Managing relapses

For many people with MS, especially those with relapsing remitting MS, relapses are a part of their condition. Here we discuss what relapses are, how to recognise if you're having a relapse and how to manage them.

A relapse is where symptoms suddenly appear or become significantly worse, for a period of time. The symptoms usually come on very quickly over a period of hours or days. People call relapses by different names including an attack, episode, flare up or an exacerbation.

Relapses can last anywhere between a few days, up to weeks or even months. In between relapses are periods of remission where you may have no symptoms, or your symptoms are relatively stable. In relapsing remitting MS periods of remission can last from months to years until they're interrupted by a relapse. They tend to happen most often in the first few years after being diagnosed with MS but people can experience a relapse at any time.

If you have secondary progressive or primary progressive MS, you may also experience relapses, but much less frequently.

When you're first diagnosed with MS it can be difficult to work out if you're having a relapse or not. This is because many MS symptoms can fluctuate from day to day, so changes might be part of the everyday up and down pattern of MS, rather than the start of a relapse.

To be considered a new MS relapse:

• old MS symptoms must have become worse or new symptoms appeared – most people with MS experience some symptoms continuously, but between relapses this background level will remain more or less stable, it’s when symptoms change that you may be having a relapse
• symptoms must last for at least 24 hours – however, relapse symptoms generally last for days, weeks, or even months
• symptoms must occur at least 30 days from the start of the last relapse – MS symptoms should have been stable for about one month before symptoms become worse or new symptoms appear
• there must be no other explanation for the symptoms – heat, stress, infections and other factors can make symptoms worse and can be mistaken for the start of a relapse. When these factors are resolved, your symptoms should improve.

If you're not sure whether you're having a relapse, you could wait a day or two to see if your symptoms improve before contacting a health professional. With time, you will become an expert on your own MS and will develop a better feel for whether you're having a relapse or if it's just the day to day fluctuation of your symptoms.

Any MS symptom can be associated with a relapse but the most common ones include issues with:

• fatigue
• dizziness
• balance and coordination
• eyesight
• bladder
• weakness in a leg or arm
• areas of numbness
• pins and needles
• pain
• memory and concentration
• mobility.

You can experience one or several of these symptoms together during a relapse. Because relapses can affect different area or 'systems' of the body, your neurologist might describe your relapse according to how you're affected:

• optic neuritis – blurring of vision in one eye
• sensory relapse – persistent altered sensations in part of the body
• motor relapse – weakness in part of the body
• cognitive relapse – affecting thinking and memory
• mixed relapse – where two or more systems are affected.

Whatever symptoms you experience, they're likely to worsen over a few days, or perhaps longer, and then level off. After a time the symptoms will usually subside and you'll gradually start to recover. Recovery from a relapse can vary widely. Your symptoms may improve quickly, or recovery could be slower with symptoms still improving three to six months later. Sometimes the symptoms of a relapse go away completely; but there is the possibility that some might only partially improve, remain unchanged, or become permanent.

Both the frequency and severity of relapses are very variable and unpredictable. A UK study in 2012 found that on average, people with relapsing remitting MS have around one relapse every two years. However, some people may have several relapses in one year while others may go for several years without having a relapse.

During pregnancy, women are less likely to have a relapse, although the risk of relapse increases in the six months after the birth. This is thought to be due to changes in the level of hormones, particularly oestrogen, in the body during and after pregnancy.

Some relapses have relatively little impact on what you can do day to day and your symptoms may be fairly mild and improve within a few weeks. However, other relapses may be more severe or could require a stay in hospital followed by a recovery period. Recovery from a relapse usually happens within the first two to three months, but may continue for up to 12 months.

When the immune system attacks the myelin covering of nerves in the central nervous system (brain and spinal cord), it causes inflammation and the myelin can be damaged and stripped away (demyelination). These areas of damage are known as lesions. Messages passing along demyelinated nerves may travel more slowly, be interrupted, or may even be completely blocked and not get through at all. This can mean you suddenly experience new or worsening symptoms – a relapse. The symptoms you experience will depend on the part of the brain or spinal cord that is affected.

As the inflammation calms down, the damaged myelin may be repaired to some extent, a process known as remyelination. Messages are able to pass along the affected nerves more easily and symptoms gradually improve. Although the new myelin can work effectively, it tends to be thinner than unaffected myelin and so messages through the affected nerves may not be as fast as before the relapse, which is why some symptoms may persist.

Inflammation can cause lesions without resulting in a relapse. The damage may occur in a part of the central nervous system which doesn't lead to symptoms, or your brain may be able to adapt rapidly and re-route messages around an area of inflammation. These are known as silent lesions, or a subclinical relapse, and can only be seen using MRI scans. Increasingly, these subclinical relapses are being seen as an important marker of MS activity and are a target for preventative treatment with disease modifying drugs.

There are many reasons why your symptoms can get worse. It's unlikely that you're having a relapse if your symptoms improve after dealing with any of the following.

• Infections – illnesses such as a cold, flu, stomach bug or bladder infection can cause symptoms to worsen. Take care of yourself as you usually would, such as resting, drinking plenty to avoid dehydration, taking suitable painkillers to lower a temperature and speak to your GP or MS team if you think you need antibiotics for a bacterial infection. Severe infections can trigger a relapse, so if you continue to feel unwell, contact your MS team or GP.
• Heat or cold – if you experience temperature sensitivity, being too hot or too cold may make your symptoms worse, so strategies to cool down, or warm up, to keep yourself at a more comfortable temperature may help.
• Stress – feeling under pressure can make symptoms harder to live with. It's unlikely you can remove all the sources of stress in your life, but learning what causes you to feel under pressure and finding ways that work for you to manage your stress levels as much as possible can be helpful.
• Tiredness – overdoing it can cause symptoms to increase, so it's important to try and pace yourself to avoid fatigue. See if you feel better after taking some time to rest and recuperate.
• Deconditioning – this is a loss of physical fitness that can be experienced due to a lack of exercise or long periods of inactivity, such as bedrest. Your muscles become weaker and less toned, and your heart can't pump blood around the body as efficiently. As a result, any physical activity wears you out more quickly than it did before. This can happen in MS if you can't get around, or exercise, as easily as you used to and can be mistaken for your MS worsening. Deconditioning may respond to physiotherapy, regular exercise, or physical activity such as gentle stretches, walking upstairs or doing household chores.
• Periods – some women find that their symptoms get worse in the days before their period. Usually, they feel better once bleeding has started.

If you think you're having a relapse, and your symptoms are mild, you might choose to wait and see if they improve. However, if you experience sudden difficulties, such as with your eyesight or mobility, it's more important to contact your MS team as soon as possible in case you need treatment.

Every MS team works differently, so check with your MS nurse or neurologist in advance about what to do if you think you may be having a relapse. Some services have relapse clinics while others will discuss your concerns by phone or email, or book an appointment to see you.

Your MS nurse will ask you about the symptoms you're experiencing, when they started, what has changed and how these symptoms are affecting you on a day to day basis. Your MS nurse will also want to know if there's anything happening that could be making your symptoms worse such as any signs of a possible infection – this will often include having a test for a urinary tract infection (UTI). For women they may ask about your menstrual cycle.

Here are some of the questions the MS nurse may ask.

• When did your symptoms start to change and what has been the pattern of this change?
• What symptoms are you experiencing?
• Which part of your body is affected, for example if you have numbness, where is this?
• Have the symptoms stopped you doing anything that you can normally manage, such as preparing meals, driving, getting up and down stairs, working?
• Have you been ill lately or had any symptoms of infection, for example unexplained shivering?
• What medication are you taking and has your medication changed recently?

It'll be easier to answer these questions if you have been keeping track of your symptoms and any drugs you are taking.

Relapses can be a sign that your MS is becoming more active, so it's important to tell your MS team about every relapse even if you don't think you need treatment and that you're generally managing well. This might be an opportunity to raise with them whether you want to continue as you are, or if you want to start explore starting treatment with one of the disease modifying drugs (DMDs). If you're already on a DMD, a relapse could be an indication that it isn't keeping your MS under control, and you might want to discuss whether to continue with this treatment or look at switching to an alternative. Your team need to know about all the relapses you have so they can give you the best information to help you make these decisions.

It can be worrying when you experience a relapse, but try not to panic. It's important to bear in mind that it will usually settle down of its own accord. You know yourself best, so listen to your body.

Once your MS nurse has confirmed that you're having a relapse, they should discuss your symptoms with you and decide whether you need treatment for the relapse itself or any of the symptoms you're experiencing.

Not all relapses need treatment. The symptoms of a relapse will generally improve on their own.

Many MS teams choose not to treat relapses. However, If your relapse is having a significant effect on what you can do day to day, your MS team or GP may suggest you take a short course of steroids. They should discuss with you the pros and cons of taking steroids, so that you can decide together on the best course of action in your particular situation.

Steroids speed up recovery from a relapse by reducing inflammation and, if needed, ideally they should be started as soon as possible after your relapse has been confirmed. However, taking steroids won't affect how well you recover in the long term from the relapse and won’t affect the course of your MS.

You take steroids as tablets, or through an intravenous infusion (drip) in a hospital clinic.

Methylprednisolone is the steroid most often used to treat MS relapses. The NICE MS Guideline recommends the following treatments:

• tablets: methylprednisolone 0.5g daily for 5 days
• iv infusion: methylprednisolone 1g daily for 3–5 days

More information about steroids for treating relapses.

Whether you decide to take steroids or not, there may be other treatments to help you with your symptoms. These might include medication for MS symptoms, physiotherapy, occupational therapy to support you at home or at work, neuropsychology, or speech and language therapy. For more severe relapses, you may need help from social services, for instance with aspects of your personal care or preparing meals.

If required, your MS nurse may arrange a follow-up appointment, which might be face-to-face or over the phone. This will typically take place about two months after the start of your relapse and is an opportunity for your MS nurse to check how you are and for you to discuss other treatment options if things are still difficult. Your MS nurse should also make a record of your relapse and pass this on to your neurologist, so that your MS team has a full record of your relapses and symptoms.

If you're going through a relapse, it's important to bear in mind that it will usually settle down of its own accord. Recovery is often a case of waiting to see what happens. It's likely that you will feel unwell and more tired than usual while you're recovering from your relapse. This can have an impact both at home and at work. Be kind and don't push yourself too hard during this time.

You might find you're not able to do all the household tasks that you'd normally undertake. Consider asking for some support from family and friends while you're recovering – perhaps help with the cooking, cleaning, shopping, or collecting children from school so you've more time to rest. Asking for help can be one of the hardest things to do, especially if you're used to being independent, but it's likely your family and friends will be happy to help and perhaps just aren't sure what would be most useful – so talk to them!

If you need additional support, talk to your MS nurse. If you are struggling more than usual it may be possible to arrange some social services support, just to help in the short-term. Organisations such as Home Start may also be able to help you cope with family life.

You may need to reduce your hours or take some time off while you're recovering.

Taking time off isn't always easy, or possible, and you might have no alternative but to keep going during a relapse, which can be difficult. If this is the case, it may help to let your manager, human resources/occupational health team, or your education provider know that you're having a relapse. Depending on your needs, it may be possible for them to provide some support or adjustments, such as:

• arranging for you to work from home
• temporarily reducing your hours
• starting work earlier/later to help with fatigue
• providing someone to take notes for you in a lecture or meeting so you can focus on what is being said
• having longer or more flexible breaks during your working day.

Under the Equality Act, you're entitled to ask your employer to make reasonable adjustments to help you remain in work.

If you've had to stop working for a period of time, it's a good idea to stay in regular contact with your manager or human resources rather than just sending in the required paperwork. Keeping people informed will give you the opportunity to talk things through and discuss the best solution for everyone. When you're planning your return to work, it may be helpful to request a phased return, slowly building up the number of hours/days that you work over a period of time. 

More information about working with MS.

Relapses are usually unexpected, can take you by surprise and the symptoms can be difficult to deal with, leaving you feeling overwhelmed. This can trigger reactions such as anger that this has happened to you at this particular time, or you may feel that you should've been able to avoid the relapse. You might also have concerns about what the future holds for you or be concerned about the impact that MS will have on your relationships or your work. It's normal to feel emotional, worried or depressed in this situation but try to remember that these feelings won't last forever and they're likely to go away as you recover. If they do become overwhelming, or persist after you recover, you could make an appointment to discuss your concerns with your GP or MS team for some support.

If you're finding it hard to sleep well, you may find it more difficult to deal with everyday situations which wouldn't usually be a problem. Some medications, including steroids, can also have an impact on your emotions.

Relapses can also have an impact on people close to you. Your family and friends may experience a range of emotions such as anxiety, guilt or anger. Being aware that they may have these feelings during a relapse, and that it's a completely normal reaction, can help all of you to manage.

Because a relapse is often stressful, many people can feel distracted and a bit overwhelmed and may have problems thinking through complex tasks. These thinking problems are fairly common during a relapse but should become less of an issue as you recover.

During some relapses, you may have more obvious problems with thinking. You may find that your speed of thinking is slower and that you have trouble concentrating. If these symptoms have come on quite suddenly, it’s possible your relapse is directly affecting your thinking processes – this is called a cognitive relapse.

These symptoms will usually settle down. If they interfere with your ability to do important tasks, an occupational therapist or neuropsychologist can work with you to develop strategies to help you manage. You'll find all sorts of tips and tricks to help with cognitive symptoms on the MS Trust website Staying Smart.

You may have developed new symptoms during your relapse, or been less active which can lead to deconditioning (muscle weakness). Specialist advice and support can help you get back on track with your life.

Most people find that relapses happen with little or no warning, though sometimes people can tell when a relapse is 'coming on'. They can happen spontaneously, without any obvious cause and there's nothing you could have done to stop them. However, there are a number of potential triggers which can increase the risk of having a relapse, It's important to look after your general health – this includes your mental wellbeing as well as your physical health – as this could help reduce your risk of having a relapse.

An infection can cause a temporary increase in symptoms (sometimes called a pseudo-relapse) but more serious infections can also trigger a genuine relapse. As flu can trigger relapses, it is recommended that people with MS have an annual flu vaccination.

Lifestyle issues are also important in reducing the risk of relapses. A well-balanced diet and regular exercise will help you stay healthy and reduce the risk of relapse triggers such as infections. Recent studies have shown that smoking increases the relapse rate in people with RRMS, and also increases the risk of disease progression. Smoking could also have an indirect effect as it increases the risk of chest infections, which in turn can trigger relapses.

While some studies have suggested that a prolonged period of stress can cause a relapse, results from other studies have been less clear-cut.

Keeping as healthy as possible will also mean that, if you do have a relapse, you're better placed to recover from it.

Disease modifying drugs (DMDs) should help to reduce the number of relapses you might otherwise have, and also any relapses you do have should be less severe (that is, you are less likely to need steroids or a stay in hospital). Occasionally forgetting to take your DMD will not have much impact but, if you regularly miss taking your DMD, it will not be effective and you may have relapses more frequently. If you have been prescribed a DMD but you're reluctant to take it, perhaps because of its side effects or problems with taking it regularly, you should talk to your MS nurse or neurologist about this.

Relapses may be unpredictable, but you can make sure you're better prepared in the event you do have one. Some of the things you could do include:

• monitoring your MS, noting changes in your symptoms and how they're affecting you. Keeping a log of your everyday MS symptoms can help you and your MS team more easily identify a relapse. Keep a record of any drugs you're taking, the doses and how often you take them. You could keep notes about this in a notebook, diary or an app. Having this information readily to hand can help to make things less stressful when you're not feeling well and need to contact your MS team
• make sure you know who to call if you're worried you may be having a relapse, and what to do if your main contact is unavailable
• build up a support network – you can let people know, that from time to time, you may need help during a relapse. Keep a list of people who can help you such as family, friends, neighbours and work colleagues
• if you have children (especially young children) living with you, you can prepare them for times when you're unwell by encouraging them to take responsibility for chores appropriate for their age and creating opportunities for them to stay away from home overnight or for a few hours at a time. Make a plan together for the unexpected and maybe have a trial run so that your children know exactly what will happen if an unplanned situation occurs
• if you're working, ensure that you are familiar with your employer's policies for sick leave, returning to work, reasonable adjustments and other work-related issues. If you're self-employed but unable to work, make sure you know what benefits you may be entitled to and how to claim them
• stock up on everyday essentials such as longlife milk, food with long use-by dates, a selection of easy meals in the freezer and toilet rolls.

• Staying Smart - online resource on MS and cognition
• NICE MS guideline information for the public - recognising and treating a relapse
• Am I having a relapse? - this credit card sized concertina leaflet explains how to spot a relapse and what to do if you think you are having a relapse