What causes FND?

[Katethegreat]

I was told that the cause of FND is somewhat unknown. My neurologist said it is most likely due to too many head injuries and very traumatic events. She said due to this my brain rewired it's self to manifest pain and emotions physically rather than psychologically. I'm not really sure I buy this though? Hard pill to swallow. What are your thoughts on this?

[cgarff]

Hi Katethegreat, You have come to a great place for someone being diagnosed with this disorder. This group of people on her really care, and want to help provide answers if we can, or options that have helped us because we are all going through this Hell together.

some sights you can research from are FNDHOPE.org, and functionalmovementdisorder.com are both great places to help find answers that you may be looking for. They have been a great help for me throughout the years since my diagnosis.

FND can have many different causes, and non at all really. I don't know if they really know everything that can contribute to this disorder because it is such an umbrella diagnosis. By that I mean it is a disorder that if the doctors can't find anything wrong with you medically, they seam to throw you under FND because it is so broad in symptoms etc..

I myself have had several things that could contribute to starting this, and can't say it is from one thing or the other really, or it could be from everything. I do have (trauma) in my past as a child, I have had multiple surgeries throughout the years (anesthesia), I caught a (virus) back in 2008 which I originally thought was the root cause of this, but I also had (medication) issues that I believe helped to contribute to this as well.

I have been told by doctors for years that its all psychological, that yes, that my brain has been as you say re-wired to react incorrectly to different things, and that I need to just accept this as it is, and I should go to psycho therapy like a good girl and that should solve my problems.

Well, I have been through 6 therapists and a psychiatrist who was a complete idiot in the last oh gosh 6 or so years, and have only liked one of the therapists (who isn't giving up on me like the others have). She has tried many different alternative things with me, more than all the others, and is helping me to deal with the trauma that I have had, but doesn't think that this is all due to conversion disorder which is what they call FND or FMD now days. I have also been through 4 speech therapists, and 5 neurologists to finally find one that doesn't believe it is all psychological, and also isn't willing to give up on me like all the others have in the past. With these two women on my side, I am in hopes that I can get some help. Oh gosh, I almost forgot with all those doctors and therapists, I have also participated in studies at NIH in MD to help find answers to this crazy disorder. And yes, they did originally say it is psychological as well, but they have found some things that may change that answer.

Look up: journals.lww.com/neurotoday...

an article by Dr. Carine Maurer at The National Institute of Health. Indicating that FMD/FND is not all in our heads.

They have found some patients through an fMRI that there is something medically that could be causing this, not just all psychological.

As far as the re-wiring thing.. I found through one of the sites listed above that a good way to explain it is.. Our brain is like a computer (hard drive really).. and FND/FMD is like a virus that the computer gets. Given the complexities of that hard drive, and what all goes into it to make it work, it makes it difficult to truly find if there is something really wrong with the hard drive itself, or if it is just a virus that is effecting it, causing the computer to mess things up, cause disturbances in the programs it runs.. such as the crazy movements you experience, seizures etc.. (re-wiring) the problem is, they are struggling to find the anti-virus to fix that virus that has invaded our computers (brains) to get them back to normal. There are some treatments out there, more out your direction if you live in NY actually, I live in Utah where there isn't much available to me. But you have more options out there than you know of. NIH in Bethesda MD, Mayo Clinic, Brown University if I remember right, and in Kentucky: uoflphysicians.com/sites/de...

This MoRe program at Mayo and in Kentucky has if I remember right a 78% long term success rate in helping to recover from FND/FMD. I tried getting in a few years back, but my insurance said that 78% success rate wasn't good enough for them, and apparently would rather put me on disability instead. "IDIOTS"!

The sooner you can get help though, the better from what I hear. The longer you have this, the harder it is to recover. I saw your previous post about medications, and I have mixed emotions about them all. Sometimes it can just mask what is going on, and isn't getting to the root of the problem. If you do have some trauma in your past, it would be wise to deal with it through a therapist that knows about conversion disorder/ FND/FMD.. It is not easy to find sometimes. And if you don't feel good about them, then keep looking. Don't stop till you find someone you are comfortable and is not willing to drop you like a hot potato because they just don't understand. Also the same with a Neuro. If they just say, its all in your head, get more opinions. Don't let them just throw you overboard like you don't matter! It is worth the fight to find someone that cares, that isn't willing to give up on you. I remember the day I met my current Neuro, I hated going to Neuro's because it was always the feeling like I had no clue, and they were Gods greatest gift to man. Yet one after another would say I have no clue, or you have FMD, there is nothing I can do for you, go to therapy. But the current one I have was disgusted by how the others treated me. She, for once wasn't willing to throw me under the bus. She wants to help me, she truly listened to me, and takes my questions and runs with it. She tries different things, and if it doesn't work, then we keep looking.

For example: Recently I asked about all the seizures I am having. All the MRI's and EEG's I have had through the years have said I am very healthy, and that nothing is wrong. However the question I presented her was.. well, I have had EEG's in the past (during working hours), all look ok, however the majority of the seizure type events I am having usually happen between hitting the pillow at night, and waking up in the morning. They aren't happening as much during the day. So she did what is called a 3 day ambulatory EEG. You are hooked up to electrodes for three or more days, day and night, you also have a video on you, and a small computer to alert when you are having an episode so they can put the video, and info from the electrodes all together and see what is going on. My results came back about a month ago, and she found out that I am actually having BOTH non epileptic and epileptic seizures. It wasn't all in my head as I thought!

So don't settle for one persons opinion. Keep trying. Don't give up. If you haven't had this for long, now is the time to strike. You need to get help now while you can turn things around (hopefully). I have been dealing with this for at least 8 1/2 years that I know of, but maybe even longer. I keep trying, I keep hoping that something will work. I have my up days and my down days, I have good and bad moments, all of which are very unpredictable like all of us out there. This disorder sucks, it robs us of our normal every day lives. It puts us through so much pain, mentally, physically and emotionally. It turns your life upside down and can be very ruthless. Look around, do your research, and most of all "don't give up!"

Sorry this is so long, but I hope it has been helpful for you and any others going through this. I wish you the best, and am here to chat with anytime you need.

Best of luck to you and Hugs your way.

Cheryl

[ViktoriaC in reply to cgarff]

Really interested to hear the majority of your seizures happen at night Cheryl. I have seizures ONLY in my sleep and have met with the same issues you have faced with your neuros. I don't see the specialist until September but looking forward to having a portfolio of 'ammo' to state my case! Lol! 😜

[cgarff in reply to ViktoriaC]

Wow not till Sept? Yuck. I'm glad I was able to give you something to look in to. I think we just have to be on our toes with this one. Being out own ideas into it as much as possible to get the help we need, I would definately get as much as you can, make the Neuro work for once on this, not just throw you out because of the diagnosis. I feel it has a stigma about it. Docs see it, and automatically think.. Nothing I can do, let someone else handle it. Well there are things they can do, they just need to get off their butt and do something, actually look, run tests like the ambulatory eeg. It isn't cheap I'll tell you that, but it was worth knowing I wasn't just making it up, that is for sure. My doc actually said afterwards that this was more of an issue that previously thought, which was nice to hear in so many ways ya know? Bad that it's actually real, but good in the same way.

Oh I hope they will actually do something for you. Please keep me posted. I'm so sorry you have to go through this too. I'm just glad we have this site to know we are not alone in this and to get help and ideas to try. It makes all the difference.

Hugs to you today. Take it easy.

Cheryl

[Hidden in reply to cgarff]

Sorry I did read your post but just repeated some of what you said. Brain very tired this week 😴

[cgarff in reply to Hidden]

No,worries Amelia.. Fnd stuff is good repeated. Ha ha. The more tired we are, the more it is welcomed. Hugs

[Hidden]

KatetheGreat

Hello Kate. Friday is my day of rest but I can not resist the quote that you cited.

In my opinion, the brain could not and did not rewire itself to manifest pain and emotion physically rather than psychologically.

No-no....

The body including the brain has the continual capability to self repair when there are physiological insults. For me, people use the term "re-wiring" inter changeably with what the body does when something goes wrong.

Our circuits can find ways to reconnect if they are damaged so they can try and function again. This is not rewiring. It is modifications to our existing nervous system in an attempt to regain function that they had before. The question is can these modifications ever return you to the state of normalcy that you knew beforehand.

Pain and emotional manifestations are not mutually exclusive events that can follow selective outlets at will. The body, brain and mind comprise the whole body, at least for me, and damage to any one affects the whole.

For me, this is why ongoing damage to my system keeps creating an evermore complex set of issues. This doo-doo evolves!

For medicine, it is really impossible to pinpoint one culprit to this because there are simply an unlimited myriad of interactions going on at the molecular level simultaneously that can dysfunction and all of that gets impacted by external stimuli (I.e. Nurmi's famous stress factors) that we experience in daily life.

But no, the brain just does not suddenly switch roles in how it manifests pain and emotions from psychological to physical occurrences.

I certainly wish this disease were that easy. My opinion. I am not a doctor. Keep questioning. This is tough...

Dan / Seattle

Happy weekend. Don't let this consume you like it did me

[Katethegreat]

Thanks for your input! It never settled with me either. My thoughts were if the brain could rewire itself to do the bad things it's doing to us than why couldn't it rewire itself to do good? Answer from a doctor...oh it can you need to use cognitive behavioral therapy lol that's a load of crap. I didn't use it to rewire it in the first place. Makes no sense. My mom's a therapist...even she is perplexed and says this doesn't say psychology to her. Thanks again.

[Hidden in reply to Katethegreat]

KatetheGreat.

You and mom are smart people. Stay on right track

Dan / Seattle

[_confused_]

Hi, well I saw the neurologist yesterday and feel quite shocked when after he saw my jolting forward when sat on the chair throughout the consultation and the resting hand tremor amongst the other symptoms, numbness, fatigue, unsteadiness on my feet and falling over, yet apparently it is all psychological? ?? Nearly losing a job I love after being a liability for being unstable , I sure am not putting on any symptoms. I feel angry that these neurologists can't find answers so are fobbing people off with any excuses. I came away confused and no explanation and no help how to treat all my symptoms . Hope you find some answers soon.

[Hidden in reply to _confused_]

_confused_

Seems to me you are on right track too. They have taken me for a ride for 24 years now. Do not hop on this train. Find another way.

Dan / Seattle

[_confused_ in reply to Hidden]

Hi Houseman,

Well I certainly won't be going back for any advice or insults from their so called profession, I will just deal with it myself. Sad to hear that so many people are being treated so badly and denied proper care and advice but it's good to hear about people's stories on here and getting support.

[cgarff in reply to _confused_]

The problem is, you can't give advise, when you don't have a clue!

[_confused_]

Hi Katethegreat,

Well I was recently diagnosed on Friday with fnd, and at no point was it mentioned about head injuries or traumatic events. It's just their way of fobbing people off with an excuse because I have had neither, never go to the doctors, until this began, not on any medication, am very happy in life so he couldn't find a reasonable excuse for mine other than how he carefully worded it " psychological " . Ha so I have and still am imagining the awful symptoms am I ? It's like most things here in the UK , if they can't find a reason they normally fob you off with some antidepressants , or drink more water . Hope you get some answers your looking for. Ali

[Hidden in reply to _confused_]

Hi,

the neck injuries or injuries either traumatic physically or from disease or illness to the neck, and areas of the brain in that section were my diagnoses combined with autoimmune diseases.

I did write a post on it as I am a health professional and have spent 3 years diagnosing myself.

Don't think anyone read it though.

I have actually got to a point through my own personal research of diagnosing myself with what is actually wrong with me, my gp, Physio, and 2 consultants are in agreement and waiting to see me. And it's not FND although I would have been stuck with that for another 40 years if I live that long.

Was planning on sharing my findings but as no one answered my posts I gave up.

[Hidden in reply to _confused_]

Also you might say you have never had trauma but everyone has had trauma of some sort even if it is just a cold.

We don't understand how something that appears so simple can do so much damage so unless you have never left your house in your life and never had any illnesses there is a possibility that an illness such as a cold has invaded the bloodstream and brain.

I know one nurse who went into multi organ failure who was 20 and perfectly fit and healthy and caught a cold from a patient. She died a month after graduating from university and starting work.

I got pneumonia and have a collapsed lung and scarring to the other lung from going into a room where a baby had a particular brand of cold I usually avoid, that affects my immune system badly and was off work for 4 months.

Like you I was fit and healthy and doing 2 senior jobs and in the prime of my life then did have trauma but so do many and go back to work. Iv been off work for 3 years now. With 4 degrees rotting away in a cupboard.

[cgarff in reply to Hidden]

You know what kills me about this.. Trauma, no trauma, virus, injury.. What ever started this all.. Like you say EVERYONE has one thing or another all over the world.. Why aren't there more that deal with this? Why isn't this more widely known? Are we just special? Do we have some sort of gene, antibody or something within us that causes us to have these issues out of the blue? I know many people who went through abusive situations, trauma, illness etc.. That don't have these issues, it's just maddening isn't it? Ijust don't get it!!!

[Hidden in reply to cgarff]

Argh just sent you a long answer to this and didn't save.

Short version-

Think there is autoimmune issues

Brain stem issues either from direct accident trauma or illness affecting those regulators in brain

Genetic factors as 50 to 100 years ago this may have been going on but it's lost information now

Then getting more technical as some of the more experienced with this mention dopamine and other chemicals or neurotransmitters that affect us

But financially how much testing will we get to get to the bottom of it?!

[cgarff in reply to Hidden]

It's all crazy isn't it

[Hidden in reply to _confused_]

Also agree with you in the U.K. Because I come from Australia where you have a consultant for everything, here I believe? The GPs are discouraged from sending you to a specialist.

They know you won't get testing you need such as scans etc and it seems to be a staple that if really sick you might get an X-ray.

X-rays show very little. I can say that as a fact. Usually they are the first step as they are the cheapest but if they don't show what the doc thinks they are looking for then they should move onto CT, ultrasound, MRI etc. The NHS will just not pay for this.

I had 5 cancelled Mri's here so went to Australia and paid for my own.

Also then the consultant gets to say there is nothing wrong and shoves you back to the GP. I feel sorrry for GPs in this country and can see why there is a problem recruiting and retaining them. I'm lucky I have a good one.

It's obvious there is something going on with all of us.

We are not coincidentally a crazy bunch of people from all over the world who had never heard of FND, with similar symptoms and decided rather than continue on with our lives we would rather become housebound and in need of carers as many are.

I would love to go back to my job tomorrow. I loved my work and was already in a job I loved but went back to get a masters to back up my experience. It's still in the envelope it came in.

[cgarff in reply to Hidden]

Wasn't that out goal in life to turn our lives upside down and to Hell and back? Gosh I /we must not have received the memo.. Ha ha ha.

[Katethegreat in reply to cgarff]

Yeah I must have been out sick that day LMFAO 😂

[_confused_]

Hi Amallia,

I had an mri, all came back clear which was reassuring, but as it was clear the neurologist dismissed anything else so I have to trust his professional knowledge. I can't fault the fact that the doctor pushed for an mri quite quickly when I developed my resting tremor , so they did the right thing. I think that because I have been made to feel like it's all in my mind, that if I get more symptoms, I wouldn't be happy to go back to the doctor. I hope you get your appointments and find some answers soon. Best wishes Ali

[Hidden]

If you don't feel comfortable with a doc don't go back. I complained about Mri's being cancelled then the neuro reply was that I had complex psychiatric needs or something like that. I do not. It was their excuse for making up lies that I found out by accident through this complaint, even still I got dumped no healthcare so I was lucky enough that I could go to Australia as I'm born there and the public health is 1000 times better and got my Mri's and the test for the disease I know I have but was being ignored.

I threatened to sue the NHS and everyone stopped the psychological comments.

This site is good because everyone has different symptoms, experiences and treatments so go with what makes the most sense to you and be polite but firm that you are not psychologically unwell but maybe the neurologists might make you psychologically unwell as you felt great before meeting them!

I don't have the neuro symptoms that a lot do mine are mostly physical but Iv seen some good advice here for things like twitching, tics etc so good luck and I think stress is a big factor.

Maybe we weren't stressed before but this frustration of a diagnosis with no answers and in many cases rude, dismissive or disbelieving doctors can cause stress. Then they list stress as a factor but is it caused by this or did we have it before then many conveniently add it on and want to give us psych meds. It seems to be the answer to everything today.

I hate even having to take pain meds as I eat really healthily and was really healthy before that, I won't be happy until I'm back there.

[Starrynightz]

I was just diagnosed with FND as well. I think it’s a load of crap. It’s a lazy diagnosis given to patients when the doctors cannot easily find out what’s really wrong or when tests are unable to detect it. For example, they make medications for people with HIV that ensures they will be “undetectable” they still have HIV but this medication make the test unable to detect it because it lowers the amount of markers produced which the test identifies. We have diseases that are undetectable and so they make up “disorders and syndrome” to describe the symptoms but it’s not an actual diagnosis in my opinion. They have not made corrections to reference ranges for tests in a long time, it’s irrational to think after years of evolving diseases and synthetic medications these tests are still accurate enough to detect and diagnose diseases in everyone.

[annapugh]

As far as I know FND doesn't have a known cause but somethings have been known to trigger symptoms such as what your saying like head injuries and traumatic events.