Complex Regional Pain Syndrome and Functional Neurological Disorder – do they feel the same to me?
Laura is 40 and was diagnosed with CRPS in 2012 and then subsequently developed FND in 2020. She reflects on similarities of some of the symptoms and learning to create better more ‘fluid’ pathways for limb movement.
My background is ‘sporty’ if you describe it in one word. I am a degree graduate in Physical Education, played county level women’s football, played both Rugby Union and League for a number of years and a competent cyclist and rock climber. All this changed after an Achilles tendon operation in 2012.
After surgery I knew something wasn’t right, I’m known for my pain tolerance but this was something more, the pain was unbearable with the highest level of pain relief not even blocking any of the pain signals to my foot. But some other subtle signs were worrying to me, lack of movement of my left foot, a 5-degree temperature difference of my left leg to right. It was cold and clammy with a waxy texture to the skin.
I spoke up and intervention started straight away, I had an intrathecal catheter (This is a pain relief delivery system into the spinal column) and started intense physio.
This was hard but maybe on reflection this stopped the real damage CRPS can do to the body. I never lost real function in my foot, my foot remained in the correct anatomical position and even with crutches I kept on moving.
My rehab was around 2 years and then I reached a sticking point where I could not tolerate touch which is called allodynia and the pain relief stopped working. I become a recluse and depressed that my body had let me down. I had tried everything and then I had opportunity to have a spinal cord stimulator trial and then a permanent implant. It was so successful I got my life back within months I was able to walk unaided and enjoy sport and the gym again.
With an implant a level of maintenance is needed so every 3-5 years’ time I need a battery replacement.
Recently I had a routine battery replacement where I developed after surgery a right-side weakness and tremor. The tremor was quite aggressive at first but the inability to move my right leg and weakness in my hand was very concerning.
Over hours and days this didn’t change, the tremor lessening but the function of my right side of my body was still an issue. This was something new to me and again physio and time helped some sort of movement. I was told that this problem was functional in nature and I was quite aware of FND as I have a friend who has gone through something similar.
One thing I did know with hard work you can recover and improve your function. This rang bells with my primary diagnosis of CRPS some years ago. The physical feelings were quite similar to CRPS, my limb didn’t feel my own, there was a heaviness when seated, laid down on the bed or on movement.
The main sticking point is creating those pathways again for normal fluid limb movement. I find it difficult to move my leg on demand. I get a headache and it feels like the message from my brain gets turned around half way as the doors are closed to lower limbs. Its tiring and sometimes frustrating.
What doesn’t help is the type of misunderstanding and language used surrounding FND. It’s difficult to describe and responses can be unhelpful if loved ones or strangers think you are faking it. I remember in the early days of my CRPS diagnosis I had to go through this and it doesn’t get easier. I’ve always been an advocate for often invisible disabilities. Rather than making assumptions about what an individual can or can’t do, the best approach is to ask them.
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