New to FND

[Violinist95]

I just got diagnosed with Functional Neurological Disorder today. I've been struggling with a tremor in my right arm for over a year and then about a month ago the tremor spread to my right leg as well. I am in constant pain. At 22 years old it makes me feel crazy and so alone to be struggling with my health so much. I'm a full time college student studying Music Education so being able to play my instrument, violin, is a big part of my degree program. I've struggled a lot with it over the past year. It was a combination of victory and defeat when I just barely managed my recital at the end of this semester. What tips and information can you give me about FND? Honestly at this point I'm mostly looking for hope.

[malalatete]

Violinist Prof Mark Edwards treated (and was reviewed on a BBC documentary) a classical guitarist with functional tremor by way of deep electrical/magnetic stimulation of the brain. He has form for dealing with this sort of thing. He is in London (sorry, can't remember which hospital, he has moved since I saw him). He is your best bet in the UK - but seriously in demand so there might be a wait.

On the hope front when I saw him in 2013 I could only walk 19 steps a monute. Am relatively symptom free at the moment and dashing about all over - as long as I keep life on an even keel. I think the main tricks are deloading your body of stresses, distraction therapy, and not allowing the pathways to become entrenched - so identifying and aoiding triggers that set off the abnormal behaviours. Slow down, stop, if necessary and allow yourself time to convalesce from whatever assault/trauma has sent your brain circuitry misfiring. It can be a long, hard wait, but it can have results.

[Violinist95 in reply to malalatete]

Thank you so much for responding! I live in a rural part of the US so unfortunately going to see Dr. Edwards isn’t really an option. I had to drive 6 hours just to see the Movement Specialist that diagnosed me. I’ll for sure keep the electrical/magnetic stimulation in mind.

I’m not so great at letting go of stress. I’m trying to figure out what makes my shaking worse and I know my stress and anxiety is part of it. I’m going to start Physical Therapy and start seeing a Psychologist soon. I have my fingers crossed for results.

[pickleweed]

I recommend that you read or listen to the book Functional Neurologic Disorders, volume 139, from the Handbook of Clinical Neurology. I also recommend that you use the free app called Woebot to learn cognitive behavioral therapy, like how to avoid catastrophizing and avoid all-or-nothing thinking, since a person's beliefs can affect their FND (as described in the book Functional Neurologic Disorders).

[Halva]

I feel for you. I was struck by a van (senior) looking left and turning right. I was on my bike. (cyclist) I had a very bad concussion and shoulder damage with neck and back damage. I had some tests with hearing and dental like electrical stimulation for fitting braces etc. I started having head swaying and body swaying at the same time as a right arm tremor started. it was terrifying. It eventually spread to my other limbs and i now have trunk twisting and flailing of the arms. it went on for 6 years until i was finally sent to the ER and diagnosed 3 weeks later by a Neurologist (the first of 3) - by then i had developed NES and was in ER again 4 days ago. I had 7 hours of seizures from my physiotherapist triggering the movement pattern. I am struggling to hold on and don't understand how it can be treated. I used to do marathon and triathlon. Ive since had surgery and thats when it got worse. The only thing I can say is if you have trusted friends and family- get them educated as much as possible and have them stand by you. I didn't have a diagnosis and most of mine left. I find that you may be lucky as music is soothing and calming and fulfilling and perhaps not as physical as some of the things i did so this could keep your stress down. Stress is the worst. I am just waiting for advice n how it could be treated. I would say don't be on your own like i am and don't pressure yourself.