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Celia's Story

In 2016 I was at the end of a long period in which I had been experiencing stressful life events and health-related anxiety. The nature of the initial symptoms- the feeling of a tight band or corset around my stomach, IBS type discomfort meant that I had lots of tests and scans of my digestive system which revealed nothing untoward. It was suggested that I ask for a neurological referral.

The neurologist whom I saw thought that my symptoms were symptomatic of spinal cord inflammation but the scans of my neck and spine were inconclusive. He suggested trying a combination of physiotherapy and acupuncture to manage the condition.

I was symptom free for a few months but then symptoms recurred and developed. In 2018 I saw another neurologist who diagnosed FND. She suggested that I take Gabapentin to manage the symptoms, increasing the dose as necessary. I took this for a period of months but stopped taking it because it did not alleviate the symptoms in any significant way.

Since then, FND symptoms have been part of my life. They are usually episodic with each episode lasting 6-8 weeks, then subsiding slowly. However, this current episode began last September and is still going strong.

I experience some, or all, of these sensory symptoms on a regular basis.

Waking with a feeling of intense heat in the middle/bottom of my back which spreads through into my arms and legs as a tingling burning sensation.

Burning tingling sensations of various degrees of intensity intermittently throughout the day, in my back, limbs, feet and occasionally in my face.

Altered sensations in my arms and legs-it sometimes feels as though they do not belong to me.

Weakness in my limbs especially my arms-it can feel like an effort to hold a mobile phone or a knife and fork.

A sudden onset overwhelming wave of exhaustion and whole-body weakness. I feel like a balloon that has been pricked and every bit of air has drained out. This feels completely disabling, as though my body is ceasing to function.

An intermittent sensation of tightness, heaviness and pressure in my head.

Neck stiffness and pain.


Persistent episodes of dizziness. I had previously experienced brief episodes, but these became worse in August 2019. I saw an ENT consultant who diagnosed Persistent Postural Perceptual Dizziness (PPPD) and suggested seeing an audio therapist. I had a couple of sessions before Covid closed everything down.

A few years ago, I had a one-off alarming experience of the floor suddenly felt spongy under my feet as though there was nothing solid to support my weight. I had to sit down and for a while felt unable to stand up and move. This feeling lasted for about 15-20 minutes then passed. A paramedic was called and took me to A and E. I was referred to the TIA unit, and all tests were normal.

Since my diagnosis in 2018, I have had repeated visits to the neurologist who diagnosed FND, another neurologist, many different GPs and other practitioners in the hope of finding, if not a cure, then to be met with a degree of understanding and the offer of guidance and ongoing support.

In my experience the most difficult aspect has been how alone I have felt in dealing with something which has such an impact on my family and my quality of life. My heart sinks as I am told once more that I have to find ways to manage it and that no follow-up is needed. I shall not forget in a hurry the GP who, when I had made an emergency appointment because I was absolutely at the end of my tether, shaking and barely able to string two words together, looked up from his notes to me and asked, “Have you tried paracetamol?’’

One thing that I have learned through my experience is the need to be proactive in seeking out the support that is available, since there is very little by way of signposting and, in some areas, almost no resources, especially within the NHS. Where there are resources, waiting lists are lengthy and the criteria for inclusion in the list are stringent.

In the last few months, the most useful thing that I have done is to see an ENT consultant who has a special interest in dizziness. He referred me to an excellent neurophysiotherapist, and, with her encouragement, I started on a programme of vestibular rehabilitation. She in turn has referred me to a personal trainer with a special interest in working with clients whose movement is restricted by neurological, physiological and age-related issues.

I am also seeing a neuropsychologist who has been brilliant in offering a way to understand the origin and nature of my FND symptoms and providing practical guidance and support.

I now feel that there is a ‘team’ who have my back when the going gets tough. Another disheartening aspect of my experience with FND is that so many times when I have thought that I have turned a corner and that things are improving, there has been a setback of some kind.  I guess that is likely to be a feeling that is familiar to many who write and read these personal accounts. We have to face the challenge of gathering our dregs of resilience together and find a way to start the climb up the mountain again.

I can’t speak too highly of this website. It has been a lifesaver in the long dark watches of the night when sleep is far away and symptoms crowd in.