FND pre existing condition?

[Sugartime]

Morning, has anyone ever been told this debilitating illness is a pre existing condition.Frustrated by the medical profession as they have no idea of the cause and attribute it to trauma or stress. All comments welcomed. Thanks

[Numma100]

I have heard some speak of it as well as being told it's from a previous life event or stress. I was personally fortunate to have found a path that took about ~2yrs & ended up seeing a FND certified specialist (which I did not know of what this was or what she was). My best advice is to continue seeing new doctor's I know it can be stressful but it's certainly is no "real cause", check FND Hope find someone near you

[poppymom23]

FND is frequently caused by previous trauma, sometimes even childhood trauma, causing your brain to create these alternatives pathways that create havoc on our bodies. Stress can make this condition worse, but that is true with most chronic conditions. If you have ever had trauma in your life, try to find a therapist experienced in treating FND. I don't know if it will help or not but the correlation has been well documented. Just make sure the therapist knows about FND. I have discovered it is helping me much more to have PT/OT and a therapist with FND experience than it is to have a doctor with FND experience.

[Hidden]

Hi there, Yes I was told that my FND and NEAD was due to stress and trauma. I was told to see someone but no help there so far. I am still looking. As far as my life is concerned there has been much trauma in it, but don't understand why I have only been diagnosed within the last few years - specifically FND (by name) since september.

[cgarff in reply to Hidden]

Hello MissBently,Imagine this with your trauma... as a child, you may have seen characters stuffing a closet soooo full of stuff, that the door is just bulging. Then one more thing is squeezed in the door (stress per say) and that door can no longer hold any longer and everything comes falling out at once creating a huge mess (FND). All those traumatic issues, and stressor, not dealing with those problems properly, having too many traumas, just can hit that point where your system can't deal with it any longer and it all explodes.

Having a good therapist is VERY helpful. If you don't find a good one that fits for you, don't stay, find another one. You dont want that person to create more issues for you than you already have! OT, PT are good as well if you need it, as well as a good neurologist! I started having issues back in Dec 2008, I have been to my own hell and back, and after this long, with amazing help, I AM seeing the light in my tunnel. I am doing pretty well finally, have been able to go back to work in the last 4 1/2 months after being out of work for 6 years.

I wish you the best, don't settle! Keep your chin up and smile, laugh at FND and tell it where to go! Don't let the tears take over, YOU CAN DO THIS!

[Hidden in reply to cgarff]

Thanks, cgarff, for your help and advice. I received a phone call the other day from an OT who said I wasn't on the critical list and as it was lockdown, I would be on the waiting list to get help re my shower. Other than that..... You know something? I want to sing and dance in my heart and say stuff the lot of them, but I know I can't.

[Hidden in reply to Hidden]

Guess I'm having a bad day emotionally, sorry - not usual for me.

[Paddoodlz]

I understand your frustration. I recently got a referral to a neurophysichiatrist from a family friend. That is who you need to see. They know what this is - they listen to you, they see you as a person and they beieve. I was told that this illness is an organic ilnnes as it structurally affects the areas of the brain that are responsible for all function. It is not psychological. I am in Ontario Canada. If you are in my area I would be happy to give you the contact info. He referrs people to our group here all the time! He runs and FND Clinic and is trying to educate all health care providers.

[Van604 in reply to Paddoodlz]

Hi. Can you give me his name? I'm from Canada too. Thanks

[Paddoodlz in reply to Van604]

He runs the fnd clinic at Sunnybrook hospital and is a Neuropshysichiatrist. Dr Matthew Burke. He and his team are wonderful!

[Van604 in reply to Paddoodlz]

Thanks!

[Hidden in reply to Paddoodlz]

Sorry, but thanks, I live in Scotland 😁

[Brokendeer]

Hi I have gone through all the UK Hospital Rehab program for FND and they do not know the actual cause (just as with Multiple Sclerosis or Parkinson's and many more Neuro Conditions to date).

Though for my FND they do say at some point in my life there was a physical incident that meant my brain did not recover from it's compensatory actions back to normality, so ended up with physical brain dysfunction issues.

Yes, there are structural changes in the brain with FND, and although not proved as Genetic, the medical profession think that you can be pre-disposed to this condition, I guess just like some people are more likely to have a Stroke than others?

So basically whether you have major trauma,/stress or no major trauma/stress incidents in your life - the brain has changed due to a physical event i.e injury, surgery, hormonal, major disease, severe illness, circulation issues, environmental impact/electrocution, severe fight or flight situation.

I was told re-training the brain was the only option available via NHS to improve/cure FND. All well and good, but when not all the brain circuits are in your conscious control you can see why us FND Sufferers have long term and very, very diverse symptoms!

Find what triggers your problems to be worse and try to reduce them by adapting your lifestyle, manage them best you can mentally and always rely on your own pace not others.

Be kind to yourself, look for the calm in the Storm

[Sugartime in reply to Brokendeer]

Thank you appreciate your comments

[Paddoodlz in reply to Brokendeer]

Well said

[Hidden in reply to Brokendeer]

That’s so helpful . Thank you 🙏🏻