MS is a complex condition, and everyone’s experience of MS is unique. However, there are a number of symptoms that are often experienced by those with MS.
Outwardly noticeable symptoms, like poor balance, impaired mobility, and difficulty with fine motor tasks are central features of MS. But, not all symptoms in MS are outwardly visible. As a result, these “hidden symptoms” are often overlooked. Three of these – chronic pain, fatigue, and negative mood – are the focus of this program.
The problem of chronic pain in MS was not well studied until the early 2000s. Studies have shown that:
- Up to 80% of people with MS have pain
- About 25% of people with MS have severe pain (which interferes with their lives)
- People with MS are more likely to have pain than people without MS
- Most common pain sites are: legs, feet, back
- Many people with MS have pain in more than one location
Fatigue is an invisible symptom of MS that may be misinterpreted as depression or a lack of effort or motivation. In MS, the impact of fatigue may be compounded by muscle weakness.
- As many as 75-95% of all people with MS have fatigue.
- Fatigue is described as the worst symptom by 50-60% of those who have MS
- Rates of depression are 2-3 times higher in people with MS compared to the general population
- Approximately half of all people with MS will develop depression at some point during their lifetime
- At any one time, approximately 25% of people with MS are thought to have depression
- Anxiety and stress are also common in MS
What can you do about your MS symptoms?
Chronic pain, fatigue, and negative mood, are complex problems that are often difficult to manage. There is usually no single medication or “easy fix” that will provide total relief for any of these symptoms. As a result, people with MS often seek out a number of different strategies in an effort to find relief. One of the most effective ways that patients can address symptoms is through the use of self-management skills and strategies.
What is Self-Management (SM)?
Self-management is defined as, “What people do on a day-to-day basis to feel better and pursue the life they desire” (Teresa Brady, PhD, Self-Management Consensus Conference, 2010)
- Recognizes that the day-to-day management of MS is done by you and not by a medical provider, as shown in Figure 2.
- Shifts power to you, so YOU are “in charge” of your health
- Involves having both the skills and the confidence to deal with the day-to-day challenges that come with living with MS
- Consists of a set of personalized coping skills or tools that you practice so that they become new and helpful ways of living your life. If practiced enough, these skills can become habits that help maintain your health and well-being.
Why use Self-Management?
Research has shown that people who use a self-management approach to manage chronic health conditions:
- Are more confident in their ability to manage their symptoms
- Are happier
- Feel better
- Are better at reducing the negative effects of MS on their life.
What is the purpose of this program?
Self-management programs, such as this one, have been shown to be helpful in managing MS pain, fatigue, and/or depressed mood (Ehde et al., 2015). Usually, they are delivered in a clinic by a psychologist or social worker. However, it is often difficult for people with MS to access these treatments, due to a lack of:
- Availability of treatment
- Finances (inability to pay for the treatment)
This program was developed to:
- Provide a high-quality program, specifically designed for people with MS that:
- Supports self-management skills that are known to be helpful to people with MS.
- Is totally free-of-charge
- Is accessible on any internet-connected device
- Can be accessed anytime and anywhere (convenient!)
Web-based programs such as this have been developed to improve symptom self-management for other conditions, like fibromyalgia and breast cancer. Studies of these programs have shown that the web-based programs help people learn new skills to manage their symptoms (Williams et al., 2010). This program was designed specifically for people with MS.
How can this program help me?
Pain, fatigue and negative mood are commonly reported by people with MS. And, very often a person must manage more than one of these symptoms at a time. Too often these symptoms cause suffering and get in the way of important life activities.
The goals of this program are for you to:
- Learn skills to help you manage MS symptoms, including fatigue, pain, and mood
- Learn how to implement these skills in your daily life
- Increase your confidence in your ability to manage your MS symptoms
- Improve your health, mood, and quality of life
- Engage more fully in the aspects of your life you value
Teaming up with your healthcare providers
Taking steps to self-manage your symptoms is incredibly important. However, you do not have to manage your symptoms alone. There are a number of healthcare providers with different areas of expertise who might be helpful to you. These include:
- Neurologist – specializes in diagnosing and treating neurological disorders; may prescribe disease-modifying therapies or medications to help you manage your symptoms
- Physiatrist – physical rehabilitation physician who focuses on restoring functional ability and quality of life for those with MS
- Psychologist – helps people cope with stressors and symptoms and engage in self-management. Helps you work through social and emotional issues, and work toward valued life goals; can also evaluate and treat cognitive (thinking) problems
- Physical Therapist – helps people increase their mobility, restore physical functioning, and relieve pain
- Occupational Therapist – helps people regain functional ability in everyday activities to achieve the highest degree of independence possible
- Psychiatrist – specializes in diagnosing and treating mental and emotional disorders
- Speech-Language Pathologist –specializes in diagnosing and treating communication disorders, voice and swallowing disorders
You are the most important member of your healthcare team. And, you are most likely to be effective in managing your symptoms when you work to self-manage your symptoms AND collaborate with your health care providers to develop a treatment plan together.
You can help yourself the most by taking an active role in your care. Try to talk as openly as you can with the members of your healthcare team about how things are going. Are you having a hard time following their suggestions for managing your symptoms? If you are, it may help to talk honestly about your concerns and work together to solve any problems as they arise. Your healthcare team’s goal is to help you feel better.
Where do I go from here?
My MS Toolkit can help you create a plan based on what you can do right now to manage your symptoms. You can learn about ways to relax, change your way of thinking, set and work toward goals for your life, and use activity and rest to manage your symptoms. Through this program, you will also be able to track your progress with helpful work sheets. With My MS Toolkit, you can customize and change your plan as your needs change over time by taking the Steps for Me assessment.
Connecting with MS Resources and Community
There are a number of organizations and support groups that can help you learn more about MS. You can find a listing of these groups in the Support Organizations link located in added features.
Ehde, D. M., Elzea, J. L., Verrall, A. M., Gibbons, L. E., Smith, A. E., & Amtmann, D. (2015). Efficacy of a Telephone-Delivered Self-Management Intervention for Persons With Multiple Sclerosis: A Randomized Controlled Trial With a One-Year Follow-Up. Arch Phys Med Rehabil, 96(11), 1945-1958 e1942. doi:10.1016/j.apmr.2015.07.015
Williams, D. A., Kuper, D., Segar, M., Mohan, N., Sheth, M., & Clauw, D. J. (2010). Internet-enhanced management of fibromyalgia: a randomized controlled trial. Pain, 151(3), 694-702. doi:10.1016/j.pain.2010.08.034