Multiple sclerosis (MS) is a neurological condition and if you require therapy related to your MS symptoms, you would be seen by the Neuro Rehab Team. The MS Society and MS Trust are good places to look for information and resources.
Multiple Sclerosis (MS)
Types of MS
There are three main types of MS – relapsing, primary progressive and secondary progressive. You can read more about the different types here:
Symptoms
Physiotherapy and Occupational therapy assist you with managing your multiple sclerosis symptoms. There are many symptoms associated with MS but not everyone will experience all of them. MS symptoms can be mild, moderate, or more severe. They may come and go and change over time. Symptoms can be separated into two categories: visible symptoms – those that others can see and invisible symptoms – those that others cannot see, but still affect your life.
These include:
- Balance and walking difficulties
- Dizziness
- Spasms and stiffness
- Tremors
- Speech problems
Multiple sclerosis is very individual, no two people will experience it the same. There are several different management strategies for those with MS and it is very important to find the ways that help you best.
Medication
Management of MS is optimised through exercise and the use of medications. Medication will be managed through your neurologist and MS Nurse Specialist. If you have any questions or would like to discuss your medication, contact your MS Specialist Nurses.
Your MS nurses are Louise Pawson and Liz Watson, their contact number is 01274 365249.
Drug treatments, often referred to as Disease Modifying Therapies or DMT’s may be different in individual people. Different people have different types of MS and will experience different symptoms. Your doctor may also change the medications regularly and sometimes it can be confusing to keep track so don’t be afraid to ask them questions.
Further information on types of medications and treatments.
Smoking
The evidence behind smoking and multiple sclerosis is clearer than ever: smoking can make your MS worse and if you can, you should stop. It can speed up how fast you become disabled, create bigger and more lesions and can cause more relapses. You might not feel the damage with each cigarette but there is damage happening inside your brain. Read the information here to understand more about how smoking can affect MS.
Quitting smoking can be difficult but there is help and tips out there.
Diet
There is a huge range of reading online about what you should and shouldn’t eat with MS, but the truth is different things work for different people and it’s important to find what works for you. In general, eating a health balanced diet is good for everyone and will have a positive effect on your general health and wellbeing. Read more about this here.
For most people with MS, the best diet is a healthy, varied one. Lots of people say when they eat well, they feel better. Read here on tips to achieve a balanced diet. The MS society has a guide to eating healthy, shown here.
If you have any concerns speak to your GP, they may arrange for you to see a dietician.
Exercise
Exercise is extremely important in the management of multiple sclerosis. Being active with MS will help you stay as healthy as possible. Exercising can improve your mood and MS symptoms including balance, muscle spasms and fatigue.
Read about staying active and physical activity here: MS Society, stay active!
You should try to be physically active every day. The National MS Society recommends you aim for 150 minutes per week. Or just over 20 minutes a day. Exercises that target strengthening, cardiovascular and stretching are good to include:
- Try lifting and moving small weights – water bottles or tins work perfectly if you don’t have any weights
- If you have some you can use resistance bands
- Carry the shopping
- Hoovering – remember not all exercises have to be formal
- Strength exercises to try
- Get moving and get your heart going! It is important to find your own level – try doing 20 minutes at your own pace. Make sure you take breaks
- Get outdoors for a walk
- Gardening
- Aerobic exercise tips for MS
- Incorporate these into life at home – reaching up to high shelves or bend to put your shoes on
- Try Pilates or yoga
- Gentle stretching
- General and Seated Yoga exercises
- Seated and standing pilates exercises
- Seated pilates
- Try to challenge your balance whenever possible, whether that is standing on one leg while brushing your teeth or working on your sitting balance while watching TV
- Balance exercises
- Walking and balance exercises
- Balance information and exercise booklet
However, any physical activity is better than nothing. When exercising it is important to find something you enjoy and that works best for you. Your exercise should be tailored to your enjoyment and your symptoms.
Different exercise ideas to have a look through:
You may find different things that make it hard to exercise, read here about overcoming barriers to exercise.
Muscle spasms or stiffness can affect between 40-80% of people with multiple sclerosis. Like other symptoms this changes between different people, it can come and go or you might not experience it at all.
Read this booklet to understand more and check out this video with exercises that can help.
Fatigue is one of the most common symptoms for patients with MS. It is a complete physical and mental exhaustion that occurs with no relation to activities you may/may not have been doing. Fatigue can be the result of many different factors which may make you feel tired and lacking energy. There are two types of fatigue in MS:
Primary fatigue:
- Signals from your nerve and spinal cords have to go ‘the long way round’ to avoid any damage caused by MS or changes that prevent normal nerve transmission.
- Like in a car when you have to follow a longer diversion, your car uses up more petrol (energy) to get to the same place.
Secondary fatigue:
- Caused by the symptoms of MS, pain, sleep disturbance, muscle spasms and needing to go to the toilet more often can contribute to fatigue.
Learn more about fatigue here or watch a video about fatigue.
You should use your energy as efficiently as possible. Plan tasks in advance, split tasks up into more manageable sections (pacing) and prioritise and delegate tasks. For example, chop vegetables in the morning for your evening meal, so there is less to do all at once.
Now you are aware of some of these factors that contribute to fatigue, you can see if they apply to you and try to make these changes to your daily routine. Read here about different ways to manage fatigue.
Making sure you have the most energy possible by staying active, getting fresh air, eating healthily, finding ways to reduce your stress and improving your sleep hygiene will help manage your fatigue.
Exercise can be key in managing fatigue, try following this video or read the exercise section to find other exercises that suit you.
Sleep hygiene is about your bedroom environment and your habits (behaviours) during the day, as well as your habits before you go to bed, all play a role in how well you sleep. ‘Sleep hygiene’ is the term used to describe healthy habits that you can practice during the day and when going to bed to help you get a good night’s sleep.
Sleep is essential for your physical and mental wellbeing. It allows your body time to recharge and your mind to process information. Without enough quality sleep, our brains are unable to function properly.
Good sleep hygiene can help improve your sleep quality, which in turn can:
- Improve your mood
- Improve your concentration and memory
- Prevent you from developing sleep disorders (such as insomnia)
- Help you maintain a healthy weight
- Lower your risk of developing serious health conditions (such as diabetes and heart disease)
- Help your body fight off diseases
Signs that you have poor sleep including:
- Finding it difficult to fall asleep
- Waking up throughout the night
- Feeling tired during the day
- Often napping
Simple lifestyle changes that you can make will help you improve your sleep hygiene these changes including:
- Keeping regular sleep hours
- Keep the room at a cool and comfortable temperature
- Keep the room quiet
- Keep the room dark
- Only use the bedroom for sleep, sex and getting dressed
- Avoid using screens up to 2 hours before bed
- Avoid caffeine and stimulants after 12am – these include coffee, tea, energy drinks, alcohol, and chocolate
- Avoid smoking before bed or if possible, stop completely
- Avoid eating 2 hours before going to bed
- Incorporate exercise into your daily routine but avoid vigorous exercises up to 3 hours before bed
- Get exposure to natural light during the day
- Wind down before bed – try meditating or journaling
- Limit naps
Some more information is available click here.
A lot of people with multiple sclerosis will experience pain at some time. Pain can be one of the most difficult invisible symptoms to describe and manage. Only the person experiencing it knows how it feels, and it will be different for different people. Pain can be exhausting and have a negative effect on your mood. It can cause distress, fear, anger, and frustration. Pain can be really impactful on your ability to do everyday activities, so it is very important to find a way that works for you, to manage your pain.
Read here to learn about pain and MS and take a look here at the different types of pain and ways to help manage this.
Nerve pain is a different type of pain that causes uncomfortable and changed sensations. These often-unusual feelings come as a result of nerve damage caused by MS which causes unfamiliar signals to be transmitted to the brain. Your brain does not know how to process these new signals well, so it relates them to something you have felt (itching, burning etc). You may hear this type of pain referred to as ‘neuropathic pain’.
Nerve pain affects up to 1 in 4 people with MS and can occur in any part of the body. Different sensations can be difficult to describe, some describing words that people can use are:
- Burning
- Tingling
- Pins and needles
- Crawling
- Numbness
- Prickling
- Sensitive skin
- Wetness
- Stabbing
- Trickling
- Electric shock
- Itching
Like other MS symptoms pain may come and go periodically without treatment, or you may not experience them at all. But if you do there are a few things you can do to minimise the effects these include:
- Understand when the pain occurs – understanding the pattern and triggers of your pain will help you avoid these and minimise this. For example, if triggered by heat try keeping a fan on
- Medication – speak to your pharmacist or GP about what best suits you
- Gentle exercises – see exercise section
- Relaxation techniques
- Hot and cold therapy – try both out and see if your pain changes. If it gets worse or you notice changes to your skin speak to you GP immediately
Problems with thinking and memory can also be known as ‘cognitive problems’. The most common struggles that people with MS experience are to do with:
- Learning and memory
- Attention, concentration, and mental speed
- Solving problems
- Finding the right words
- Difficulty recognising things (visual perception)
- Difficulty judging distances and position (spatial relations)
Research says that between 4-7 in every 10 people with MS will experience some kind of changes in memory and thinking. For the majority of people these symptoms are only mild-moderate rather than severe. Like every other symptom cognitive issues will vary from person to person and from day to day. Just because you have MS doesn’t mean you will experience all or any of these symptoms.
Health care professionals can help you understand and manage any cognitive changes you may face or watch this video for tips on managing your cognitive problems.
Everyone at some point in life will experience stress and some feelings of anxiety, it is impossible to avoid completely but there are ways to help manage these feelings.
Stress is your body’s ‘fight-or-flight’ response to perceived danger. It is an automatic system that produces adrenaline and can result in increased heart rate, excessive sweating, feeling faint or dizzy, dry mouth, faster breathing or sometimes bowel or urinary problems. In nature when there is a threat, it prepares your body for action but in day-to-day life heightened stress levels for longer periods of time can have a negative effect on your health, gain a better understanding of your emotions and how to manage these.
Anxiety is another feeling that is very common for people with multiple sclerosis, affecting about 1/3 of people. MS is unpredictable so it is no surprise that the uncertainty and fear of the unknown can cause anxiety, read here to learn about anxiety and managing this. If you find it difficult to manage alone, there is professional help that can help you cope. You can discuss this with your GP or MS nurse who can help refer you to the right specialist or head here to explore this yourself: click here. If you don’t want to wait or are struggling to find someone you may want to pay to see someone. Click here to learn more.
A lot of people with multiple sclerosis find mindfulness to be helpful for managing their stress and anxiety. Have a read of this booklet to learn more and see if this might work for you: get help with beginning mindfulness. If you want to give mindfulness a go, get help with mindfulness here.
Multiple sclerosis can be hard to deal with but just know you are not alone and there is a range of help out there for you. If you need some emotional support, call the MS Society helpline between 9am – 7pm, Monday – Friday, except bank holidays to speak with someone about any concerns. The contact number is: 0808 800 8000. Or if you prefer you can send an email to helpline@mssociety.org.uk and get a response within 5 working days. Click for a video with more information about the helpline.
There are also a range of online support groups you can get involved with:
Facebook Groups
- MS Trust group – a safe, moderated, open Facebook group for anyone affected by MS to discuss life with the condition.
- Asian MS – Facebook page of the national group for people affected by MS from the Asian community
- Ladies with Lesions – a Facebook page for women with MS (closed group)
- MS Society – the Facebook page for the MS Society
- MS-UK – the Facebook page for the national charity MS-UK
- MS UK – a Facebook support group for people in the UK (closed group)
- muMS UK – Facebook page of a group set up for mums living with MS in the UK (closed group)
- Mutual Support – Facebook page of the group for current and former members of the Armed Forces and Reserves and their families who are affected by MS (closed group)
- Positive About MS – Facebook page of a group set up by people with MS to focus on the positive aspects of the condition
Forums/Networks/Communities
- Overcoming Multiple Sclerosis – forum of a charity promoting a programme of diet and lifestyle approaches to managing MS
- Shift.ms – a social network aiming to create a positive, enabling community for people with MS
- Kurmudgeons’ Korner – a forum run by and for people with multiple sclerosis
- MS People UK – a forum for sharing experiences, discussing problems and offering support and tips
- This Is MS – a community with rooms to discuss current treatments and new and alternative approaches