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Managing relapses

March 2019

Ask the expert: relapses

MS Specialist Nurse Miranda Olding from the Beds and Northants MS Therapy Centre answers your questions about relapses in MS.

What is a relapse?

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

A relapse is a relatively sudden (over hours or days) episode of new symptoms or a worsening of existing MS symptoms. People call relapses by different names including an attack, a flare up, an episode, a blip or an exacerbation.

If you have relapsing remitting MS, you may have episodes of symptoms (a relapse) that occur for a period of time (usually days, weeks or months) which then improve either partially or completely (remission). 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.

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 are 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 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 or pain, memory and concentration, and mobility. You can experience one or several of these symptoms together during a relapse.

Whatever symptoms you experience, they're likely to get gradually worse over a few days, or perhaps longer, and then level off. After a time (typically weeks, though this varies) the symptoms will usually subside and you'll gradually start to recover. Sometimes the symptoms of a relapse go away completely but, in other cases, they may not fully disappear.

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 to do day-to-day and your symptoms may improve within a few weeks. However, other relapses may be more severe and 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.

Explaining a relapse

Making Sense of MS: Gail Clayton, Lead MS Clinical Nurse Specialist, and Neil Robertson, Professor of neurology, explains what a multiple sclerosis relapse is?

What isn't a relapse?

You may find it difficult to tell if you're having a relapse or not, particularly if you've only been diagnosed recently. As you become more familiar with how MS affects you, you'll find it easier to recognise when you are simply having a bad patch of symptoms which is part of the normal everyday up and down pattern of MS. However, it can be difficult to be sure of the cause of changes in symptoms so, if in doubt, contact your MS team or GP.

These are a few things you can look out for which may explain why your symptoms are worse and reassure you that you're not having a relapse:

Day-to-day fluctuations
Many people with MS find that their symptoms fluctuate all the time and they can find it difficult to know when they are experiencing a relapse or if it's just 'part and parcel' of their MS. Sometimes there's no obvious reason for this, but at other times you may find that your symptoms get worse if you're particularly tired or stressed. If this is the case, once you've had time to rest, you should find your symptoms ease.

Temperature
You may find that when you get hot, for example if you're in a hot, stuffy room or have been exercising hard, your MS symptoms get worse. Once you've cooled down, you should find the symptoms settle down again. Some people find that being too cold makes their symptoms flare up.

Stress
Stress can make any symptoms harder to live with and there is some evidence to suggest that stress could trigger relapses, so try to identify the things that make you stressed and find ways to manage this.

Infections
If you are unwell, for example if you have a cold, a bladder infection or a stomach bug, you may find that your MS symptoms get worse. Once you've recovered from the cold or treated the infection, your symptoms should start to improve. However, be aware that a more severe infection can trigger a relapse, so if you continue to feel unwell despite treating the infection, you should contact your MS nurse or GP.

How does someone know they are having a relapse?

Making Sense of MS: Gail Clayton, Lead MS Clinical Nurse Specialist, and Neil Robertson, Professor of neurology, explain how you might tell whether you're having an MS relapse.

What happens in a relapse?

When the immune system attacks the myelin covering of nerves, it causes inflammation and damage to the myelin (demyelination). Messages pass along demyelinated nerves more slowly, or may even be completely blocked. This can lead to a variety of symptoms, depending on the part of the brain or spinal cord that is affected.

When the inflammation subsides it is possible for the damaged myelin to be replaced, 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.

It should be noted that inflammation doesn't always result in a relapse. It can occur in a part of the brain which isn't associated with symptoms, or the 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 one of the measures which make up the NEDA (no evidence of disease activity) treatment goal.

What should I do if I think I'm having a relapse?

If you think you're having a relapse you should report it to your MS team as soon as possible.

Relapses can be a sign that your MS is becoming more active so it's important to report each one, even if you don't think you need medical treatment. If your MS is becoming more active, it may be necessary to consider starting one of the disease modifying drugs or switching to a different one.

Soon after diagnosis, your MS nurse should explain what to do if you think you're having a relapse. If you haven't been told what to do, you could ask your MS nurse or neurologist for advice. Different centres have different approaches to reporting and managing relapses. For many people, their MS or neurology nurse will be the first point of contact. For others, it could be their neurologist or GP. Some MS nurses will discuss your concerns by phone or email, others may book an appointment to see you. Some MS teams have relapse clinics that you can attend at fairly short notice.

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). Some women find their MS symptoms worsen around the time of their period, so your MS nurse 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 etc?
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.

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. If you need a rest then do your best to take one.

How are relapses treated?

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.

Steroids

If your relapse is having a significant effect on what you want to do day-to-day, your MS team or GP may suggest you take a short course of steroids. Your MS nurse or neurologist 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 ideally 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

Rehabilitation

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.

Follow-up appointment

If required, your MS nurse may arrange a follow-up appointment, which might be either 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.

Recovering from a relapse

If you're going through a relapse, it's important to bear in mind that it will usually settle down of its own accord. 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.

Home life

You might find you're not able to do all the household tasks that you'd normally undertake. Try to be kind to yourself and keep within your limits while you're recovering. Consider asking for some help from family and friends while you're recovering – perhaps help with the shopping, washing up or collecting children from school could make all the difference. Asking for help can be one of the hardest things to do but the chances are that your family and friends really want to help and perhaps just aren't sure what they should offer to do - 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.

Work

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

Taking time off work isn't easy or always possible and some people with MS have no alternative but to continue to work during a relapse, which can be difficult. If this is the case, it may help to let your manager or supervisor know that you're having a relapse. It may be possible to arrange for you to work from home, temporarily reduce your hours, take some flexi-time or have longer or more flexible breaks during your working day depending on your needs. Under the Equality Act, if you've been diagnosed with MS 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 supervisor 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

Feeling emotional

Relapses can take you by surprise and the symptoms can be difficult to deal with. 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, depressed or worried in this situation but try to remember that these feelings won't last forever. If they do become overwhelming, you could make an appointment to discuss your concerns with your GP or MS nurse.

If you are 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 could 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.

Thinking processes affected

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.

Can I reduce my risk of having a relapse?

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.

There are a number of potential triggers which can increase the risk of having a relapse.

While some studies have suggested that a prolonged period of stress can cause a relapse, results from other studies have been less clear-cut. An infection can cause a temporary flare-up of 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. Smoking hasn't been directly linked with an increased number of relapses, but it could have an indirect effect as smoking increases the risk of chest infections, which in turn can trigger relapses. 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.

Being prepared

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

monitor 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 available 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 with your family 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, toilet rolls etc.

Find out more

Staying Smart - online resource on MS and cognition
NICE MS guideline information for the public - recognising and treating a relapse

References

Burton JM, et al. Oral versus intravenous steroids for treatment of relapses in multiple sclerosis. Cochrane Database of Systematic Reviews 2012;(3):CD006921. Full article
Duddy M, et al. The UK patient experience of relapse in multiple sclerosis treated with first disease modifying therapies. Multiple Sclerosis and Related Disorders 2014;3:450-6. Full article
Galea I, et al. Relapse in multiple sclerosis. BMJ. 2015;350:h1765. Summary
Steelman AJ. Infection as an environmental trigger of multiple sclerosis disease exacerbation. Frontiers in Immunology 2015;6:520 Full article
Tremlett H, et al. Relapses in multiple sclerosis are age- and time-dependent. Journal of Neurology, Neurosurgery and Psychiatry 2008;79:1368-74. Summary
Burns MN, et al. Do positive or negative stressful events predict the development of new brain lesions in people with multiple sclerosis? Psychological Medicine 2014;44:349-59. Full article
Artemiadis AK, et al. Stress as a risk factor for multiple sclerosis onset or relapse: a systematic review. Neuroepidemiology 2011;36:109-20. Full article
Nickerson M, et al. Impact of multiple sclerosis relapse: The NARCOMS participant perspective. Multiple Sclerosis and Related Disorders 2015;4:234-40 Full article

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