7 Things Every Adult With CREST Syndrome Should Know
CREST syndrome is a rare genetic condition that affects nerve cells and causes chronic pain, numbness, tingling, and muscle weakness. But the real challenge lies in understanding the symptoms and learning how to manage them so they don’t prevent you from leading an active life. Here are 7 things every adult with CREST syndrome should know:
What is CREST syndrome?
CREST syndrome is a rare nervous system disorder that affects the central nervous system (the brain and spinal cord). It causes chronic pain, numbness, tingling, and muscle weakness. Many people with CREST syndrome also experience extra skin sensations and abnormal movement patterns in the fingers and toes. This can make it hard to walk and maintain normal daily activities, like dressing or brushing your teeth. CREST syndrome affects both men and women equally. It happens when nerve cells in the central nervous system become damaged. Because nerve cells are the “messengers” that allow messages to pass between different parts of your body, they are crucial for both physical and mental health. For people with CREST syndrome, certain nerve cells become injured in early childhood, which leads to the symptoms. But it’s not clear why these nerve cells become injured in some people, but not others.
It’s not always painful
Chronic pain is common among people with CREST syndrome. This is due to nerve damage from the disorder. When nerve cells are injured, they release chemicals called neurotransmitters. Some neurotransmitters ease pain, but too much of them can cause pain to “spill over” into other parts of your body, like your arms or legs. Chronic pain can also be a side effect of medication and other treatments. If you have CREST syndrome and experience chronic pain, it’s important to discuss the source of the pain with your healthcare team. You may need to change your medication or try a different treatment. Chronic pain can also be a sign that you need to adjust your daily activities. For example, if you have chronic pain in your legs, it’s easier to “trip” if you walk or stand up too quickly.
Managing the symptoms can be hard work
While certain medications can help ease pain and improve function, they also come with side effects. You may find yourself trying several treatments before finding one that works for you. It’s a good idea to talk to your healthcare team about any side effects you’re experiencing from medications. And if you feel you need to change medications, it’s important to discuss this with your doctor, too. CREST syndrome is complex and symptoms can change over time. It’s normal for people with CREST syndrome to experience improvements and setbacks. In order to get the most out of CREST syndrome, it can help to develop a “mental checklist” of things you want to accomplish each day.
People with CREST syndrome need to stay hydrated
Everyone knows to drink water to stay hydrated. But it doesn’t hurt to remind yourself to stay hydrated, too. It’s easy to get caught up in your daily activities and forget to drink water. But staying adequately hydrated can improve your symptoms, help you feel better, and help you feel more energetic. If you have CREST syndrome, it’s especially important to stay adequately hydrated. For many people with CREST syndrome, decreased hydration is a major contributor to pain.
You might find it difficult to drive or ride a bike
CREST syndrome can cause reduced mobility, impaired strength, and balance. Depending on your symptoms and how severely they compromise your health, you may need to modify how you move. For example, if you have severe weakness in your arms, it may be difficult to reach the pedals on a bicycle and shift gears. Driving a car on a regular basis can be challenging, too. CREST syndrome is complex and symptoms can change over time. It’s normal for people with CREST syndrome to experience improvements and setbacks. In order to get the most out of CREST syndrome, it can help to develop a “mental checklist” of things you want to accomplish each day. It can also help to know “when to say when,” which is when you can’t do something because of your CREST syndrome symptoms.
Make friends and join clubs – you’ll feel better!
It can be helpful to have friends you can talk to about your CREST syndrome experience. You can also join online communities, like CREST Support Groups, to connect with others. Joining a supportive social group can help you feel less isolated. It can also help you meet new people who have similar experiences. Keeping a positive attitude and practising self-compassion are good ways to help manage your CREST syndrome symptoms and live a fulfilling life.
Self-care matters too. Take care of your body and soul.
CREST syndrome is a serious condition that can affect your central nervous system. It’s important to discuss your symptoms with your healthcare team and use their advice to continue living a healthy lifestyle. It’s also important to take care of your body and soul. This can help you feel better and decrease your risk of future medical issues. Good nutrition, regular exercise, maintaining a healthy weight, and getting enough sleep can help you feel better and may even improve your CREST syndrome symptoms. It’s also important to make sure you don’t have any underlying medical conditions that are contributing to your symptoms. It’s also a good idea to have an emergency action plan in place so you know whom to call if you experience a medical emergency.
CREST syndrome can be challenging to live with and manage. It’s important to remember that you are not alone and that there are many people who have experienced CREST syndrome and are living active, fulfilling lives. It can also be helpful to connect with a support group for people with CREST syndrome. These groups can help you feel less isolated and give you the opportunity to meet others with similar experiences. There is hope. With the right support and care, people with CREST syndrome can live full and happy lives.
More info on: CREST syndrome – Wikipedia