Does anyone experience difficulty to be understood by their GP regarding FND due to a lack of expertise in this field? When I discuss my matter with GP he thinks it's all about LBP and headache, but it's not as simple and straightforward as that, I have a list of other symptoms, from simple ones like constipation to seizures and everything in between, but don't seem to be able to get the message across to my GP. Sometimes I leave his office feeling misunderstood and not heard. Since my last seizure I am very sensitive and emotional so this really affects my mentally and then obviously as a result my physical health. Should I just move on and change my GP or is this a common experience and I just have to accept it the way it is? FYI my GP witnessed seizure episode about 5 weeks ago as I had 30min attack in his office.
Lack of disorder knowledge by GP - Functional Neurol...
Lack of disorder knowledge by GP
Hello,
From my experience and perspective, what you are going through with the GP is very very common. The disorder is relatively new and complex so the doctors just are not aware of what is going on in the brain and in the body. I experienced all of this myself.
My recommendation is to find professionals that have experience and education with FND. They know what to look for, they know about the triggers and they have good ideas how to treat. The disorder is complex because it falls between psychology and physiology. The professionals I found to be helpful are Neuropsychologists and Neuropsychiatrist for diagnosis and treatment, but not all of them have experience and education in FND. They are the most qualified to make a diagnosis. But at the same time they can also help determine if there is any organic damage to the body and brain driving the seizures which is important to rule out. From what I hear from the doctors most of the time the symptoms, even extreme, are driven by FND which is basically like the software in a computer just not. running the energy through like it should, the hardware and wires overheat and you get irrigular energy movement which does not allow the signals from the brain to correctly tell the body how to move. From my understanding the seizures are a part of the shut down process. Parts of the brain basically shut down some body systems so it can re-boot and cool off. The core of the FND disorder is the emotional part of the brain does not know how to process emotions. Otten people with past or current trauma are more susceptible. Emotional trauma or physical like combat vets.
I might recommend this book. "Psychogenic Non-Epileptic Seizures by Lorna Myers PhD. First Half is useful. Not so much the rest to understand what is going in your body.. ** But before reading it make sure to get a diagnosis from a qualified FND doctor I think. You might have to be patient. It can take a while to get in. If it is FND, the symptoms can be very dramatic and you might feel like there is something major wrong when organically all your brain hardware is in good order so try not to be so bothered by unexpected physical events suddenly occurring. FND is very manageable if you know what to do and take action and also recoverable so I would keep that always in your mind. Not like other serious illnesses.
Fiinally nice work coming onto this site. It will help you a lot I think because there are many people on here that are diagnosed and successfully navigated the illness. You can learn a lot from them and worry a lot less. Anxiety is a key driver of the illness based on my understanding of it.
Cheers!
Pat
Hello Pat, Thank you for your answer and advise. I was diagnosed a year ago, I live in Ireland and we have very few specialists with FND experience, I am on a waiting list but it's 4.5-5 years waiting time, more than ridiculous if you ask me. I keep trying to find private specialist, but since I was paralysed and went through rehab to regain my walking there is not much more they can do. I was very positive, sane as you are now, about my disorder a year ago, I regained my walking, slowly built back my fitness level, was having symptoms every day, but they were manageable until 5 weeks ago I had a flare up, and yes stress was a cause... I developed new symptoms, my recovery is much slower than a year ago, I feel this time affected me worse both physically and mentally, there are days I spend 9 hours in bed with migraine type of headache, pain is so bad I can't open my eyes, I have feelings of seizure, but whole body shakes does not appear, I get something like bad vertigo feeling, I can't watch TV, listen to radio, read books, they all make me tired, if I have a good day and try to work on my laptop about an hour in headache gets so bad that I have to stop, 1k slow walk is too much for me, and even I understand my GP has a lack of expertise in FND field I still feel I'm not being heard. I ask for medication to help me with migraine pains, just one tablet to get me thru the day, he tells me to change the way I'm taking my current medication, but this has zero effect, I feel like I am not getting help at all and I am going through the hell here. I understand what you're saying regarding recovery, unfortunately my findings are that the quicker you get help and if your symptoms are short term the bigger chances you have to recover, I'm in this a year now, I believe chances get slimmer and slimmer as time passes
Well talking about it is key. Group or just therapy. That produces good energy and gets rid of the bad energy and that is basically what we are made of. "Good Medicine" you often hear is a term relating to mind, body and soul. Maybe one of those areas could need some assistance so maybe give that some thought. The body and mind need the good chemicals made by the body to heal and cope with challenges in life. The body and mind can do amazing things given a chance.
I don't think you need to re-invent the wheel because there are lots of people in your situation around the world and maybe keep tapping others knowledge. I do think inflammation is a huge driver that is often driven by stress and diet so maybe look into that. Just throwing some ideas out there. Most illnesses and diseases start with inflammation.
Hang in there!
Pat
Hi, I have long term Motor FND and have done the UK Rehab program for FND.
What we all hope for is that our GP will be supportive and helpful in reducing symptoms - and frankly that is all they are paid to do on a regular basis (whatever condition has been diagnosed). Some are better than others, but ultimately are only aware of the FND title not the actual meaning of the condition. Even the medical definition of Functional Neurological Disorder states it is both a Mental and Physical condition!
It is all about financial budgets:
GP's do not go beyond 'Primary Care' i.e diagnose basic needs and support with low level prescription medications
Regional Medical Trusts get Government funding to support Hospital Needs
Specialists / Consultants can tap into either GP or Hospital budgets and order additional services or enter patients into research/trials etc.
Specialists in FND do the following:
Explain HOW the symptoms affect you, not WHY they affect you.
UK FND Rehab (several years ago):
Based on Cognitive Behavioural Therapy i.e retraining you to think differently about your symptoms.
Neurological Physiotherapy which is similar techniques to people who suffer Multiple Sclerosis, Parkinson's Disease and Stroke
Occupational Therapy - all goal driven to the individual's needs.
If you want support in Explaining FND then go to the Websites in the meantime:
Note: there is a British FND Hope website but it is a satellite and not as good as the original USA version.
If you want help in techniques to manage your daily symptoms then get the Rehab recommended book:
'Overcoming functional neurological symptoms a five areas approach'
multiple authors but Professor Christopher Williams is listed first
ISBN-978-1-444-13834-4
If you want tips for improving your session outcomes with your GP here are a few:
Be Very Clear and Concise what you need to achieve that session:
See your GP with one key distressing symptom at a time, if physically visible symptom all the better. Tell them you need help managing this symptom to make your life easier, while waiting for the Specialist appointment, and that FND is common, over 400 people a year are diagnosed with this so 'not all in your mind'.
Medications for FND:
Antidepressants - have had some positive effects with some FND Sufferers (both short term and long term)- but there is no magic pill for this condition and no magic cure.
Painkillers - have had some positive effects too with pain management.
Speech issues - have had success with Speech Therapists but takes time around a year to recover.
Digestive issues - very common remember FND affects muscles, signals and movement and the digestive tract inc. bowel is sensitive to this confusion. Try slowing down your meal eating and keep to routine times, most find smaller meals more often helpful too. (I personally tried finding which foods made things worse and gradually removed them from my diet). Hydration is also a key thing to watch, make sure you have enough water - the brain & spine do require quite a bit to remain healthy. Reduce or cut out caffeine if you can and any other diuretic's. Apple juice is good for raising blood pressure, balancing electrolytes if you feel foggy or low energy brain!
SELF-HELP/ MANAGEMENT:
Non-Epileptic seizures in FND:
UK Rehab treated these with stress management, meditation and stopping of Epileptic medication, at least when I did the course. One of the patients found Stress Reduction guided Apps on their mobile phone good to ward off an attack, when they felt their stress levels rising. There are loads of these free Apps out there!
Panic Attacks:
Common with FND because the brain and body get out of sync. They will pass and you will get your Adrenaline back to normal, but duration is very much individual. Sometimes you can trick your body out of survival `Fight, Freeze, Fight' mode by doing several things,
1) Regulate your breathing, 3 deep breathes
2) Focus on 5 things in that place, colour, smell, sound etc i.e distraction technique
3) Sip of water or small snack, this forces the digestive system into play and can convince the brain you do not need to 'shutdown any unnecessary systems' to survive - all is still ok!
Pacing:
Each day try to maintain a medium level of activity (even if bad or good day) and try and split up tasks into Mental, Physical and Emotional areas, because these are the 3 most stressful and tiring actions of your brain and body so cause the most fatigue, coordination issues.
Do not let others say what you should or should not do at what pace, you know yourself best and can usually find out what works for you, what your triggers are and everything can be done eventually with the right adjustments and time.
Major activity/ events try and break up with downtime days in between; to allow your brain/body to sort of reset.
Sleep:
Broken sleep patterns are almost universal these days with everyone, but with FND it is hard for both the brain and body to synchronise enough to switch off. Again a set routine of bedtime and getting up time is a help to boost the chemical processes at the right time. Never panic about not sleeping, the brain and body will always take what it needs and even if not asleep while in bed, you will be physically resting anyhow.
Positivity:
FND means your brain is unable to understand certain feedback signals from the body and has confusion prioritising what needs to happen. I usually tell general pubic "I have a brain condition which affects my coordination, similar to MS" and leave it at that, because most people have heard and understand what MS means.
If you cannot achieve something there and then, for whatever reason, stay calm, do not panic. Accept there is a slight brain hiccup at that moment, but it will resolve itself enough for you to try that task later or in a different adapted way. Better to reduce anger/frustration and crying, go more in the 'can do, but later' laugh off the disaster mode - this reduces the adrenaline rush into `Fight, Freeze or Fight' survival mode and helps the brain recover quicker.
Good luck
Look for the calm in the Storm!
Hi Brokendeer, thank you for being so supportive and many tips. I am visiting both your mentioned websites often, I will definitely have a look at the book. Sometimes all we need is to talk to people like us who knows and understands how it feels, who is in the same shows. My digestive system only seems to be bad when I have a flare up, after first attack pain got better as time went, I didn't need antidepressants, now my second big attack left me very sensitive and in big pain, so I am taking everything, sleep is also affected, I've never been an early mornings person but now I'm up before 6am, however I'm in bed early too as I'm too exhausted in evenings.
David Tuller (the investigative journalist who is looking into the actual (rather than reported) prevalence of FND included this very interesting reference in his latest blog which you might find useful 10.1080/09638288.2022.2155714.
Have to say I haven't read all of it yet but it might be worth sharing it with your GP so they become more aware of what people with FND are dealing with on a day to day basis. They may not have the expertise to help you (and I've read your comment about the waiting lists and lack of awareness where you live) but understanding and empathy from your GP can go a long way, whatever conditions we're experiencing.
Excellent article...thanks for sharing!
My pleasure Poseypink, but the thanks should really go to David Tuller 
I think it's rotten that people with FND have to put up with the symptoms as well as the stigma, especially since a lot of it arises due to interactions with health care providers. Could be said that it compromises Human Rights, especially since once people are labelled with FND it's a) hard to get rid of that label from our electronic records and b) it gives people automatic entry to DSM (whether they like it or not) and there's still a lot of stigma about mental health disorders too. We should all be treated fairly in health systems but we know this doesn't happen when we have these labels.
Simona35 - apologies since I realise the link I sent didn't go live but if you copy and paste it into a browser the paper should come up and the first part of its title is A meta-ethnographic synthesis of the experiences of ...
Hi 210272, thank you, I'll definitely look into it
I personally gave up looking for help quite some time ago as I find more success with clinicians in the actual field of what the symptom is, for example, I had a throat issue and had never heard of swallow problems so I went to my gp spoke about the throat and nothing else got a referral, this led to a seated MRI scan and a diagnosis of a slow close over of the oesophageal with a problem for the fit, meaning I was aspirating food leading to chest infections and a build up of food debris. Now time with speech and language , and then a dietician and problem now managed, likewise an issuer with the eye and that was looked at by the optician, issues attended to and problem now well managed. I could go on but you have the gist and I will always recommend you to visit a specialist in the field of any given problem. It wont take your FND diagnosis away but life will be more comfortable. Having gone this road myself I asked my GP about the FNDdiagnosis letter and asked him what are my symptoms baring in mind everything has now been attended to and he said there are non mentioned here so what is the care plan, well with no symptoms and no care plan can you explain why I have the diagnosis and he said no and would make a note on my records. This is my personal story and it seems to me that I got the diagnosis because my health issues are complex
Maybe you could summon up the courage to ask the GP how many patients with fnd that she has dealt with before? I did, and on hearing a polite, well only one, but one with minor symptoms, I then referred her to the bmj article of Jan 22 ... she did not mind. On my next visit, she told me she had read it. It;s a start.
"Does anyone experience difficulty to be understood by their GP regarding FND due to a lack of expertise in this field?"
Oh yes ! It's really common !
Hi Simona35,
New Dr.
I think you know already, and I can tell you there is much better out there. I suggest asking for a referral to a GP who has a lot of knowledge on FND or seek out one who specialises in management of chronic illness, this is where I have had luck.
You should expect that you can be heard for ALL of your ailments not just the one your GP thinks is most important. Your appointment should be long enough to get through this and feel heard. Your GP should be open to your own trials and research. Your feelings and frustrations are valid.
My previous GP had some unhelpful advice and didn’t offer anything to me to help cope aside from anti depressants which I reacted badly to. He was lovely and had good intentions but when I began to list my symptoms he would say Yea thats what FND does and I felt like I was free falling. I had a lot of guilt about looking elsewhere as he is our family Dr. But a new Dr joined the practice…
My new GP’s main interest is managing chronic illness. She immediately did the following:
Full health assessment with the nurse where I got to list every symptom I experience and how often. Along with Obs, height, weight, history etc
Then she began a Health plan where she tried to treat as many symptoms as possible.
She chose a few to start so i dont get overwhelmed
Migraines: trialed 2 types of medications so far and perfecting the dosage
Sleep: trials 2 types of medications so far still searching for what works
Food intolerance/IBS: i saw a dietitian for a month
Physical movement: see a physio who specialises in nervous system support and is helping me a lot.
Our appointments are thorough. My GP takes notes of everything. I am still in the midst of it but having this type of GP gives me Hope and also has shown me how multifaceted this condition is and how many different specialists can help me.
Make the change, do it a few times if you need. Even call places and tell them what you need; a GP who can provide long appointments and has experience and interest in managing chronic illness and hopefully a FND patient already.
hello,
i understand how you feel my speech is a bit slow at times my balance is off when i turn left or go backwards that are my only symptoms for a year now my family doctor referred me to another neurologist here in louisville and that doctors office refused me i dont get how all these symptoms i dont have but its called FND
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