Learning to live with & manage my FND/CFS

I was diagnosed with FND in 2020, but my symptoms began several years earlier culminating in a GP appointment where I highlighted several neurological symptoms that had slowly materialised over the years.

I was suffering from cluster headaches/migraines, involuntary twitching/jerking which developed into non epileptic attack disorder, periods of chronic fatigue, under the skin sensations (burning & numbness), nerve pains, slurred & stammering speech, mobility problems, muscle spasms & brain fog.
My life & that of my husband changed as a result of these chronic & debilitating symptoms. I was an active 60 year old who enjoyed walking & gardening. I was frustrated & felt lost. The final conversation I had with my neurologist was concluded with his advice not to ‘over catastrophise’ my symptoms! This felt unempathetic & unhelpful - where did I go from there?

I struggled to cope & my symptoms worsened & found it particularly hard to live with the Chronic Fatigue. I was referred to a CFS Centre, who gave me some coping strategies that were useful, but really didn’t help too much as the non epileptic episodes exacerbated my fatigue & halted any progress I made. I reached a very low point during a particularly bad period of bed bound fatigue & receiving no help from health care providers, I thought if I could only manage my fatigue, I could better cope with my FND. I did some online research & found some CFS/ME recovery stories. I discovered a book called ‘CFS Unravelled’ by Dan Neuffer which explained the condition. He runs an online recovery course called ANS REwire & over the period of 12 months he leads you through a recovery program. I took a leap of faith & enrolled. I learnt that my CFS & FND was caused by a dysfunctioning autonomic nervous system & step by step he guides you in the process of REWIREing your brain, along with dietary changes, meditation practices & much more. I applied myself wholeheartedly & approached it with an open mind as I was desperate to be well again. I improved & thought for a while that I was recovered, but after an amazing period of remission for about 12 months, my symptoms, although not as severe, do return periodically. This year, I have fluctuated between remission & relapse. I continue to return to the coping mechanisms I learnt through the course, which always helps. Recently I have also purchased a ‘beechband ’, which is a wellbeing devise that is predominantly for people suffering from Parkinson’s. It is a device that delivers a gentle rhythmic vibration to support nervous system regulation. It has the ability to control the symptoms of jerks/tremors experienced by FND sufferers as well as people with Parkinsons. Again, it is not a cure, but another way of controlling/minimising some of my symptoms. I recommend both, the on line course & the ‘beechband’.