What treatment(s) have you done? What are your tips to a FND Newbie?

[Julie729]

The Neurologist just said "find a CBT therapist" and would not make a recommendation. Really looking for ALL IDEAS from WESTERN medicine to EASTERN to HOLISTIC

And any research projects recruiting ??

[Jofisher]

My tips would be learn all you can about the condition, surround yourself with friends and family who are supportive and pull away from those that aren’t. Only see health professionals that understand this condition and are going to put you down and make you feel bad there’s a lot of these out there. Also Reduce stress as much as you are able to and Pace Pace Pace yourself. This is not giving into it it is learning to live alongside it. It you fight it then you will loose any gains you have made. You won’t always get it right I still get things wrong even now but keep listening to your body and learn what makes your body happy. Good sleep hygiene healthy diet and move even if it’s short strolls but keep moving as these things are also important.

[Brokendeer]

Hi quite frankly your Neurologist sounds a bit like the one I originally had i.e unhelpful, unclear about a diagnosis and not interested in FND. I had to get a second opinion from a Neurologist with FND training to have a proper assessment, discussion and definitive diagnosis!

A good Neurologist should have referred you to a CBT Therapist with FND expertise.

If you are in the UK there are Mulit-Discipline specialists in London and several in Scotland, and I believe Leicester is now fighting to get a comprehensive program of Multi-Disciplines specifically to tackle FND symptoms? These were delivered by Outpatient or Inpatient departments at Neuro funded Hospitals.

The Multi-Discipline approach is considered the best as FND Brains need re-training to break the abnormal signal feedback issues caused they think by some Physical Trauma in the past. So most cover CBT as the core therapy, then Neurophysio (some Neurophysio's cover FND at local hospitals too and can be GP referred) and Occupational therapy with the option of a Psychiatrist consult.

Depending on your type of FND -there are many, many different symptoms people experience but all end up with the same diagnosis -will determine how successful any of these therapies are for you and your situation. Regardless of which country you are in, these therapies seem to be the only known options for treatment currently and all are pre-existing therapies simply repurposed and grouped together to focus on FND. Although Scotland I believe is had the best tailored FND programs as run by Professor Jon Stone who also has an excellent helpful website neurosymptoms.org

Understanding that FND is a sort of `short circuit' problem in the brain where normal communication to the body is confused and that certain things in your daily life will trigger more severe reactions. Learn what is bad and good, pace yourself to limit the Boom-Bust scenario and crucially accept that you will have to adapt your methods for doing things, but that you will eventually reach your goals. The longer you have the condition without trying any therapies the worse the outcome to reverse any symptoms, that said, if something does not work for you, do not despair just try something else. For example: by accident I found that holding something in one hand, while trying to concentrate on using the other hand made artwork more precise and easier - somehow this team cross-brain cell effort can boost my signals to the active hand? I know crazy idea, but it does work for me!

I have lived with Motor FND for 13 yrs now and for me it is all about keeping the Adrenaline levels to a manageable level, otherwise the `Fight, Freeze & Fight' Survival mode kicks in and basically overloads the already confused brain/body communication channels.

On a practical note, I found an Osteopath who included `needling' (a type of Acupuncture) this was great for relaxing my muscles and reconfirming my signal connections for a temporary period and another FND friend had good results with Acupuncture itself and I was told there is proof that Acupuncture does somehow affect the brain signals though as yet there is no concrete science to explain how exactly?

To some extent Neurophysio did help me, they generally deal with other Neurological diseases Stroke and Multiple Sclerosis, Parkinsons patients - so finding an FND experienced and POSITIVE Neurophysio who will listen and set achievable goals is ideal.

However if the main trigger for your symptoms is more a trauma in the past, depression, anxiety, fatigue then an FND CBT professional and/or FND Psychiatrist may be the better route for you initially. I did CBT but not Psychiatry and tried for a short period Anti-Depressants (which unlike popular belief you can take just for anxiety and not depression, as it acts on the same parts of the brain that need calming down!). Again important you find the right medication to suit you, and you use them only for as long as is useful.

Do always stress to any medical professional that this is a genuine Neurological condition with actual physical changes in the brain - your symptoms cannot be dismissed as just `all in the mind', it is not under your conscious control, only limiting the severity of symptoms might be!

Look for the calm in the storm

[cspin in reply to Brokendeer]

what is cbt therapy?

[Brokendeer in reply to cspin]

CBT stands for Cognitive Behavioural Therapy , often classed as one of the `Talking' Therapies too. Used in may different contexts where there has been some kind of trauma, Post Traumatic Stress Disorder, Relationship Problems, Bereavement etc

Basically the CBT Therapist chats to you about what you think is causing your worries/ symptoms, then works through your issues by setting you tasks/activities that you need to mentally process, assess and rethink your reactions to them.

This gradual `Exposure' to events that cause your symptoms to become worse, is supposed to lessen your negative responses to them by having the CBT Therapist point out where you went wrong and to help you either overcome or cope with situations better.

So it is all about what triggers your worst symptoms and changing your mindset towards them i.e to acknowledge you have issues and then how to move on!

It is not for everyone, and is only really effective if you go into it with a totally open mind.

Hope the explanation helps?

Look for the calm in the storm

[Jofachiz1 in reply to Brokendeer]

Hi #brokendeer

FND by definition is a psychiatric illness. The idea behind it is that you have a suppressed trauma that is converting to physical manifestations. Part of the concept is also that you have convinced yourself that you have a particular illness and are incorrectly acting it out. Hence the basis of physiotherapy which is to distract you etc.

What you describe is the treatment of someone who has a true neurological disorder. An organic problem.

I am confused. Research proves that there actually is no real basis for the FND theory. Seriously. Research Freud, etc. it’s a joke.

I get so frustrated seeing people suffer when there are answers and real diseases that get misdiagnosed as functional and yet many more people could have much better quality of life if doctors knew about these disorders. I have a very rare disease that was deemed functional at first but now I have been properly diagnosed. Life was unbearable before I found a knowledgeable neurologist. And a genetic heart condition that can be fatal if left untreated, has also been diagnosed. My prior functional misdiagnosis could have killed me.

Hopefully one day neurology will catch up with science and find out people are really sick not just imagining it.

[Brokendeer in reply to Jofachiz1]

Lucky you at being heard.

I have done all the Multi-Disciplinary Therapies available to UK Patients and having read many a medical definition, FND is widely misunderstood by both the general population and indeed most of the medical professionals outside of FND Training itself.

Officially though it is classified as both a Physical and Psychiatric condition and even NORD (National Organisation for Rare Diseases) states the following:

General Discussion

Functional neurological disorder (FND) is a medical condition in which there is a problem with the functioning of the nervous system and how the brain and body sends and/or receives signals, rather than a structural disease process such as multiple sclerosis or stroke. FND can encompass a wide variety of neurological symptoms, such as limb weakness or seizures.

FND is a condition at the interface between the specialties of neurology and psychiatry.

Causes

The exact cause of FND is unknown, although ongoing research is starting to provide suggestions as to how and why it develops. Many different predisposing factors can make patients more susceptible to FND such as having another neurological condition, experiencing chronic pain, fatigue or stress. However, some people with FND have none of these risk factors.

At the time FND begins, studies have shown that there may be triggering factors like a physical injury, infectious illness, panic attack or migraine which can give someone the first experience of the symptoms. These symptoms normally settle down on their own. However, in FND the symptoms become ‘stuck’ in a ‘pattern’ in the nervous system. That ‘pattern’ is reflected in altered brain functioning. The result is a genuine and disabling problem, which the patient cannot control. The aim of treatment is to ‘retrain the brain’, for example by unlearning abnormal and dysfunctional movement patterns that have developed and relearning normal movement.

And while I take on board the older `Conversion Disorder' theory is still doing the rounds (so to speak) it is totally outdated compared with new research and modern definitions based on Functional MRI brain scans- proving a physical change has occurred in the brain. That is why FND Patients are seen by Neurologists in the UK, not Psychiatrists anymore.

But then again, Multiple Sclerosis, Parkinsons Disease and many many more Neurological Diseases can also have an FND Diagnosis co-existing and they too like FND are cause unknown!

Look for the calm in the storm

p.s Regardless of whether my FND Diagnosis is correct or not - the UK Medical Profession has no intention of looking for any other disease and Multi-Disciplinary Therapies were the only option available to help me manage my daily life. So not much different long term really to any of the other major Neurological conditions that they currently do not understand fully?

[Jofachiz1 in reply to Brokendeer]

Hi. Sorry if my previous post came across harshly. I have edited it and explained my frustration at FND as a diagnosis.

[Julie729 in reply to Brokendeer]

Next trip to UK I would LOVE to meet you! My bestie live in London and I have not seen her and my Godchildren since October 2017 ;(

[cspin]

I don’t know how it manifests for you, but for my daughter it impairs her balance so she is unable to walk, among other syntoms. I will share what we have been doing:1 - diet- i believe this is all because of a virus so we did a diet and included supplements in the hope to eliminate this virus ( epv)

2- acupuncture- we found an acupuncturist that is actually able to bring her to a completely normal state. she walks again, no more pain, no more syntoms. But it is temporary and we can’t afford to go every day.

3- phisiotheraphy- exercises every day to build her strength

4- functional neurologist treatment- our last resource was the treatment with a very knowledgeable functional neurologist. he gives her some eye exercises. at first he evaluated my daughter and was able to locate her issue as been caused by the cerebellum, so he gives her some directed exercises for that.

she is having a slow progress and recently started walking again. She shakes, gets very tired still, can only make around 10 steps, but is able to walk. A few months ago she was bed bound, then with a walker, now with crutches, but sometimes without any aid!

[Julie729 in reply to cspin]

HOW old is your daughter?

[cspin in reply to Julie729]

she is 10. 9 when it started.

[cocoferraro]

What about medication? you need medication that is suited to your FND, go back to your GP and complain! when you feel ,so ill. you need medication first before you are able to face family and friends, plus the right medication suited to you will help you function better and will be able to deal with every day life. Agree with others that stress is a big factor, if you cannot cope then you should again speak to your gp, I know I sound very crass but am thinking its ok to live with FDN, I have medication that suits me, a very good doctor who also sent me to rehabilitation, and is trying to control the way I feel, I know I can faal back on her.Agree with others, take entle exercise, only do what you can and if you have pain then get onto your gp again, do not have stairs, try to have grab handles everywhere, try to get a toilet that is a bit raised, and also you need a wet room so a not to try to get your legs over the bath.

NOW LISTEN TO THIS. fnd is nearlly always related to something that happened in the past.

eg childhood? bad accidents in adulthood, divorce, moving house, rape, being held againt ones will, horrific accidents, and so on being abused etc inchildhood. loosing ones job, finding out your husband/wife is unfaithfull and many other things.

Perhaps you can realise why you have FND, there is always a sad story if you dig deep.

I am so sorry if I sound harsh, but have had FND for 12 years, have right meds etc but still feel really ill and can understand where you all are coming from,but we all have to try to find a way of living and thats my goal. I have a loving hubby and a lovely place to live, what do you all think, best wishesxxxx

[cocoferraro]

Hello sweetheart,I agree with all that Jofisher says except your neurologist should have made you an appointment and pointed you in the right direction as to where you need to go. There is probably a rehabilitation centre near you where yoy also attend a clinic for FND. If I were you I would go back to himand say where do I go from here and what medication should I be on. Knobody likes to complain but sometimes you have to get STERN-for want of a better word, this is the only way I had help, although I do agree that help is better in some places than others, please go back, I wish you luckxxx

[Julie729]

I Was just diagnosed with FND after a 7 day vEEG and 15 months post-op for an Oligodendroglioma Stage 2 (brain cancer in right temporal lobe)

[Julie729]

First -

Thank you to all who replied at all!

Second -

I am a big researcher adn advocate for my health (or I would not have found this site!)

1) Neuro who diagnosis is NOT on my case anymore. She is not the type of doctor I would wish for ANYONE unless paitent has what SHE finds interesting and fascinating in regards to epilepsy

2) My GP/PCP is fantastic. My Psychiatrist who I have had following my from 1993 when he diagnosed my Narcolepsy is fantastic. My NeuroOncologist is fantastic. YET NONE ARE FND EXPERTS and are working with me to try to tackle this as best they can in a city where there seems not to be ONE SINGLE FND SPECIALIST! And I am in a town known for good medical care, and there are psch hospitals and training here but no one focused on FND!

3) TRAUMA - My trauma history is long and complex. I have read about all the Truama connections and I also have done CBT And DBT in my past. I do not use the tools daily on a concious level.

4) My circle of support is VERY SMALL especially due to covid. And even thought I live with mom and she has FIBRO and 'should get this struggle' she is part of my TRUAMA as she is not 'present' to me in the ways I wish she was. I have to ASK for a hug if I am crying in front of her. We went to counseling together and her attitude was just "that is not who I am"

[LouBL0u]

HiThanks for sharing your experiences. In the U.K. you can request re-hab. I attended the Rosa Burden centre in Bristol for 3 weeks. I was offered speech and language therapy, physio, OT, physchiatry, 24 hour specialist nursing team and my neuropsychiatrist sessions weekly. Thank you NHS💜

18 months on I can speak and move! I have had Accupuncture constantly too.

My FND was triggered by a blow to my head but in rehab pre verbal flash back occurred... I am now in EMDR for complex PTSD. The links between the symptoms for FND and complex PTSD for me are crazy! Hyper vigilance heightened startle response falling to the floor when triggered, losing speech- initially I was reluctant to think this was caused by anything but the bang to my head. I banged my head and my brain didn’t work. Simple! But now with the continued recovery I am experiencing I would love the FND professionals to suggest EMDR. I have done virtually every psychological therapy previously and this for me is like the Holy Grail!!

EMDR is working brilliantly for me and uncovered trauma I had no knowledge of.

This is a long reply but for me, the research and self advocacy is working. Good luck 🌼