Understanding the Physiatrist’s Role in FSHD Care

By Ashley Ferreira 

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Many patients have never heard of a physiatrist, and when they do, they ask themselves, “What do they do?” There are many different healthcare professionals that are part of the FSHD care team, but the role of the physiatrist is one that, although not often heard of, can play a critical role in the quality of life of patients with FSHD. 

In the July FSHD University webinar, Dr. Nassim Rad, a board-certified physiatrist, introduced patients and caregivers to this vital medical specialty. Physiatrists are physicians trained in physical medicine and rehabilitation. Their focus isn’t on diagnosing FSHD—that’s the role of a neurologist—but on helping people function better, manage symptoms like pain and fatigue, and maintain independence as the disease progresses. 

What Can a Physiatrist Do for You? 

A physiatrist evaluates your ability to perform everyday activities—walking, dressing, cooking, or using the bathroom—and identifies where adaptations or supports can make life easier. They assess balance, mobility, breathing, muscle strength, posture, and fall risk. From there, they create a personalized plan that might include: 

• Physical or occupational therapy 
• Braces or orthotics 
• Adaptive equipment or mobility aids 
• Pain and fatigue management 
• Home modifications or strategies to conserve energy 

Physiatrists work hand-in-hand with other specialists—neurologists, physical therapists, orthotists, and even palliative care providers—to ensure the care plan is holistic and centered on the patient’s goals and needs. 

Seeing a physiatrist early in your FSHD journey can help you stay active and independent for as long as possible. Their expertise in preserving and improving physical function makes them a key player in supporting your quality of life. Whether you’re navigating a new diagnosis or adjusting to changes in mobility, their guidance can help you adapt and thrive. 

How to Find a Physiatrist Who Knows FSHD 

To find a physiatrist familiar with FSHD or neuromuscular disorders, try the FSHD Society’s Care Connector—a searchable directory of providers with FSHD knowledge. You can also ask your neurologist or primary care physician for a referral, especially if you’re struggling with day-to-day function, pain, or fatigue. 
The physiatrist may not be the most well-known specialist in your care team, but their role is essential. By focusing on your function, independence, and comfort, they can help you live better with FSHD. If you haven’t seen a physiatrist yet, this might be the right time to consider adding one to your care team.