A 6-point ‘relapse checklist’ from our MS Helpline nurses

We put six big questions about relapses to our three MS nurses, Jennifer McNeil, Razia Khan and Liz Cooke. They shared some thoughts on recognising, planning for, and managing relapses. 

Remember, our MS nurses are available to give you information, support and talk to you about how to get help. To get in touch, call our MS Helpline on 0808 800 8000.

1. Is this a relapse? 

Lots of people living with MS experience relapses - also known as flare ups, exacerbations or attacks. But it’s not always easy to know if you’re having a relapse. There are also ‘pseudo relapses’ which can make symptoms worse for a while, but they’re not a relapse. Understanding more about what a relapse is can help you recognise one and get the support you need.    

What is an MS relapse?

• A relapse is caused by inflammation (new lesions) in the brain or spinal cord. It shows itself as sudden new or worsening symptoms
• Symptoms need to be present for more than 24 hours to be considered a relapse
• An infection can cause similar effects, so this must be ruled out
• Relapses can last from a few days to a few months
• After a period of time, relapse symptoms are followed by a complete or partial recovery

What is a ‘pseudo relapse’?

• A ‘pseudo relapse’ is a sudden change in symptoms which can be confused with a relapse
• A pseudo relapse isn’t caused by an increase in MS disease activity or inflammation. The increase in symptoms is often caused by infection, increased fatigue, increased body temperature, anxiety or stress
• A pseudo relapse tends to be short lasting. When the trigger is removed (for example, the infection) the symptoms should improve

People use different names for relapses. And sometimes the same words might be used for relapses and pseudo relapses. For example, you might call any short increase in symptoms a ‘flare up’. It’s only by carefully considering the cause that we can tell which it is.  

2. Who do I contact if I have sudden new symptoms?

You should call your MS nurse if you’re worried about sudden new symptoms. You might also want to speak with your GP. They can check for infections, such as a urinary tract infection (UTI). If there’s no infection it could be a sign it’s a relapse. If there is an infection, you can get that treated. Either way, it helps to know. 

As MS Helpline nurses, we can’t provide direct medical advice, but we can offer information and support about MS relapses and symptoms. 

Read more about our MS Helpline

3. Things your nurse or GP will need to know

It might be helpful to use a diary or app to keep track of when symptoms started, how they developed and any known triggers that might cause symptoms to feel worse.

Your healthcare professional might want to know:

• what are the symptoms and when did they start?
• are there any signs of infection?
• has your body been overheated?
• have you been under a lot of stress or anxiety recently?
• have you been overdoing it recently or noticed an increase in fatigue?
• have you had any recent vaccinations or changes to medications?
• when was your last relapse and did you have any treatment?
• have you recently given birth?

4. How do you treat an MS relapse?

Steroids are the usual drug treatment for an MS relapse. Other treatments might help manage your symptoms and how you're feeling. And self-care is important too.

MS relapses don’t always need treatment with steroids. It depends on the symptoms and the impact they’re having. Steroids can speed up the relapse recovery time. But with or without treatment, relapse symptoms gradually improve on their own.

If your symptoms are significantly impacting day-to-day activities, a doctor might prescribe steroids. Steroids work by reducing inflammation. They don’t affect how well you recover – just the speed of your recovery.

Healthcare guidelines recommend infection should be ruled out before steroids are prescribed. If steroids are appropriate, the recommended treatment is called methylprednisolone, which can be given as either: 

• tablets: 500mg daily for five days
• a hospital drip: 1g daily for three to five days 

Your MS team normally decides if steroids are needed, though your GP may also be able to advise.

Some common side effects of taking these steroids can include:

• indigestion, stomach pain
• a metallic taste in your mouth
• insomnia (trouble sleeping)
• increased appetite
• changes in mood

Read more about steroids for managing an MS relapse 

Self-care tips while you’re experiencing a relapse

Going through a relapse can be a stressful time, with lots of difficult emotions. It can be normal to feel scared for the future, angry or worried about how you’ll manage.

Taking time to rest and care for yourself is important. If you’re able, gentle exercise or activity may help you feel better physically and emotionally. Your MS team can guide you on how much activity and rest to aim for. This is usually based on your individual symptoms and mood. 

This is all part of a holistic approach. Thinking about you as a whole person, not just treating the relapse or the symptoms. You might also think about:

• a healthy, well-balanced diet
• gentle exercise, if you can
• rest
• mindfulness
• deep breathing
• staying connected with people close to you
• connecting with people who understand, maybe through social media or on our forum

5. What happens after a relapse?

Your MS nurse might call you about 6-8 weeks after a relapse to see how you’re getting on. You can tell them how you’re feeling and discuss treatments for any lingering symptoms. For example, they might arrange physiotherapy or neuro-rehabilitation. 

You might want to discuss disease modifying therapies (DMTs) with your MS team. These treatments reduce the number of relapses people have. So it’s good to check in and make sure you’re getting the best option for you. 

If you’re finding it hard to handle difficult emotions, your GP can also make referrals to services that could help.  

After a relapse, you can call your MS team if you’re concerned about lasting symptoms from it. 

Read more about therapies and treatments for MS

6. Can I prepare for relapses?

MS relapses are unpredictable and varied. But there are a few steps you can take to reduce their impact on your life and speed up your recovery: 

• Speak to your MS team about the best ways to prepare for a relapse
• Make plans to cover childcare, caring for relatives or pets
• Identify jobs around the house that always need to get done. Could a friend or family member step in to do those?
• If you live alone, try to stock up on toiletries, toilet roll, and frozen meals, in case you can't leave the house
• Take time to understand your rights at work before a relapse happens. Plan for telling your employer about absence – whether they know you have MS or not
• Have a plan for someone to drive if you can’t drive yourself

These are good places to start. And you might think of more things that work for you and your life.

Find out about our MS Helpline services