Initial Diagnosis

Scleroderma or Systemic Sclerosis Defined

Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as an autoimmune disease. Hardening of the skin is one of the most visible manifestations of the disease. The disease varies from individual to individual. Scleroderma is not contagious, infectious, cancerous, or malignant. (National Scleroderma Foundation, 2023)

The Most Common First Symptom of Scleroderma

Raynaud's Phenomenon

Raynaud’s phenomenon (say “ray-NOHZ”) occurs when the blood vessels in the hands and feet overreact to cold temperatures. The blood vessels are extra sensitive and narrower than usual, making the hands and feet feel freezing and numb for a short time. Sometimes, fingers and toes change color to white, blue, or red. This is a symptom that will likely stay with you for some time. Here are some tips for managing Raynaud’s episodes:

What you can do:

Scleroderma-Related Symptoms You May Experience


Gastroesophageal reflux disease (GERD) is a common condition in which the stomach contents move up into the esophagus.


Calcium deposits can form in the connective tissues, which can be detected through X-ray imaging.

Esophageal dysfunction

An impaired esophagus function (the tube connecting the throat and the stomach) occurs when smooth muscles in the esophagus lose normal movement.


Thick and tight skin on the fingers results from excess collagen deposits within skin layers.


A condition caused by swelling of tiny blood vessels, in which red spots appear on the hands and face.

Other Common Symptoms You May Experience


People with scleroderma are more likely to have pain than people without scleroderma. Pain can arise from the skin, muscles, joints, or nerves. Scleroderma causes pain in 60% to 83% of individuals.


People with scleroderma often experience a lack of energy, also called fatigue. Patients who experience fatigue often find this symptom frustrating because they were used to living an active life and now need to adjust their activity levels.

Sleep disturbance

People with scleroderma face unique challenges, such as pain, medications, low levels of physical activity, joint pain, and tightness. All of these challenges can affect your sleep.

Brain fog

People with scleroderma often experience brain fog, which is a term used to describe feeling mentally sluggish and fuzzy. Brain fog feels like a lack of mental clarity; it can affect your ability to focus and make it difficult to recall things.

What Can I Do When First Diagnosed?

Being diagnosed with scleroderma can sometimes be viewed as scary or overwhelming. Scleroderma is a rare disease, and knowing that you are not alone is important! Here are a few things you can do as you adjust to living with this diagnosis.

Continue your life within your limits

Your goal is to pace yourself by balancing your activity and rest so you can do what you need and want to do. Manage your energy levels throughout the day by planning and pacing your activities. 

By doing so, you can maintain a stable activity level and continue participating in what you enjoy. Remember to prepare yourself for the day ahead so that you have the energy you need to tackle all of your tasks.

Listen to your body

Listening to your body's signals helps manage your health. Individuals who understand their patterns of fatigue, pain, or fluctuations in energy levels can plan activities effectively, allocating energy wisely. 

This increased awareness allows people with chronic illnesses to make informed decisions about their daily routines, helping them avoid triggers and adopt lifestyle modifications that can positively affect their well-being.

Stay active

Your body is experiencing changes, but one thing that hasn’t changed is your need for exercise. Over time, regular exercise can have enormous health benefits in addition to helping you manage your scleroderma. Keeping yourself healthy provides a stronger foundation for managing scleroderma.

In addition to “standard” exercises, it is vital to add stretching exercises. Daily range-of-motion/stretching exercises for fingers and other joints must be started early in the course of the disease before motion becomes limited. 

Rest and relax more

Adequate rest is essential for managing common scleroderma symptoms, including pain, fatigue, sleep issues, and stress. Rest allows the body to repair, regenerate, and conserve energy. 

Consistent and quality rest is linked to improved mental health. It provides a crucial foundation for coping with the emotional toll that often accompanies chronic illnesses.

Recognizing the importance of rest is crucial in managing one's overall health, having a better quality of life, and being more resilient.

Keep open communication with family, friends and others

One of the most common concerns of people with scleroderma is that people close to them without scleroderma do not understand what they are going through. This can be terribly frustrating and a source of misunderstanding or conflict. 

Remember, a person without scleroderma may never fully understand what it is like to live with scleroderma. This perspective reflects the reality that scleroderma is a complex disease that is difficult to understand. It also reminds the person living with scleroderma that they cannot assume their family or friends will know how they feel.

Modify your activities 

Most people in our society would say they are too busy and tired, but you are different. Your disease symptoms really affect your day-to-day energy. Simplifying your life becomes even more critical when you have scleroderma because you tire more quickly and need to manage your energy. It is harder to "push through" the fatigue to get things done than it was before your diagnosis. 

To make the most of your available energy, reviewing all your activities and removing any unnecessary tasks is beneficial. By pruning these activities, you can focus on the most important tasks and do things you need to and enjoy doing.

Talk To Your Doctor

Talking with your healthcare provider can help you take an active role in managing your health. Effective communication with your healthcare team is essential for making informed decisions. 

It is critical to be honest and upfront about your symptoms, even if you feel embarrassed or shy. Speak openly with your doctor or healthcare provider and ask questions to fully understand your diagnosis, treatment, and management plan.