Taking Care of Your Bones
Pain, fatigue, and bone fragility are common symptoms of OI. These symptoms can lead to difficulties with participating in school and sports, and enjoying time with your friends. Learn about pain, fatigue, and bone fragility, how to manage symptoms and how these symptoms can cause stress.
Taking care of your bones
I. Managing Bone Fragility
What is Bone Fragility?
Bone fragility means that you are at risk of breaking a bone more easily than teens without OI. If your bone density is low or if you have a curved or deformed bone that risk may increase. Medication to increase bone density, surgery to correct deformed bones and therapy to increase muscle strength all help prevent fractures. But despite all these efforts, fractures will still occur particularly if you experience some trauma or specific injury such as a fall.
Bone fragility can vary over the years. Some teens experience fractures in that time when their bodies are changing. Some teens can enjoy long periods (up to years) of no fractures at all. In general, the symptom of bone fragility decreases when you have finished growing and are reaching adulthood.
As with the other symptoms of OI, bone fragility can vary greatly from one person to another.
Managing Your Bone Fragility
Here are some tips or strategies manage your bone fragility by preventing fractures:
- Avoid sudden or quick movements particularly twisting movements
- Give yourself ample time to perform daily routine to avoid need for rushing.
- Be cautious or avoid unpredictable environments, such as young children or pets
- Be cautious or avoid wet or slippery surfaces inside or outside.
- Be cautious in certain areas with higher risk of injury; bathroom, stairs.
- Be cautious when transferring from 1 surface to another; ex moving from wheelchair to bed, or stepping into bathtub
- Consider using grab bars or railings
- Keep shoelaces short and tightly fastened
Coping strategies can help you deal with the knowledge that your bones are very fragile. Continue reading this module to learn more about how you can cope with your symptoms.
II. Your Plan for Managing Symptoms
You can have some control over some of your OI symptoms. As you learn more about ways to reduce your symptoms and practice these strategies, you are likely to see gradual improvements. You may start to feel better and able to do more things. Notice the small positive changes and congratulate yourself for them.
III. Self-Monitoring: Recognizing When to Seek Urgent Care
It is important to know when you need to call the doctor and how to detect specific symptoms.
When and How to Call
Call your doctor immediately if you have:
- Sudden, unexplained swelling, redness, and severe pain in any joint, bone or muscle. You might be unable to walk or weight bear. This could mean that you have a sprain or fracture.
- Headaches, tingling in the finger or toes, and blurry vision. This could mean you have a problem with your neurological system which needs investigation.
Seeking Appropriate Care:
- Consulting an OI-Knowledgeable Doctor: Whenever possible, aim to consult with a healthcare provider experienced in managing OI. Understand that securing an appointment may take a few days, or your primary doctor may not be available immediately.
- In Emergency Situations: If urgent assistance is needed, contact emergency services. Ensure you have your OI Good2Go Passport and refer to resources like the OI Foundation’s guide on common medical tests and procedures.
IV. Monitoring Your Symptoms
Given that your symptoms may change over time, some young people find it helpful to use a diary or journal to track these changes and what works to help control these symptoms. It is important to keep track of your energy level, your comfort, and your activities (what you can do). The journal just needs to be done for a short period of time so you can identify what helps to reduce your symptoms. This information can also help you talk to your doctor about these symptoms and to identify other ways to manage them.
Try keeping track of how well your medications, physical methods and coping strategies are working at managing your most bothersome symptoms over the next week using “My Journal”? You can review your journal at your next health care appointment.
Acknowledge the Symptoms
Recognizing what can contribute to pain, bone fragility, and fatigue is crucial for effective management of OI. It is essential to develop coping strategies early, before symptoms become overwhelming. Here’s why proactive management matters:
Understanding Symptoms:
Identify what triggers your symptoms and how to manage them effectively. Prompt action can prevent symptoms from escalating:
- Early Intervention: Implement your management plan as soon as symptoms arise. Waiting until symptoms get worse may reduce the effectiveness of your strategies.
- Using a Journal: Keeping a journal can be invaluable. Track which strategies work best for you, such as medications, physical methods, or coping techniques. This record will help you and your healthcare team improve your approach over time.
Plan the Strategy
How you handle your OI-related symptoms can change depending on where you are—like school versus home. There’s no one-size-fits-all approach, and what works for you might be different from what works for someone else. Here’s how to figure out the best plan for you:
Adapting to Different Situations:
Your symptoms might affect you differently in different settings. For instance, you might need a specific plan for managing your energy levels and staying comfortable at school compared to what you do at home. Understand how your symptoms affect you in different settings.
No One Right Way: Planning a Strategy Unique to You
There’s no perfect way to handle OI symptoms. Some methods will be more effective for you than others. It’s important to talk to your doctor about your options and figure out a plan that suits your needs and lifestyle.
Developing Your Support System
Different people can help you in different ways. Developing a wide support system of people who you can count on when you need them is the best way to ensure all your needs are met. These people can include your family, partner, health care professionals, teachers, peers, and friends. Check out the 🔗 Social Support module to learn more about the importance of having a support system, how to talk to them, and how to get help from them.
Getting Regular Exercise:
Incorporate exercises that are gentle on your bones yet effective for improving bone density. Activities like swimming, gentle yoga, or supervised strength training can help strengthen muscles and support bone health. Be sure to consult with your healthcare provider or physical therapist to tailor exercises to your specific needs and avoid injury. Check out the 🔗 Healthy Living module for more information.
Using the Spoon Theory:
Ever heard of the Spoon Theory? It’s a cool way to manage your energy levels throughout the day. Each “spoon” represents your energy for tasks. Use it to prioritize what’s important and make sure to rest when needed. This helps manage fatigue and keeps you going strong. Try it yourself with this 🔗 Pixel Spoons Game.
Familiarizing Yourself with The OI Splint Kit:
At Shriners Hospitals for Children-Canada, we collaborated with Carter Brown and his mother Jennifer to develop the OI Splint Kit. This kit includes essential tools, materials, and detailed instructions for splinting during emergency fractures. It’s designed to provide immediate and effective support in critical situations, ensuring quick stabilization and comfort.
OI Splint Kit
Creating An Individualized School Plan
As someone with OI, you may experience a fear of fractures and situations that may cause a fracture. A tool was created by the Shriners Hospitals for Children®-Canada to help support your integration into school-related activities. Use the 🔗 individualized school plan (argerietsimicalis.org) to help you prepare for and find creative ways to participate in physical education class. This plan can give you ideas on how to manage OI symptoms effectively while at school.
By being flexible with your approach, discussing options with your healthcare team, using practical tools like the Spoon Theory, and having resources such as the OI Splint Kit handy, you’ll find effective ways to manage OI symptoms wherever you are.
Taking Care of Your Mental Health
You may find that your symptoms cause you stress. It is important to take care of your stress as it impacts not only your mental health, but also your physical health, including your symptoms. Check out the 🔗 Mental Health module to learn more about managing your stress, feeling good about yourself, and psychotherapy.
Evaluate and Change the Plan if Needed
Managing your symptoms is a matter of figuring out what works and what doesn’t work for you. If you have tried a plan for a while and find that it isn’t working, think about changing that plan. Also, changes may need to be made to your plan as things change with your OI or in your life. For example, you may need to change your plan when you graduate from high school and move on to university. It is important to discuss your plan and how you think you are doing with members of your health care team. They may be able to come up with some good suggestions on helpful plans.
While it’s natural to have difficult days, especially when you aren’t feeling well, maintaining a positive outlook can help you adjust your plans. The key to each of these strategies is to keep practicing them! Try to practice the techniques as often as you can, and see if it helps manage your symptoms. You might find that not all of the techniques work for you. This is why it is important to try each of the strategies at least a couple of times.
- Which strategies worked best for you?
- Which ones did not work for you?
It’s important to:
- Recognize and praise your efforts, even when things don’t go as planned
- Celebrate your attempts and progress, regardless of the outcome
- Reward yourself for the hard work you put into managing your condition
- Staying optimistic can help you stay focused on your goals and build confidence in your ability to achieve them.
- Remember, it's okay to feel all of your emotions, and seeking support when needed is a sign of strength.
Setting Goals: Your Plan for Managing Symptoms
In order to reduce your symptoms and increase your ability to do important things in your life, it is necessary to set goals.
- What are your goals for managing your symptoms?
Are your goals S.M.A.R.T. goals? Remember how to set 🔗 S.M.A.R.T. goals.
You can use the 🔗 S.M.A.R.T. goals template.
V. Putting Your New Skills to Work
Your Toolbox of Skills
You have learned many different ways to manage your OI symptoms.
Which ones did you find worked best for you?
- Relaxation
- Imagery
- Belly breathing
- Attention focusing
- Mental games
- Changing your negative thoughts
- Exercise
- Others?
- List the strategies that worked best for you.
Now that you have many different skills to choose from in your toolbox, you can choose which ones will work best for you, depending on the situation. Using the same skill for every stressful event may not work. You may have to switch to another skill. It’s okay to try a different tool or even try the same tool but in a new way!
VI. Coping With Symptoms, Stress, and Setbacks
There are a number of ways you can learn to cope with stress related to your OI. Several of these ways have been covered in previous modules. Some examples are:
🔗 Understanding stress, negative thoughts, unrealistic beliefs, and goals;
🔗 Attention focusing and mental games;
🔗 Regular exercise and healthy eating.
You may have some setbacks on the journey to coping well. Things may happen that challenge you and may lead to more stress. Some common types of challenges include: moving to a new school or a new neighborhood, dealing with school placement tests and exams, adjusting to changes in friendships and your peer group, and taking on new responsibilities. Looking ahead to the next year, are there specific things that you think will cause challenges for you? 🔗 Write down those challenges. Can you list some ways to deal with these challenges?
Over the modules of Teens OI, you have learned a range of strategies and skills to help you deal with stress. Being able to recognize challenges and stresses ahead of time can give you a chance to prepare for them. You can use your new skills to reduce stress and help think through a challenging situation in a more prepared way.
There will be days when you feel stress, fatigue, and pain. This is understandable. These are the times to try your hardest to use the skills you have learned. If you keep using these skills, you will improve them slowly but surely.
You may have times when you feel discouraged or unmotivated. When this happens, you can talk to a friend or family member. They may be able to help you through the tough times. You can also talk to your doctor or other members of your health care team.
Remember, set short-term goals and reward your hard work!
In the previous modules, you’ve learned many different ways to manage your OI symptoms. The key to each of these strategies is to keep practicing them! Try to practice the techniques as often as you can, and see if it helps manage your symptoms. You might find that not all of the techniques work for you. This is why it is important to try each of the strategies at least a couple of times.
