How to manage FND relapses

Functional Neurological Disorder (FND) can be hard to live with. Relapses are a common worry. Knowing how to manage FND relapses can improve your life. This guide gives the clear steps I use to manage symptoms, find support, and prevent future episodes. Learn to take control and live well with FND.

Identify triggers

How I begin to manage a FND relapse is by knowing and recognising my main triggers and when they are occurring: ill health, lack of sleep, and stress. Unfortunately, with this triad, one usually causes the other. Ill health makes me tired, and prolonged illness stresses my body and mind. Added stress or worries results in poor sleep and if it continues, a depleted immune system. Therefore, when one of these are present for a prolonged period, I need to prepare for a flareup.

Last year, I could see the perfect storm brewing. I had been over tired and stressed for a while, then I became unwell for several weeks. I was using my strategies, but it was all too much and the final straw broke the FND camel’s back.

FND Relapse Strategies

Based on my research and experience, I learnt the value of a relapse plan. A relapse plan is similar to an insurance policy. It takes some time to set up and there is value to having it, but you wish that you never have to use it. How I manage and recover from FND relapses is by using these strategies, which forms part of my relapse plan.

Accept

Accept that there is a high chance I would experience a FND flareup as I had previously. My recent relapse was because I had my triad of triggers for a duration of weeks, if not months. Therefore, my initial and only priority was to recover from my illness. There is no sense in fighting or even trying to manage the FND if I am not well. After all, illness is one of my main triggers, so a flareup was to be expected. Granted, at times a relapse has been spontaneous, but in my experience and with hindsight, I believe a stressor was still involved, even if I did not notice or was aware of it at the time.

Respond

Supporting my mindset becomes a priority once my general health is improved or at least improving. Getting angry at myself, FND, or anything else does not help. In fact, in my experience, it can make me worse. All those emotions—anger, fear, frustration, disappointment—my body seems to store it and interpret as another stressor, there is no value in holding onto them. So, I try to stay as calm as possible and process my feelings about the relapse. This is similar to trying to convince an avalanche to stay still, but I have found genuine acceptance of the diagnosis has been helpful including the evitable relapse. I have learnt how I view and respond to a relapse greatly influences my recovery.

Remember you can manage

How I stay calm is by gently reminding myself that it is simply a flareup. I knew there was a high chance of a relapse, and I have a plan. Further, I also remind myself that I have had these or similar symptoms before and I recovered! I am more experienced now, so I have a better idea of what works and what does not. Considering what helped or hindered in the past also gives me a plan or at least a mud map of what I need during a relapse.

Rest

This is the time to promote mental and physical rest by prioritising sleep and rest to recuperate. Consistently reminding myself this is what my body needs to “reset itself.” I have previously engaged, and at times still do, in the boom-bust cycle, which means I used to only allow myself to get to “barely functioning” before resuming a semi normal routine. This inevitably meant that I crashed and burned later with a seemingly longer duration and having even more consequences. Therefore, I give myself permission to prioritise my self-care because ultimately it is better for everyone.

Sleep patterns become a focus. Especially during a relapse, I need more sleep. Most often I aim for 8-9 hours per night, whereas, during a relapse I am making sure I am allowing for at least 10 hours per night consistently. I try to use the same bedtime and allow myself to naturally wake up as much as possible. Being more of a night owl makes this a little more difficult, as I enjoy the peace and quiet when everyone in the household is asleep, but I also know, that the longer I stay awake, the longer I sleep in, which causes havoc in the family routine in the morning so need to balance this.

I also need to rest my mind, body and soul which is different to sleep. Rest is relaxation, an opportunity to recharge. As I think my sleep quality can be affected as well, I might also incorporate a snooze throughout the day or as my partner describes “watching a movie through eyelids”. But rest also includes other activities that recharges energy levels.

Slow down

During this time, I also reduce any unnecessary tasks or responsibilities. Consider if tasks or responsibilities can be reduced, delegated or eliminated, even for a short period of time. Giving myself permission to reduce my expectations and accept a bare minimum level of myself, family and house. The book “How to Keep House While Drowning” by KC Davis helped with my expectations and provided suggestions of maintaining a functioning house during periods of recovery.

As I recover, my mind becomes more willing, but my body is still a little weak. I often fall into the trap of planning a project such as establishing a vegetable garden or decluttering the kitchen. However, this certainly is not the time to tackle a new project – even mentally planning a project (including planning a project for someone else to do). Planning can create a mental strain, never mind a physical strain especially if you try to attempt something. Through multiple trials and errors, I have learnt that decluttering a cupboard is more involved than you think! Therefore, I need to be patient with myself, not underestimating what I can do but also not overestimating either.

Evaluate

As I am going through the recovery process, I also take the time to evaluate. I evaluate what happened to possibly cause a flareup and what happened during the flareup. Sometimes, I can predict that a flareup may occur because of my life circumstances but I have also experienced sudden flareups, especially in my earlier years. Therefore, taking some time to evaluate the relapse can help to identify triggers and/or strategies. This helps to answer questions such as:

• What events led up to this relapse?
• What did I do or didn’t do?
• How was my thinking?
• What was I feeling?
• What helped and what didn’t?
• In hindsight, is there anything that I would do differently?

Medical Intervention

Everyone is different, with different symptoms, severities, experiences and comorbidities. Therefore, everyone should discuss their personal health issues and concerns with their treating health care professional/s and develop their own relapse plan.

I now try not to get any medical intervention for my FND symptoms. This is my personal choice, because I know how to recognise MY FND symptoms and how to manage any relapses.

Why I seriously consider if I need to seek emergency medical intervention is simply because of previous experience. I now know my FND symptoms and how best to manage them. I also realized that I was expecting them to “fix me,” but in reality, what can they do? There is no tablet or needle that is going to make it go away. Plus, most often their knowledge of FND is limited, so they will inevitably say or do something that makes me feel worse. Hence, I try to manage symptoms on my own with the support of my family.

However, on the rare occasion now, if my symptoms are persisting and consistent, I do see my local doctor. Having that checkup can help me in my recovery, at times. A checkup can help to reduce my anxieties associated with my health especially regarding a new symptom. On the other hand, I am also wary because it can also backfire. If it backfires, it will cause distress as the doctor (or me) have not responded in the way that I need them to at that time. Therefore, I have learned, when to see a doctor and when not to.

Conclusion

Does my process actually work? Most of the time, yes, it does. Does it work quickly? I wish it did! My body heals at its own pace; I can’t rush it. But by being proactive in my healing helps to reduce the duration and intensity in my flareup. And now, FND relapses are less common now and I also manage them better. Simply because I know my triggers and I have changed my mindset about FND (and life in general).

FND relapses are tough, but they are a lot easier now that I have a plan and a support team to help me manage.