Fnd first year of diagnosis

[ZoeGlastonbury]

I'm within the first year of my diagnosis of FND. I wake up everyday trying to remember who I was before this illness took over me. I feel I'm developing a problem with feeling like I'm not me anymore and not knowing who I am. I was an athlete and expressed myself with pysical ability and now at times I can barely move and no idea how to cope with the huge change to who I was and what I can or cant do.

[Brokendeer]

Hi I am a long term Motor FND sufferer, which translates as mainly lack of movement coordination so I can sympathise with your dilemma on that side of things.

Through trial and error and FND Rehab UK, I found out my triggers that make things worse, this is a vital step, you can then adapt and alter things in your life to reduce these bad times, either in frequency or duration.

Now what you hear constantly about is the "Flight or Fight" reaction in the public and medical world and it has somewhat been linked with FND sufferers.

What they do not focus on and I think is my main FND issue, is the full title of this survival reflex "Fight, Freeze or Flight". Because the Freeze part is a different way the brain handles Adrenaline i.e if your brain gets feedback from your body that it cannot FIGHT (attack and ward off the threat) or FLIGHT (run away from the threat) it will naturally and subconsciously go into FREEZE (shutdown all systems until a strategy can surface to evade the threat).

Obviously with your training as an athlete, you have finely tuned and honed your Adrenaline to work for you, not against you. When FND struck, your brain and body had 'readiness' status messages lost in translation and without a clear Fight or Flight is selecting a Freeze mode to come into play.

This is why pacing and self-management are driven home in FND Rehab, trying to space out the 3 fatigue stressors of Physical, Mental and Emotional activity can help the 'overloading' signals calm down and let the brain prioritise action better (hopefully avoiding the survival mode).

They recommended striving for a medium level of activity each day, whether it is a Good or Bad day, then the brain can regulate signals more freely as conscious routine or habit, not allow subconscious instinctive survival mode to kick in. Hope that makes some sense?

My advice, do not panic! Try and let your natural automatic spinal systems to the hardwork and not engage your brain much for movement i.e walking on the flat is automatic and walking on a slope requires brain intervention. Basically every time fine tuning and quick regulation of balance adjustments are required.

Fact: Humans genetically are required to coordinate over 200 body muscles in order to take one single step forward!

The body is a great evolution machine, if you cannot do something at that precise moment, it does not mean you can never achieve your goal some other way or at some other time - it takes lots of self-reassurance and practise but ultimately it helps to accept and laugh, not cry at disasters. Others around you will also prefer that strategy!

Look for the calm in the Storm!

[Goodliving]

Hello,

From my perspective only.

Maybe if there is one thing I can add as a reply to your story is that there is a lot you can do to be pro active and make the disorder less impactful on your life if you choose to.

Sometime you will find that your friends, family and healthcare professionals give you great ideas, but also be creative and think of what works for you. For me doing as many things that bring me joy and relaxation is important. Also anything that keeps me firmly in the present for a period of time. This trains my brain to stay well connected to my environment which is key to the opposite of what the brain wants to do sometimes "dissociate". Example I am a long distance open water swimmer ocean and high elevation lakes so being around water and out doors is where I experience joy. I pick up trash on the beach so that involves walking, focusing on looking for trash and the plastic can hide at times , and pleasant sensory experiences such as sounds of the waves.

Finally, I might add , the doctors feel that if I can retrain my brain and create new neuro pathways, then there is a very good chance that I can make a substantial recovery, but it does take work and I am willing to do that if it brings more joy into my life and others as well.

Cheers!

Pat

[LouBL0u]

Hi Zoe

I noted Glastonbury in your name and have experience of going to the Rosa Burden Centre in Bristol ( ask your GP to refer you) I attended a three week in patient FND multi-agency rehab programme. This really helped me to understand and develop strategies for symptoms.

I also spent a lot of time watching UTube links on brain plasticity and FND when first diagnosed. I also had regular Accupuncture

You will rediscover yourself, maybe not as remembered but it’s a new path.

Good luck

[BeeYou22 in reply to LouBL0u]

I've been referred to the Rosa Burden Centre by my Neuro Rehab Consultant at Musgrove Hospital and am waiting to see if they will admit me. I have a lot of medical problems including ABI and TBI and have just had a fourth brain MRI scan so I'm waiting to see what they come up with. I live near Glastonbury!

[LouBL0u in reply to BeeYou22]

Hi again!

I’d press for the opportunity as although challenging it really helped me!

My FND was diagnosed after a TBI ( I was initially diagnosed with post concussion syndrome, then FND with complex PTSD)I’m also a cancer survivor.. accepting the FND diagnosis was hard ( I blamed it all on the TBI at first) but this needed to happen in order to access support. I took the view, the more I could learn and increase my skills, the better!

Good luck

[angel-7]

Dearest Zoe,"how to cope with the huge change to who I was and what I can or cant do." To me this is also about mental, emotional and spiritual life. Previously I was very fortunate to look deeply into these areas of my life with the help and guidance of a gifted and honourable psychotherapist. Perhaps you can find someone(s) to help you, understandably, because life has changed so significantly. Not necessarily a psychotherapist but what might feel right for you. Every person with FND is so different in their experience/how they are affected. I send you love.