My Experiences of FND

Hello. I’m Wendy. I’m 47 years and live with my husband, 3 children, 2 dogs and a cat in the Forest of Dean. I became involved with Bristol FND because I was an inpatient at Southmead hospital, where I meet some lovely people and a support group was born. There is no provision in the Forest of Dean so to have the support of this group has been a real life line for me. I am more than happy to give lifts to anyone wanting to come from the Forest area.

We all have different stories with FND, or being carers for FND sufferers. My story began last spring. I caught a cold but was as exhausted as if I had flu. I began to recover, but couldn’t walk as far as I used to and always looked grey in the face. One month later I fainted. After resting, my friends tried to help me up but my legs went from beneath me and I was going to pass out again. The GP sent me straightaway A+E with suspected Addisons disease. The tests there showed nothing and eventually they discharged me. I had lost over 1 stone of weight unintentionally I was bedridden for a month, unable to turn over in bed even. As I tried to become more mobile the neurological symptoms started and was sent to A+E again with lots of tests, which again revealed nothing. I was known in the village for running so everyone was shocked to see me in a wheelchair.

I understand FND to mean a disorder where the anatomical structure of the nerves is OK, but the nerves don’t function properly, hence FND. Nothing abnormal can be seen on scans. A good analogy is migraine. People have genuine neurological difficulties while having a migraine, and yet scans reveal nothing structurally wrong. The brain just misfires. it is also an umbrella term. It can be caused by physical (eg illness) or mental stress, but not in some cases it just seems to appear. In my case, the underlying cause is a lifetime of mental stress, from which I have recovered mentally but it seems to have exhausted my body. As in Little Britain, the computer says no! I can shuffle around the house, but need a wheelchair or scooter for more than this. It also affects my memory and thinking.

My life has completely changed, but I have learnt to live at a different level. This is when you realise what is and what isn’t important in life. You will have your own story and your own way of coping with it. For me, being part of a support group has been more valuable than the medical side (let’s face it there’s not a lot they can really do about it anyway). I have made genuine friendships because of it. We support each other emotionally and share useful tips and insight to help each other on our way and enjoy each other’s company. You can feel you are in limbo with FND because there is so little understood about it, and you don’t fit into any traditional medical categories. You can feel misunderstood. I had to become my own doctor as I had no help from the neurologist. I found these aspects frustrating and stressful, and that is quite common. Being able to share those frustrations with others who understand has got me through.

We hope to think that we are an open and friendly group here for mutual support and friendship for both sufferers and carers. We enjoy each other’s company and have fun, an important part of genuine friendship. I would encourage you to take the plunge and come along and see whether it is for you or not.

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