I've had FND for coming on 2 years now. Happened from a severe head injury. The neurologists said "oh its a short term diagnosis." "You'll be right in a year." "You don't seem that bad". I am so sick of these doctors telling me that im not in constant agony due to severe migraines, stuttering and repeating words on my bad days, as well as severe depression, short term memory loss, infact just memory loss all together and anxiety with PTSD thrown in just for good measure. Just cause someone is able to withstand a very high pain tolerance, why should they be looked at like its their own fault. I didnt ask for this, nor is it in my nature to not be very active. Ive been an Arborist for over 20 years now and the closet I've got to getting back to work is go see my mates on-site. I used to be a avid gym junkie and competed in body-building comps. I have just started back at the gym and can't push myself because of my fear of having disassociated attacks. To be told by quacks that we'll try this and try that, and nothing works.
So sick of these Australian drs not being up to scratch with everything.
Sorry rant over.
Written by
MatBridges
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Hi Matt could you see if you can find yourself an FND specialist, I refuse to see anyone else now I don’t have the energy or the time to waste on these neurologists who talk nonsense. Also could you have fibromyalgia as well check out this website fmaware.org and dr Devin Starlynls website she has this condition herself she’s written books and is extremely knowledgeable have a read of the medical handouts they’re a real eye opener and see what you think. I feel your pain I really do I just hope you can find the right help for you.
Thank you very much. Apparently my neurologist is a FND specialist, but im not sure. So far she hasn't done anything really to help. She doesn't even really listen to what im saying. Im trying my best with the limitations that ive got
Hi Mat, have you seen a migraine specialist? Getting the right treatment for your migraines will help reduce your constant fatigue and hopefully reduce your pain levels. I've been told being in pain is not FND. Maybe a pain management clinic may also help. Wishing you all the best.
Hello fellow Aussie! Yes, everything difficult here, especially with snap lockdown at any moment. I'm not as bad as most, but it's such a struggle. Asked to be reviewed again, but no response. Gp has been pushing me to get all tests again, but not much options here in regional Australia. Hope you find some solution. Don't give up! Take care. Moni
These doctors need a real hard Reality slap with the out of date text books and powerpoint slides they work with and stop using Google to look up FND and start using our own on board pc called the brain and human Empathy And start Treating people with a holistic approach. A neurologist told me to enjoy my 2 year holiday im sorry to you and to all of us with FND that we have to put up with this tottally Demoralising health care
Hi, although I am a long term Motor FND sufferer and tried all the medical services available to me including FND Rehab Therapies - it is one of those conditions that you get labelled with and basically left to fend for yourself with daily management adaptions that work for you and found out by you. The medical profession have to date not sorted out anything specific for FND recovery and have even less money and interest in doing so - other than Neurologists wanting FND Patients off their service to improve success statistics, at least that is my experience.
That said, I keep an eye on various Neurological articles that come up from time to time and take note of anything that rings a bell with my symptoms or methods of daily management.
There was one such article recently on `General Anaesthetic recovery' which I think it might well also relate a bit to your situation, because of your physical head injury I am assuming there was an initial enforced and unexpected unconsciousness?
The `New Scientist' article went on to say they had done a trial of volunteers who underwent General Anaesthesia and they monitored the brain activity the very first moment the brain awoke from the enforced unconsciousness and it surprised them!
Turns out the first brain function to come back online after enforced unconsciousness, the very first, is the problem solving part of the brain, not the basic coordination functions. This higher brain function is needed to help the body survive any immediate threat when consciousness is regained.
Now if that is true, then possibly FND is where the brain has been initially chemically or physically traumatised and `locked' into this Problem Solving Survival mode, then continues to prioritise that over the basic functions, affecting the normal communication route to coordinate movement and other basic body function signalling?
This certainly explains a bit why my symptoms ease when I lower my Adrenaline through de-stressing and pacing - and so reducing the activation of the `Flight, Freeze, Fight' survival part of my brain thus allowing my lower brain to get a look in!
Maybe a good starting theory for why FND occurs?
Maybe a good place to try and focus on when movement coordination is at it's worst?
Excellent analysis of a complex problem without organic explanations. My FND started when walking, on a specific date and time, and the fright probably reset certain balance pathways governing balance and mobility. Thirteen years of controlled mystery to date. There's a lot of attention being paid by researchers to brain modulation for neurological complaints, in our cases each sufferer has a unique experience to recount, but as future medical cures will be personalised, there are good reasons to be optimistic.
Hi! Wow. I feel like we have so much in relation to what you just described you have been going through. I had a Career as a Professional Horticulturist and light landscaping, working for high end contracts in Brisbane and winning garden comps, and messing with horses, however that all came crahing down in 2019 when i.was having disassociatiin, body malfunctioning, vertigo, chronic pain, scares on the road due to extreme tiredness or blackouts etc and not getting anywhere with an explanation or help, getting tested and brushed off cause nothing showed in the scans or made sense. I was seeing a specialist at a hospital in Brisbane Queensland, and finally diagnosed me with FND, said this was what you have, go home and google it, and that was it, however 14 months later no follow up and I was getting worse, I was sooo frustrated I approached a known doctor from the Endocrinolagy department for help and sent a referral to the Mater Hospital in Brisbane and have had wonderful support by not just one but 5 different specialist that specialise in treating people like us to help better cope and mange FND and they do listen, and help us try and find a way to improve or find the source of what triggers our FND ( such as Physio for FND, Occupational therapy, Specialist that helps with balance and vertigo etc). I do not know where you are in Australia, but I hope you do find a supporting team like I did, as I have 2 young children and a husband but they do not understand FND, what we go through and so we try to be as normal as we can for them, but we suffer in silence.
Maybe they could model on what happens in pediatric practice, Mat. I think if you google Conversion disorder in Australian pediatric practice - Kozlowska it should come up.
Hi MatAs a fellow Aussie I just wanted to let you know that your frustrations are shared. It takes a huge amount of time effort and having to be vulnerable to build a team of people around you who actually know what they are doing, not even factoring in the expense. For such a common diagnosis the support is fairly lacking.
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