Functional Neurological Disorder - FND Hope
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New Member's Thoughts & Concerns

New Member's Thoughts & Concerns

Hi,

I have recently been diagnosed with FND and I am more confused now than I was before the diagnosis. I am a serviced disable Veteran with several physical issues/ailments so the fact the my current symptoms is all in my head is confusing. I am reading 'Overcoming Functional Neurological Symptoms' in hopes if can provide me a path to recovery. With all my symptoms, I am wondering what recovery will be. I don't think I will every be the man I use to be.

Does anyone else share my thoughts? I sure hope so----because if not, then I am bat shit crazy!!!!

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Your not bad shit and I don't believe it's all in your head as most of us have been told just because the medical professionals don't have answers and you are not alone I feel as if I'm going crazy with a lot of symptoms I can't even describe but on a better day I push myself but bad days I just have to rest so try and stay strong God bless

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I apologize for the long delay in my response. It has been difficult or me to understand and accept my condition. Thanks for telling I am not bat shit crazy! To be honest I wish you said I was, at least then I would have a answer for my condition.

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Nothing wrong in bat shit crazy !!😝😝 I have spent the last few years battling with "but I used to be able to do this" and grieving my old self I tried fighting it and just became frustrated .I also won't be beaten by challenges and decided to look at it from out side the box .I'm finding bat shit crazy works in all different aspects of my life and if it doesn't then I will just laugh at it which funny enough helps me with the pain and to help me love the new self . PS dying to take mobility scooter over the local bmx track for some fun just trying to convince my sensible friend (my rock) to come with invade I crash again 😂😂😂😂😂😂😂

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I am trying to stay positive, but it seems every time I take a step forward, I will take two steps back the next day. My dreams are sometimes hard to deal with---do you know if that is common for FND patients?

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Of course its in your head! Either a bacterial or viral infection or damage after one, an autoimmune problem or scarring after physical trauma. Sadly its at the molecular level in the most complex organ in the world. As no-ones been looking for organic causes until recently and we probably don't have the technology to find them, it'll be a while before we can get accurate diagnoses of the underlying causes for each patient. They have recently found psychosis is an immune disorder causing brain damage in a percentage of patients who can be completely cured. Eventually we will get answers. Good luck, be kind to yourself xx

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Thank you for the information. Being kind to yourself is hard, when you don't even recognize who you are. But, I will try......

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It's not in our heads and doctors need to stop saying this to patients our central nervous system has been compromised some how weather is be from injury, illness, surgery, past trauma no one knows not even doctors know for shaw that's why there are currently lots of researchers going on ATM .No one knows if it can be cured either so far have no met a single person who has recovered and by that I mean no symptoms at all including fatigue and vag symptoms. No just beauce we have FND does not mean life is over yes we struggle , yes we are in pain , yes to do many things that have changed and things we can't do . But we are alive and we all need to start to except that and we need to now do things differently from how we did before. I might have FND and yes most days I can't get out of bed I never let FND define me I'm me the same me I was before only I can't do as much as I would love to . But everyday I also get to wake up and be able to see my kids and family and life is great I've come to terms with not being able to do the things I love ❤️ but exerting it also helps me to move forward and wondering why or how or why me doesn't fix it, just like people who have MS or Parkinson or any other deases that can't be fixed they have to learn to live with their new body ..

You are not alone and it's not in your head this is real

Ronwyn

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First of all, thank you so much for your service. It takes a rare person to commit themselves to improve the lives of others.

It's not 'all in your head'. It is a Central Nervous System malfunction. The brain sends the correct signal, but somewhere between there and your body, there is a mis-firing. The medical world has at least figured that part out.

I likened it to the wiring in my truck. I know that the truck can run, but somewhere along the system some of the wiring is compromised and it is not running correctly. I hooked it up to the diagnostic machine, but all it told me is that there is an electrical issue! It is up to me to trace back along each circuit, by trial and error, to find out which set of wiring systems is malfunctioning. It takes a long time, and it is frustrating.

I am 53 so I have had a long time to contemplate this weird disorder, and live with it, and rail against it, and deny it, and grieve. You will come out the other side in that you will come to realize that you do not have to live up to the world's standard of what a productive person looks like to be valuable to the world. There will be some of the most challenging days psychologically.They will pass, and in retrospect seem not as bad as they felt at the time.

I like to think of it as the most challenging puzzle I have ever worked on. If you dig down deep, it can be the most fascinating thing you have ever learned about.

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It was an honor to serve my country. If given the chance, I would do it all over again.

Your explanation of FND is one of the best I have heard so far. It takes the unknown and makes it relate to something I know. I wish more Dr's would follow your lead.

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Hi. Welcome to this wonderful world of FND. It seems that what you've been told is the old fashioned, out of date ideas about FND, where it was believed that it was all about us 'converting' trauma and stress into physical symptoms. I bought into that one too. They also believed that we were faking it, putting on our symptoms for secondary gain (That idea has been rejected by close to 100% of us lol!).

In the past 4 or 5 years only, FND has been moved from mental health to neurology, and the neurologists have found out more about FND in this short time than psychiatrists and psychologists did in decades of misunderstanding and no answers, and not even being able to diagnose it properly. At least neurologists can properly diagnose it now, if you have a hand tremor or weakness in a leg (or two).

Anyway, my guess is that you were very highly trained, on very high alert 24/7, with very little down time. FND is over represented in this group of people - first responders, child care and aged care workers, doctors and nurses in high pressure jobs in hospitals, etc. I haven't seen any ex military specifically diagnosed with FND, but I suspect that many of those with PTSD also have FND...it's just that PTSD is diagnosed first, and all of the symptoms are blamed it on the PTSD.

My thought is that in this group of people, the brain ends up in overwhelm and eventually meltdown, sort of like my computer that frequently goes into slow motion, taking 10 minutes to load a single webpage. It needs more memory, our brains need 'me time', time out, time to reset so you can start again without already being on overload.

So, it seems the best treatment is to slow down, stop putting pressure onto yourself, allow yourself to take time out to recharge those depleted batteries inside your head. I know that's not easy for a soldier. The very things that you were trained to do for your very survival are the same things that are now working to destroy your return to a happy home life.

I just wish that the armies of this world would spend time in retraining its soldiers so they can 'unlearn' a lot of the pressure cooker stuff that you needed to survive previously, and made sure that ALL of its returned soldiers get appropriate employment and emotional support that they need.

Interestingly, the army that has the least amount of PTSD in its returned soldiers is the gurkhas. They don't muck about, they train hard, they fight hard, they see a lot more than any human should see, but when they return, their whole society reaches out and embraces them, almost smothering them in the correct kind of support, and hence the low PTSD rates. The US does it better than Australia where I am. You have much higher casualty rates than we have, like 1,000 times more than we have, but your society does salute you, strangers sometimes acknowledge you in the street. Doesn't happen here in Aus, and we lose thousands to suicide. The authorities are only just slowly waking up to this fact, and starting to help, but it's way too little, far too late.

Anyway, back to you. Have your checked out the following websites:

fndhope.org - patient support, and with links to some excellent Facebook groups where you will get a lot more support than here.

neurosymptoms.org - written by one of the top 3 neurologists in the FND world. There are some real gems there.

The major thing for you to remember - it's not all made up in your head. This is a real neurological condition, with real debilitating symptoms that can be harder to treat than similar types of neurological conditions, but at least FND isn't normally terminal.

So be nice to yourself. Give yourself a break, a holiday, and take as long as you need to reset your brain.

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I had the honor to serve with my Australian forces. They where the hardest working but also the best at having fun!

The Dr has diagnosed me with PTSD but I don't think i am worthy of such a diagnosis. I have spent a lot of time in the VA and have seen Veterans/Soldiers who have PTSD and I know that my conditions don't even come close.

You are right about being on a high level of alert, it was one of the main factors in accomplishing our mission. Being medically retired from the Army, I feel empty and worthless. All my life I pride myself in not being the weakest link, being the Soldier that my fellow Soldiers could count on. I didn't worry about any weakness or shortcoming I may have because I knew my brothers/sisters where there for me. Now, I am half the man i use to be when it comes to fitness, I can't seem to keep my mind organized, I have issues with memory and eye sight, and I am have hard time comprehending instructions.

My relationship with my family has changed, I rarely go out and I have only a few friends. For some reason I don't want to be around anyone. That is not like me.

I am so sorry for venting/complaining.

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You are allowed to vent, but don't let the venting 'become' you. You are not the sum of your venting, your pain (physical or mental or whatever). You are the sum of all of your experiences, both the good and the bad.

Have you ever told your family any of the good stories of what happened during your service? Some of the humorous ones? My partner tells a story of accidentally starting a raging bushfire, then frantically putting it out with hurriedly laid wires and dets of some kind (I'm not technical). When the bushfire got to his line of defence, he pressed the button and the bushfire got blown up...and put out.

Perhaps you can start recording some of your memories, the good ones and the bad ones. A lot of returned soldiers use it as a way of reprocessing those memories, of re-filing them with a different and more remote set of eyes. This is a good thing, because you can be less wrapped up in the centre of the noise and strong emotional memories, and you can relive them in a less emotionally charged way.

(If this doesn't work for you, talk to your therapist about it, perhaps either how to make it work better for you better, or whether there might be something else you can do to re-file these memories in a less traumatic way.)

Don't belittle your PTSD. There is a whole range of PTSD, from minor to major. Even minor levels can be extremely debilitating and stop you from enjoying life. I know that...I have two or three compounding episodes that triggered PTSD for me.

The first was passing out 30 times in 7 days from the excruciating pain of passing wind or stools, in the first week after anal repair surgery where they forgot to give me adequate stool softeners so I got impacted with constipation. Not a good combination at all! I coped with the screaming, unearthly sounds and passing out. I even coped with 2 weeks of flashbacks to backing out of that long white tube, but I lost it when I started having flashbacks to the first 2 weeks of flashbacks!

In military terms, that's a minor case of PTSD. But it sure made life hell for me for months, years even, so don't diminish your PTSD, however trivial you might think it is. Your brain, inside where you can't access, believes it to be a bad case, so humour it, let it think that, and get it treated as such.

I got a shock one night when my partner told me that I never say anything good at bedtime. I'm always complaining about this hurting or that not working, or some other physical symptom that I have. It seems that I do, so I have had to work hard at changing that.

(Unfortunately this old body of 64 seems to have so many issues that there's a non-stop litany of aches and pains, rarely in the same place twice in a month...and since this has been the only time of day that he'll give me his undivided attention, that's when I tell him about it. Ooops, my bad. I now try to talk about aches and pains during the day instead, and talk about normal daily stuff at bedtime. Not sure whether I have succeeded or not.)

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Hi,

FND is real, you are not imagining your symptoms and they are not in your head!

The problem is in your brain, which is sending out and receiving faulty information.

It is a bit like a computer with a virus,

So there are lots of different symptoms and their intensities can change or even the symptoms themselves can change over time.

All down to our faulty brains, so read about FND, ask questions and try to understand and accept the diagnosis.

It has taken me over 18 months to fully accept, so be kind to yourself, do not feel guilty it is not your fault and pace your life as much as you can as I have found this works best.

Best Wishes

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Thank you for responding. I should feel some sort of joy or relieve knowing that my condition is real, but, I am having a hard time dealing with it. I have been out of work for 5 months. I know i will be fired or let go because I can no longer do the things I use to do. I try to stay positive but my mind doesn't not stop.

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Hello mate, hope you're not in too much of a dark place and you're definitely not crazy. Without wanting to sound solid I take it you're a US Veteran looking at the flag? Be proud of what you are and respect to you and all our brothers and sisters. I had a spell in the UK military (never actively deployed) before going into law enforcement. I suffered a head bang in a car crash a few years ago which triggered trauma related PTSD. The way my medical people are looking at it is that mind and body are one in the same instead of two separate entities. I find that quite refreshing to be honest and a positive way forward because I now know that I'm not mad after my mood swings and anger. One neurologist described it as an overload in the brain that upsets its balance and subsequently the brain to body function. He asked if I recalled footage of WW1 veterans who shook and twitched uncontrollably (shell shock). I had and that was his way of further explaining what's going on. Another explanation is likening it to a computer malfunction, the wires are all good but a software problem creates the issues. My functional symptoms are being linked to my PTSD and am being treated for both. I'm on medication for the PTSD, having psychiatry for the PTSD which includes Cognitive Behavioural Therapy and and Eye Movement Desensitisation and Reprocessing therapy, neuro physiotherapy to help with my mobility and some speech therapy and I'm waiting on treatment from a neuro psychologist. Every type of treatment you need needs to be neuro related. I'm trying hard not to keep overthinking and accept to some degree what's going on and working with the professionals to get myself better. I won't be able to do what I used to but I can and will get better than I am now. This is just me and my story, everyone else is different and has different stories. Keep smiling and message back if you need/want to.

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You are correct that I use to be in the US Army. My dad was in the Air Force and we lived in Braintree-Wheathersfield AFB from 1980-83. I still miss the fresh cream on top of the milk bottles we got every morning.

I am going through therapy, not sure which one, with a Psyc. I have my goods days and bad but overall I think she is helping me. I don't understand who I am and the world around me, but I guess that comes with the territory.

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Do you really need to understand who you are, or the world around you, in order that you can actually enjoy living in the present, in this crazy world?

No. You don't need to understand all that crap. That's all extraneous in your new world. Shut it out for a while. You don't need it today for you to have or make a happy memory for today.

Get up, make one happy memory for today. Beach? Bush? Nature? Play a board game with a family member or friend? Get something out from the cupboard that you haven't touched for 5 or 10 years...and do something with it. Something crazy, that will make you laugh!

I was very surprised when young 10 year old grandson pulled out a box of fiddlesticks last week. He and I enjoyed several games together. We ignored some of the tiniest shakes...hey, he's young and still learning, I get shaky sometimes. We had fun! Unexpected and serendipitous!

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Hey, I'm sorry you are feeling the way you are. That said I can relate to feeling confused, frustrated etc.... . I too was just diagnosed with FND after a 3 year journey. For a whole 5 mins I felt the weight of the world lifted off my shoulders. I thought wow finally a doctor who knows and understands. Not one who is scratching his/her head or telling me that I have a mood disorder. But my joy turned to sadness when he told me the realities that getting back to my old self or going back to work were highly unlikely and not something I should think about or dwell on. Honestly this is still something I'm working on getting my head around. I'm 48 and all this started after I feel at work in a slippery parking lot.

Anyway with that said what I want to say is..... A - I can tell you that you are not bat shit or any other type of crazy. Yes it is in your head but it's because your brain has been compromised and is not working as it should. B - the best piece of advice I have been given is too think in terms of small victories as a way to become the best "new you" you can be. I have started this by concentrating on becoming safe in my home.

Now this is not and will not be easy but life isn't easy. I still think about life before which I think is natural. The goal is to have these thoughts not consume my day but to fuel my day, fuel my recovery whatever that might be.

I hope this helps. Well I hope it made sense first - lol!

I only recently found this site and reading the posts made me feel like I'm not alone even though we are all strangers we are brothers and sisters as well.

So from your Canadian neighbour good luck and don't stop battling to get to a happy place.

All the best

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