FND symptoms quite commonly relapse.

It’s one of the most crushing aspects of the condition that even when you think your symptoms have gone or are only in the background, then they may just creep up on you again, or, ‘bam’, suddenly appear on a Tuesday morning for no reason, even after many months or even years.

There are people with FND who do just recover and don’t relapse, so it’s not inevitable but it’s common enough that usually I like to have a conversation about this with people who have FND and have made a good recovery, so they are properly prepared – just in case.

So here are my top ten tips for dealing with relapses

1. Expect and plan for a relapse. When things are going better then it’s tempting to forget you ever had FND and that it’s all in the past. But it’s usually better to say to yourself – ‘OK, so I might have a relapse, how am I going to spot the warning signs? And how am I going to react if that happens?’. Consider making a ‘relapse plan’ with your therapist if you havent done so already. Or maybe write yourself a letter or record a video ‘what would you like to tell yourself, with your current clear head, abouot how to manage the next relapse?’. This might be broad statements like ‘its not your fault you have FND, you did improve‘ or more specific ones like ‘Remember exercises 5 and 9, they really helped you, and whatever happens, open the curtains! take a shower!‘
2. Plan for getting different symptoms. Something that commonly throws some people is getting an FND symptom that they didn’t have before. Just bear in mind that possibility. You will need to have new symptoms checked out by a health professional. They might be due to something non-FND related, but quite often it will be the FND coming out in a different way.
3. Be honest with yourself if you feel your health sliding and get in early. It’s quite common for people with FND to be good at blocking out the signs that their health may be declining. Extra tiredness might just be put down to working harder, or they may feel that stress in their lives isn’t as bad as other people think. If your friends and family are noticing that there has been a change then listen to them and have a careful think about whether you might be having difficulty facing up to the fact that things aren’t quite as good as they were. The earlier you can do that the easier it will be to put things in place to prevent a worse relapse.
4. What might trigger a relapse in your case? Did you learn from the last time what tended to make things worse? Have you been ill or tired for another reason? Is it possible you have been overdoing it? Do you have trouble with boom and bust activity cycles? Is stress relevant to you or not? Does pain tend to trigger your FND symptoms? Becoming more aware of how your own body responds to these things may make it easier to recognise early signs
5. What might help protect you from a relapse? If you feel these warning signs coming on, then try to take action. Talk to someone trusted, give yourself some time off from other responsibilities if you can. Look after yourself more. Say no to people asking for things if you can.
6. Responding as calmly as possible to unpredictable relapses. Often in FND there aren’t any warning signs, symptoms just come back. Don’t overanalyse these situations – as long as you’ve had a reasonable and honest look at the situation then it may just be bad luck. If you wake up and have worse FND symptoms like not being able to move your legs or arms then how should you respond? You may understandably feel angry and frustrated that its happened, or frightened. Ideally, stay as calm as possible. Tell yourself ‘I knew I might have a relapse’, ‘I’m really annoyed/angry that it’s happened but I’m going to stay as calm as possible’. It’s easy for me to write this and really hard to put into practice I know, but the worst thing you can do when you have a relapse is panic about what’s happening or allow others to panic. Fear just heightens symptoms of disconnection and FND symptoms in the body. Similarly frustration and anger are likely to make symptoms worse. In the immediate aftermath of a symptoms just take a break from everything for a short while. Watch a favourite film, talk to a friend.
7. Think about techniques that have helped you in the past. How did you improve last time? What were some of the key strategies, exercises or ways of approaching your symptoms that helped you get control? Did you or a therapist record them somewhere as part of a relapse plan (see tip 1) ? Would re-reading them help now?
8. Don’t be angry with yourself. People with FND are, on average, especially good at being hard on themselves. Psychologists call this ‘self-compassion’ and for various reasons, it seems to be something that people with FND often struggle with. So if you have a relapse, don’t blame yourself, no one wants to have FND relapses. It’s not your fault you have FND, and you will need to take it easy for a while. Think about whether other things in your life make you feel angry with yourself. Are these some of the things that have worsened recently?
9. Think carefully about whether you DO need extra medical help. For some relapses, you may have no choice but to call a doctor or an ambulance. You may have something unfamiliar that is not FND or just can’t manage on your own. But if the symptoms ARE familiar and you think you can manage them, then staying at home with loved ones is often a much better scenario than coming to a hospital where people with FND unfortunately still experience stigma. Also, health professionals don’t have a magic wand to get FND symptoms better quickly again. Think about whether you can manage your symptoms for a while to see if they will improve by yourself. Please note I am NOT giving individual advice here – always consult your doctor if you are worried.
10. Plan for a series of relapses which overall get less severe and more manageable. In my experience, the most common scenario for people with FND who relapse is that they experience several relapses but they learn over time how to deal with them and the relapses become less severe and more manageable. I hope these tips help you get there a little faster. The picture below is on the physiotherapy page to help people know what to expect during treatment, but it is also relevant to how things can happen over months or years in FND

This page was written with the help of colleagues including Glenn Nielsen at St Georges Hospital London who has led on physiotherapy rehabilitation for FND as well as Kate Holt, Mark Edwards, Alan Carson and Izzy Williams.