Management Plan
Healthcare Providers You May See On Your Journey
Your team of doctors will help you manage your scleroderma and find the best treatment options for your individual journey. Learn valuable tips on nutrition and exercise to improve your health and well-being.
You can search this site for a scleroderma specialty treatment center nearest to you: Find a Treatment Center
Rheumatologists
A rheumatologist is an internist or pediatrician who received further training in the diagnosis (detection) and treatment of musculoskeletal disease and systemic autoimmune conditions commonly referred to as rheumatic diseases. These diseases can affect the joints, muscles, and bones, causing pain, swelling, stiffness, and potentially cause joint deformities.
Cardiologists
A cardiologist is a specialist who deals with the structure, function, prevention, and treatment of disorders of the heart and vascular system. The field includes the diagnosis and treatment of congenital heart defects, coronary artery disease, vascular disease and heart rhythm abnormalities, and heart failure.
Gastroenterologists
A gastroenterologist is a specialist in the normal function and diseases of the esophagus, stomach, small intestine, colon and rectum, pancreas, gallbladder, bile ducts, and liver.
Pulmonologists
A pulmonologist is a physician who specializes in the respiratory system. From the windpipe to the lungs, if your complaint involves the lungs or any part of the respiratory system, a pulmonologist is the doctor you want to solve the problem. Oxygen may be prescribed in the future by a pulmonologist.
Nephrologists
A nephrologist is a type of doctor who focuses on the diagnosis and treatment of kidney conditions. Nephrologists also receive training to help manage the impact of kidney dysfunction on the rest of the body.
Dentists
A dentist helps you to maintain optimal oral care, a critical component for maintaining your health. Ask local dentists if they have experience working with individuals with scleroderma, especially because of the skin tightening you may experience around your mouth.
Dermatologists
A dermatologist is a specialist who deals with the structure, function, prevention, and treatment of disorders of the skin, including scleroderma. They can help you learn how to best manage digital ulcers and other issues you may be experiencing with your skin. You may see a dermatologist to help with your scleroderma, though they may defer the management of your symptoms to a rheumatologist specializing in scleroderma.
When should you reach out to your physician?
Unusual shortness of breath, persistent cough, fainting, or discomfort on exertion.
Persistent heartburn.
Food blockage when you swallow.
Unexplained weight loss.
A wound or ulceration of the fingertips and knuckles.
Pain or permanent redness of a finger, inflammation, or severe pain regarding finger calcification.
Worsening skin sclerosis.
Occupational and Physical Therapists
It is important to find a therapist who has experience in treating scleroderma. Make sure to ask your doctor for a referral to see either an Occupational or Physical therapist.
The therapist should be someone with whom you can collaborate and who can help you establish clear goals for your treatment. Remember to consider the importance of finding the right therapist - it could make all the difference in your journey toward healing.
What's the difference between occupational and physical therapy?
Physical therapy and occupational therapy are both therapies that help people perform the activities they do every day. However, the approaches physical therapists take differ from those of occupational therapists.
The most notable difference between physical therapists (PTs) and occupational therapists (OTs) is their focus:
PTs focus on healing and strengthening their clients’ bodies and returning them back to normal after an injury. They often focus on walking and mobility.
OTs teach their clients to adapt to their challenges so they can more easily and efficiently perform everyday activities, such as feeding and dressing themselves, caring for kids or pets, and working.
Some OTs are certified hand therapists. These providers specialize in treating issues related to skin, joints, muscles, and tendons in the hands and arms.
You may experience a decline in your walking that significantly affects your ability to move around the world. Discuss your need for walking assistance devices and handicap placards with your PT/OT or a social worker.
Physical and Occupational Therapy
Physical therapy alleviates pain by addressing its root causes and promoting the body's natural healing processes. Through targeted exercises, stretches, and manual techniques, physical therapists work to improve flexibility, strength, and joint mobility, reducing strain on affected areas. They also educate patients on proper posture and body mechanics, empowering them to prevent further injury.
The personalized nature of physical therapy and occupational therapy allows for tailored interventions, promoting long-term pain relief and enhancing overall physical well-being.
Occupational therapy is a rehabilitation specialty that can teach you how to manage symptoms to continue living your best life. For example, occupational therapists can make recommendations for modifying tasks, provide assistive technology, teach energy conservation techniques, help you manage pain, show you how to improve and maintain strength and mobility, and share strategies for protecting your skin during daily activities like washing dishes. Certified hand therapists also can help with hand and arm function specifically.
Additionally, therapeutic modalities such as heat, ice, and electrical stimulation may be employed to manage pain and inflammation.
Benefits of Occupational and Physical Therapy
Relieve pain
Ask your physical or occupational therapists about ways to reduce pain. You can make changes in your daily routine to help alleviate pain.
Improve muscle strength
Strengthening muscles is crucial for individuals of all ages, and everyone should prioritize it.
Improve mobility
Completing mild exercises to improve mobility can also improve posture and range of motion, preventing muscle loss and reducing pain.
Modifications to everyday tasks
It is essential to recognize that you may experience fatigue and need to pace yourself. When possible, break up tasks into smaller sections. Breaking up tasks can help manage the overwhelming feeling and fatigue when completing a task.
Assistive technology
Devices such as can openers and button hooks can create ease when completing tasks, especially fine motor tasks with your hands. Your therapist can assist you in discovering adaptive tools that can benefit you.
Management of the skin
Your therapists can offer various therapeutic techniques and methods to protect your skin.
Nutrition and Exercise Recommendations
Recommendations for nutrition when living with scleroderma
Focus on small meals frequently throughout the day.
Add antioxidant-rich, anti-inflammatory herbs and spices to foods.
Focus on whole foods, limiting processed food with artificial ingredients.
Gastroparesis (slow food movement through the intestines) requires a different approach to managing nutrition.
Recommendations for exercises when living with scleroderma
Add strength training, stretching, and cardio to your exercise plan. For more information on scleroderma exercises, please visit the Self-Manage Scleroderma website. Sign up for free to access all the modules, including the comprehensive exercise module.
Some additional tips related to keep moving throughout the day
Seated arm exercises
Seated marching
Marching in place while standing
Standing up every hour
Toe taps
Seated leg lifts – straighten one leg in front of you while you are seated and hold for a few seconds
Desk stretches that focus on your neck, shoulders, back, and hips
Do some chores! Not only do you get to cross things off your to-do list, but you get the health benefits, too.