What does it mean when you're diagnosed with relapsing remitting MS?
MS is often classed into three main types: relapsing remitting MS (RRMS), primary progressive MS (PPMS) and secondary progressive MS (SPMS). This information is an introduction to relapsing remitting MS.
Increasingly MS is divided into relapsing and progressive instead so you may also come across this naming system.
If you don’t know the type of MS you have, you might like to read this information and the corresponding piece on progressive MS. It can take some time for your MS team to decide which type of MS you have but keeping a diary, with notes on any new or worsening symptoms, can help them work it out.
What is relapsing remitting MS?
The name reflects the pattern of symptoms which alternates between having relapses and being in remission. During remission you may have no symptoms or your symptoms may be relatively stable although they may vary in intensity from day to day. These periods of relative stability can last from months to years until they are interrupted by a relapse. Relapses are the sudden appearance of a new symptom or the reappearance of, or sudden significant increase in, old symptoms. A relapse is sometimes called an attack, episode, flare up or exacerbation.
To count as a relapse, new or worsened symptoms must last for at least 24 hours, although it may take a few more days before you, or your MS team, can be sure. During a relapse, symptoms may last a few days but more commonly last for weeks to months.
If there’s no improvement in your symptoms, then your MS is worsening and you are experiencing progression in your MS. Progression and worsening are the terms used to describe the change towards a greater number and severity of symptoms that cause increasing disability.
About 85% of people with MS are diagnosed with the RRMS type. It’s two to three times more common in women than men and is usually diagnosed when someone is in their 20s or 30s.
Find out more:
What are the symptoms?
Each person has a different pattern of symptoms. Some of the most common symptoms in RRMS around the time of diagnosis are problems with eyesight, slowed thinking (cognitive symptoms) and unusual feelings in the skin (such as pins and needles or numbness). Fatigue is also very common. This isn’t normal tiredness, but a mental or physical exhaustion out of all proportion to the activity carried out.
You may only experience a small number of symptoms around the time of diagnosis and may never experience them all.
Your MS team will support you in managing your symptoms well. You may want to make lifestyle changes, perhaps to your diet or exercise, so you can be as well as possible. There’s a wide range of treatments for individual symptoms that you can discuss with your health professionals, including:
- drug treatments like painkillers
- therapies, such as physiotherapy to help with muscle stiffness, or cognitive behavioural therapy for anxiety or depression
- management techniques, for example pacing yourself to minimise fatigue
- rehabilitation, aids and equipment which can improve day to day living if your symptoms are making this difficult
Your symptoms and the treatments you need may change following a relapse.
Find out more:
What happens in a relapse?
Relapses happen when the immune system attacks the insulating covering of nerves (myelin) in the central nervous system (brain and spinal cord). The resulting damage (lesion) means that messages are interrupted, or don’t get through at all. Your symptoms will correspond to the areas of your brain and spinal cord that have been damaged. Lesions may be seen on MRI scans.
As the inflammation calms down, the damaged myelin may be repaired to some extent, but messages may not pass along your nerves as quickly so you may find that some symptoms persist.
Inflammation can cause a lesion without resulting in a relapse. The damage may occur in a part of your brain which doesn’t give rise to symptoms or your brain may be able to adapt rapidly and re-route messages round an area of inflammation. These are known as silent lesions and can only be seen using MRI scans. Increasingly, these silent lesions are seen as an important marker of MS activity and a target for preventative treatment with disease modifying drugs (DMDs). Taking DMDs may cut down the number and severity of your relapses.
When do relapses occur?
It’s impossible to tell when you’ll have a relapse or how often. Every person's MS is different and so is every relapse. Some people have several relapses a year but others go for years without any.
As the number and timing of relapses is beyond your control, the best strategy is to manage them well when they happen.
Pregnancy does not affect how someone's MS develops in the long-term. During pregnancy, most women experience fewer relapses but the risk of relapse increases during the first few months following the birth. If you’re planning to become pregnant, or think you might be already, it’s best to discuss this with your MS nurse or your GP, especially as most medications are not recommended during pregnancy.
Find out more:
Am I having a relapse?
When you’re first diagnosed it can be difficult to work out if you’re having a relapse or if it’s a bad patch of symptoms which can be part of the everyday up and down pattern of MS.
A relapse is a relatively sudden (over hours or days) episode of new symptoms or the reappearance of, or significant increase in, old symptoms. To be considered a new relapse:
- it must last at least 24 hours, but usually lasts anything from a few days to a number of weeks or months
- it must occur at least 30 days after the start of a previous relapse
- there must be no other explanation for the onset of symptoms such as an infection or a rise in body temperature.
What’s not a relapse?
Your symptoms can also get worse for other reasons. If they improve after you deal with those causes, it’s unlikely you’re having a relapse.
- Infections. Illnesses like colds can cause symptoms to flare up. Look after yourself as usual for a cold, flu or stomach bug, or ask your GP or MS nurse about antibiotics for a bladder infection. Severe infections can trigger relapses so, if you continue to feel unwell, contact your MS nurse or GP.
- Heat or cold. Being too hot or cold may make your symptoms worse so cooling down or warming up may help.
- Stress. Stress can make any symptoms harder to live with. If you identify things that make you stressed you can find ways to manage them.
- Tiredness. Doing too much can cause a flare up. Take a rest and see if you feel better. If so, pace yourself to avoid another bad patch.
- Periods. Some women find that their symptoms get worse around the time of their period.
What should I do if I am having a relapse?
If you think you’re having a relapse, and your symptoms are mild, you could wait to see if they improve. However, if you experience sudden difficulties such as with eyesight or your mobility, it’s more important to contact your MS team in case you need treatment.
Every MS service operates differently so you should ask your MS nurse or neurologist in advance about what to do if you think you may be having a relapse. Some MS services have relapse clinics while others will discuss your concerns by phone or email.
It’s important to tell your MS team about a relapse even if you’re not on treatment and managing well. Your MS team need to know how many relapses you’ve had to advise you properly about starting, switching or continuing treatment with a disease modifying drug to help control the number and severity of your relapses.
It can be worrying when symptoms flare up but, if in doubt, contact your MS team. With time, you’ll develop a better feel for whether you’re having a relapse or not.
Treating a relapse
Sometimes steroids will be given, particularly if your new symptoms are affecting your day to day abilities like using your hands or walking. Steroids calm the immune system and can speed up recovery but don’t change how much you recover in the long term.
Ideally, steroids should be started as soon as possible after confirmation of your relapse. High dose steroids are given, as either pills or intravenous infusions (drip), for three to five days.
Steroids can have significant side effects. In the short term, you may experience low or high mood, trouble sleeping or gastric upset. In the longer term, steroids can cause thinning of the bones if given too often. Consequently, treatment is usually limited to a maximum of three times a year and some neurologists prefer not to treat with steroids at all.
Recovering from a relapse
Recovering is mostly about waiting to see what happens. Your symptoms may improve quickly or you may still be getting better, three to six months after a relapse. Some symptoms may go completely, others may become permanent. Be kind to yourself and don’t push too hard, so you don't get tired or fed up if you can’t do all your usual tasks.
- Home life. Consider asking for extra support from family and friends – help around the house or collecting the children from school could make a difference. Asking for a hand can be hard if you’re used to being independent but it’s likely friends and family want to help.
- Working and studying. You may need to reduce your hours or take time off. As you’ve been diagnosed with MS, the Equality Act entitles you to ask for reasonable adjustments to help you.
- Follow-up appointment. Your MS nurse may arrange to discuss how you are and further treatment options. During a relapse, you may have developed new symptoms or been less active and become deconditioned. If symptoms are affecting your daily activities, specialist advice and support can help you get back to work or do everyday tasks.
- Feeling emotional. Relapses can be a surprise and the symptoms can sometimes make you feel overwhelmed. This is normal and can be made worse if you’re not sleeping well and by some medications, such as steroids. As you recover from the relapse, this should become less of a problem and these feelings won't last. If they do become overwhelming, discuss them with your GP or MS nurse.
Find out more:
Reducing the risk of a relapse
Disease modifying drugs
Disease modifying drugs (DMDs) are a group of drugs that can moderate the attack by your immune system on your central nervous system to decrease how many relapses you have and how severe they are. This reduces the unpredictability and impact of MS.
There’s increasing evidence that starting treatment with DMDs soon after diagnosis minimises the damage to your nerves and reduces disability progression. This helps you to stay as well and active as possible in the longer term.
Your neurologist or MS nurse may raise the topic of DMDs but, if not, you could ask them about whether they may be suitable for you, the possible risks and side effects and when to begin treatment. Although early treatment is recommended, you should not feel pressured into beginning treatment before you are ready to make that decision.
A well-balanced diet and regular exercise will help you stay as well as possible and reduce the risk of relapse triggers such as infections. Smoking increases the risk of chest infections which in turn can trigger relapses.
An infection can cause a temporary flare-up of symptoms but more serious infections, including flu, can trigger a genuine relapse. Consequently, people with MS are recommended to have the annual flu vaccination.
Find out more:
Is there disability in relapsing remitting MS?
What is disability?
You may be worried about becoming disabled. Disability means different things to different people. What one person considers disabling may not count as disability, or impairment, to someone else.
A dictionary would typically define disability as any result of having a condition that limits what you can do. For example, if you have a bit of numbness in your fingertips, it could make it hard to fasten a button. Some people might class this as disability but many wouldn't.
The public's image of disability can be different again. People often look for outward symbols of disability like a walking stick or wheelchair. This isn’t surprising, given that the symbol of a wheelchair is often used to represent disability. This can be frustrating if your symptoms are less visible ones like fatigue or pain.
Often disability is not about you personally but the environment in which we all live. For example, if a building has steps, then it will not be accessible to all. If products in the supermarket have labels with tiny writing, then not everyone will be able to read them.
Will I become disabled?
As each person's MS is different, no one can predict how much your MS might, or might not, affect you. You’ll have your own way of thinking about disability and it will be up to you to choose how you define yourself. MS may affect what you can do but only you can decide if this is disabling. As the symptoms of MS vary so much, you may have different views of yourself at different times.
If symptoms affect your mobility, a walking stick or wheelchair can be helpful. In reality, three quarters of people with MS never use a wheelchair full time and this number is expected to improve as the introduction of disease modifying drugs twenty years ago is reducing the level of disability experienced.
Many symptoms can be improved by trying different treatments. For some activities, it can be a question of doing the same thing but in a slightly different way. For example, to help manage fatigue, you might find it helpful to sit on a stool or chair to prepare food or do the ironing, rather than standing.
Although the word 'disability' may feel uncomfortable or inappropriate, it can help you access support. It may be particularly helpful at work or when considering whether any government assistance or financial benefits apply to you. There’s no countrywide scheme to register as disabled so each benefit has its own definition of disability.
The Equality Act covers you as soon as you are diagnosed with MS even though you may not see yourself as disabled at all. It covers physical difficulties but also symptoms that affect your thinking, like memory problems and fatigue. The Act requires employers and schools to make reasonable adjustments so that you’re not at a disadvantage because of any difficulty caused by your MS.
You may find that you are eligible for some government benefits especially if you have difficulties with walking, driving or key activities like washing or dressing. Some benefits are awarded according to the impact of your MS rather than being linked to your level of income or savings.
Living with relapsing remitting MS
Diaries and reviews
You might find it helpful to keep a simple diary to chart your pattern of symptoms and work out when you’re having a relapse. You could list any new or worsening symptoms, when they happened and whether they went away or lingered. You could add in when you started or stopped any medication and whether this improved your symptoms or caused any side effects. You could include any relapses plus the dates and outcomes of your appointments with health professionals.
A diary could be on paper, PC or mobile device. It may be useful to choose something that's easy to take to your appointments.
It can be good to look back over a year and see if you need to discuss anything in particular with your health professionals. A summary of your diary can help your MS team to see at a glance what’s happening with your MS and then advise and support you better.
A review of your MS once a year is recommended but if you have substantial change in your symptoms you may be seen more often. If you haven't had a review for a while, you could take the initiative and ask your GP or MS nurse to arrange one, rather than assuming that the system will contact you at some point.
Preparing for a relapse
Relapses are unpredictable, so to help prepare you might want to:
- make sure you know who to call in your MS team.
- keep a list of people who can help out.
- get children used to sleep-over’s and helping with age appropriate chores.
- familiarise yourself with your employer's policies for sick leave, reasonable adjustments and other work issues.
- keep a stock of essentials such as toilet roll and easy to prepare food with long use-by dates.
Day to day living
Living with RRMS means living with uncertainty. Symptoms can change and you may worry about how well you’ll be on a given day. People living with MS say that the best plan is to put aside your worries as much as possible, live each day as it comes and deal with any symptoms or relapses if, and when, they happen.
It’s important to look after your overall physical and psychological health including managing stress and fitness. This will help you to keep doing the things you enjoy.
You may be concerned that your RRMS will get worse very rapidly but this rarely happens. Some people find that their MS stays the same for decades. Many people who are initially diagnosed with RRMS find that, over time, their MS changes to SPMS, they have fewer or no relapses but symptoms have more effect on everyday life.
MS is not a terminal condition but it is one that you will live with for the rest of your life. It’s unlikely to be a direct cause of death. Most people with MS live into old age although their lifespan, on average, is about six years less than the general population. If you are more severely affected, you may get more infections than healthier people and can develop complications that affect breathing and circulation. This can decrease your life expectancy so it’s important to keep as well as possible and seek treatment promptly.
Diagnosis with RRMS starts a lifelong journey. It will take time to learn about your MS, how to manage it well and be your own expert.
Find out more:
- Diary of symptoms
- Making the most of appointments
- What happens after MS diagnosis?
- Living well with MS
- Secondary progressive MS (book)
The bottom line
None of us know what life has in store for us. Try not to focus too much on what might happen or assume that MS will have an effect on some particular aspect of your life. This time and energy could be spent in a more positive way on something that is important to you right now.
This page will be reviewed within three years