Provide baseline screenings for retinal health and hearing, primarily for early-onset or severe classic cases [7][5].

Exercise: Safe and Necessary

One of the most important things you can do for your health is to stay active. Research has shown that moderate-intensity exercise is safe and does not accelerate muscle damage in FSHD [8][9].

  • Aerobic Training: Activities like walking, swimming, or cycling at a moderate pace can improve your overall fitness and stamina [8][5].
  • Strength Training: Combined programs that include light resistance training can help maintain muscle mass and have even been shown to help with muscle “regeneration” markers [9].
  • The Golden Rule: Exercise should be “low-to-moderate.” Avoid pushing yourself to the point of extreme pain or total exhaustion, as “overwork weakness” can occur if muscles are stressed too far [5].

Scapular Fixation Surgery

For patients with significant “scapular winging” (where the shoulder blade sticks out and makes lifting the arm difficult), a surgical procedure called Scapulothoracic Arthrodesis (scapular fixation) may be an option [10].

  • The Goal: The surgery involves attaching the shoulder blade to the ribs to provide a stable “anchor” [11][10].
  • Why It Works: FSHD characteristically spares the deltoid muscle (the large muscle on top of the shoulder) while weakening the muscles underneath it. Once the shoulder blade is anchored, the healthy deltoid finally has the leverage it needs to lift your arm forward and outward [10][12].
  • Outcomes: Most patients report high satisfaction and improved ability to perform daily tasks, though the surgery involves a significant recovery period and potential risks like hardware failure or non-union [13][10].

Managing Pain and Fatigue

Pain and fatigue are among the most common and disruptive symptoms of FSHD [14][15].

  • Pain: Chronic musculoskeletal pain (often in the back or shoulders) affects about 71% of patients [14]. Management may include specialized physical therapy, anti-inflammatory medications, or assistive devices like braces to take the strain off joints [5].
  • Fatigue: This is often a combination of the body working harder to move and the underlying disease process [15]. Pacing yourself—breaking tasks into smaller parts and allowing for rest—is a key strategy [4].

The Future: DUX4-Targeted Therapies

While there is no “off-the-shelf” medicine to stop FSHD yet, the field is moving quickly. Scientists are testing several types of disease-modifying therapies designed to silence the DUX4 protein [16][17]. While a recent large Phase 3 trial for a drug called losmapimod did not meet its primary goals, it was shown to be safe, and several other “next-generation” therapies (like siRNA and gene editing) are currently in various stages of development [18][17][19].

Frequently Asked Questions

Is it safe to exercise if I have FSHD?
Yes, moderate-intensity aerobic and strength training is safe and highly recommended for people with FSHD. Staying active helps maintain muscle mass and stamina, but you should avoid exercising to the point of extreme pain or exhaustion to prevent overworking your muscles.
What is scapular fixation surgery for FSHD?
Scapular fixation, or scapulothoracic arthrodesis, is a surgery that anchors a protruding shoulder blade to the ribs. Because FSHD typically spares the large deltoid muscle on top of the shoulder, securing the shoulder blade gives this healthy muscle the leverage it needs to help you lift your arm.
Are there any targeted treatments or cures for FSHD?
While there is currently no cure for FSHD, scientists are actively developing disease-modifying therapies that target the DUX4 protein responsible for the condition. Several next-generation treatments, including gene editing and siRNA therapies, are currently being tested in clinical trials.
How can I manage chronic pain and fatigue from FSHD?
Managing pain and fatigue often involves a combination of physical therapy, pacing your daily activities to allow for rest, and using supportive devices like braces. Your doctor may also recommend anti-inflammatory medications or specialized exercises to reduce strain on your joints.
Which doctors should be on my FSHD care team?
A comprehensive FSHD care team is usually led by a neurologist who specializes in neuromuscular diseases. Depending on your symptoms, your team should also include physical and occupational therapists, an orthopedist, a pulmonologist, and mental health professionals.

Questions for Your Doctor

  • • Can you recommend a physical therapist who has specific experience working with FSHD or other muscular dystrophies?
  • • Based on the weakness in my shoulders, am I a potential candidate for scapular fixation surgery, and what are the realistic functional goals?
  • • How can we coordinate my care between my neurologist, physical therapist, and any other specialists I might need?
  • • Are there any upcoming clinical trials for DUX4-targeted therapies that I should be tracking?
  • • What are my options for managing chronic pain and fatigue that go beyond over-the-counter medications?

Questions for You

  • • What are my most important physical goals right now (e.g., walking further, being able to reach high shelves, or reducing daily pain)?
  • • How much time and energy am I realistically able to commit to a regular exercise or physical therapy program?
  • • Who in my life can help me coordinate my appointments and support me through recovery if I choose to have surgery?

Want personalized information?

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References

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This page provides general information about FSHD management and treatment strategies. It does not replace professional medical advice, so always consult your neurologist and care team before starting new exercises or considering surgery.

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