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Multiple sclerosis (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 invisible symptoms are often overlooked. Three of these – pain, emotional changes (e.g. low mood/depression) and fatigue – are the focus of this programme.
Tip: Even if you don’t suffer from the three symptoms noted above, it’s worth reading through this programme, as you may find a lot of the guidance is still useful for you and how you cope with your MS on a more general level.
The problem of pain in MS was not well studied until the early 2000s; however, we now know that:
Pain, emotional changes and fatigue 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 living with MS often seek out a number of different strategies in an effort to find relief. One way that patients can address symptoms is by using self-management skills and strategies.
Remember, all MS management strategies should be carried out in consultation with and under the guidance of your healthcare team, and in combination with any ongoing medical treatments you may have been prescribed.
Self-management can be described as how people behave or act on a daily basis, in order to feel better and pursue the life they desire.
Self-Management:
Using self-management approaches to manage chronic health conditions can help people to:
Self-management programmes such as this one can be helpful in managing MS pain, emotional changes, and fatigue.
Usually, they are delivered in a clinic by a psychologist or social worker. However, it is often difficult for people living with MS to access these treatments, due to a lack of:
This programme was developed to provide a high-quality resource specifically designed for people living with MS that:
Web-based programmes such as this have been developed to improve symptom self-management for other conditions, like fibromyalgia and breast cancer. Web-based programmes can effectively help people learn new skills to manage their symptoms. This programme was designed specifically for people living with MS.
Pain, emotional changes, and fatigue are commonly reported by people living 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 programme are for you to:
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 professionals with different areas of expertise who might be helpful to you.
These include:
You are the most important member of your healthcare team. And, you are most likely to be effective in managing your symptoms when you collaborate with your healthcare team to develop a treatment plan together, while also working on self-management of your symptoms.
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 and how you are feeling. Are you having a hard time managing your symptoms or your treatment? If you are, it may help to talk honestly about your concerns and work together to solve any problems as they arise. Ultimately your healthcare team’s goal is to help you feel better.
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 programme, you will also be able to track your progress with helpful work sheets. With My MS Toolkit, you can customise and change your plans as your needs change over time by taking the Steps for Me assessment.
My MS Toolkit gives you strategies for changing your routines, health habits, and lifestyle to help you feel better. Learning how to set effective goals is an important skill that may help you make these changes successfully and, in turn, improve your health. The steps in this module will help you set and achieve goals such as:
You may want to visit Relaxation, Being Active, Sleep, or Managing Energy steps for more information about these goals.
Goal setting has many benefits to managing MS and its symptoms.
Setting realistic, personalised goals:
You might be wondering why goal setting is part of My MS Toolkit.
Most of us have set goals for ourselves at some point or another in our lives. Some goals we set because we want to achieve them. However, we can also set goals because others expect things of us or because we think we should be doing something a certain way due to societal norms or internal pressures.
We can also set goals that are too ambitious for our current situation. For example, a goal of exercising 30 minutes a day may not realistic if you are not exercising at all right now. A more realistic goal may be to start by walking 5 minutes a day and slowly increase that time, using a plan like the ones described in the Being Active module.
Goals can be motivating, but if set up the wrong way or for the wrong reasons, unrealistic goals can be discouraging if not met.
Think about a goal you might want to achieve. Goals can be anything that you find meaningful, enjoyable, rewarding, or aligned with your values, priorities, or needs.
‘Good for You Goals’ are:
‘Skills Goals’ are:
Long-term goals often involve many smaller short-term goals to reach them. If you choose a goal that might not be realistic, it can be useful to consider whether that goal can be broken down into steps to make it more manageable. For example, someone may want to create a flower garden. If his/her goal for the week includes building raised beds, hauling soil, buying and planting lots of new flowers it might not be realistic. However, gathering the materials to build the beds this week might be a piece of the project that could be accomplished as a first step toward the bigger goal.
Everyone, not just people living with MS, can benefit from learning how to set realistic goals. As a person who helps someone with MS, you can use this information about goals to help the person make important lifestyle changes. You can help them:
You can also use this information to set your own goals. The same goal-setting process may make a big difference in your life too!
This is not a replacement for advice from your healthcare professional or healthcare team. Please consult your healthcare team first and foremost about your multiple sclerosis and the self-management advice contained within this website.
Developed by the University of Michigan, provided by Janssen.
[1] Ehde DM, et al. Chronic pain in a large community sample of persons with multiple sclerosis. Mult Scler. 2003;9(6):605-611.
[2] Ehde DM, et al. The scope and nature of pain in persons with multiple sclerosis. Mult Scler. 2006;12(5):629-638.
[3] Ehde DM, et al. Chronic pain in persons with multiple sclerosis. Phys Med Rehabil Clin N Am. 2005;16(2):503-512.
[4] Svendson, et al. Pain in patients with multiple sclerosis: A population-based study. Arch Neurol. 2003, 60(8): 1089-94.