Debbie is a carer and shares her story to support FND Awareness Day UK 2019 #WeCare4FND

My son Luke first started with symptoms in March ‘17

It began with pains in his legs and a phone call for a lift from the bus stop. He couldn’t make the 5-minute walk. The GP’s couldn’t find anything wrong. Although one GP did suggest fibromyalgia and referred Luke to a rheumatologist, he ruled out fibromyalgia and like one GP said he needed to exercise more.

Over the coming weeks Luke got progressively worse. The pain got worse and spread to other parts of his body. All blood tests were normal. Various pain relief was prescribed although it didn’t seem to help much.We then asked the GP for a referral to a neurologist. Despite saying, he didn’t think he was missing anything, he was very happy to do this just to make sure. The neurologist organised further tests and said if trying to walk is painful don’t make him do it, this was contrary to a GP advice.

By August, after falling when his legs just buckled from under him, he couldn’t walk at all. He had some physio from a friend, and she suspected FND. The pain was now so bad that the slightest touch was painful, even clothes were painful, and the shower felt like lots of little needles. By the end of August Luke had lost all upper body strength and was taken into hospital. Over the nine days on a neurology ward, the outstanding tests were done, and all were normal.

FND was diagnosed.

He came home from hospital able to walk a little with crutches and occasionally using a wheelchair. Throughout the autumn Luke’s mental health also suffered and he was very poorly. 

We had battled with mental health services, but Luke being 17 at the time, fell between children’s and adult services. Eventually the GP prescribed anti-depressants. We accessed private physio whilst waiting six months for NHS physio. He still has private counselling as it didn’t work out on NHS.

Two years on – he is able to get around with a walking pole except on bad days when he sometimes uses crutches. Pain and fatigue remain the biggest factors, immobility varies from day to day. He still has NHS physio, but I fear this will come to an end very soon.

Luke still battles FND every day and has not managed to get back to college.

Written by: Debbie

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