living with fnd

[michelesmith]

Living moment to moment with FND, is very challenging almost a life now of surprises. I do what I can , but sleeping is my rescue. My brain is foggy and it takes alot of energy to focus, think, comprehend, read, listen to music , etc. I really wonder who I am now.

[Zozo87]

Michelesmith,

I can relate to your situation, I felt foggy 99% of each day for the first 6-10months. My Dr kept telling me to not just rest my body but also my brain, I felt so alone and desperate in the midst of that but I found simple pleasurable things that were easy on my mind to occupy me. I hope you are finding joy in something small each day.

I do find music overwhelming quite often, the music I enjoy now is softer and calmer. Focusing on something might last 15-20mins or up to an hour before I begin to have symptoms, I have improved though its slow. I often have those thoughts of who am I now? I imagine I’ll find a new way to be, contribute, participate in life.

My current dilemma is the more I do the worse I feel and trying to find a comfortable amount to do and live happily without discomfort is difficult or boring.

Can I ask how many useable hours you have each day?

My Dr had me taking B12 and folic acid I did feel the fog lift taking these, something to ask your Dr.

[nurseny in reply to Zozo87]

did you do blood work and was your B12 and folic acid low because i asked my doctor to do blood work to see i was lacking but i wasnt bc if it helps than i will also be taking that bc as of now im only on trazodone for sleep at night

[Brokendeer]

Hi as a long term Motor FND sufferer I can understand the symptoms and frustration.

However, getting into a well paced routine will help your brain cope better, it will understand when concentration is expected. Having done the FND Rehab UK they said think of the body as getting fatigued in 3 ways, Physical = activity of body and limbs etc, Mental = concentrating and thinking about tasks, Emotional = stress, anger, worry and family/friends interaction.

I found if you can space these kind of events a little apart during the day or if major issues, between days themselves it helps.

Many famous writers for example, quote the fact that they write at a set time on a set day to train their brains to be the most inspiration at that particular time - it does help to have a routine.

Also for me, I cannot watch TV or listen to stuff (even a phone call) early in the morning because it places my brain into 'foggy' mode. So find out if certain times are worse triggers for you and then work around them.

Aim for medium amount of activity in one of the 3 types of fatigue areas each day, not all at once!

Note: too much sleep, too much TV will automatically put you into sleep 'foggy' brain mode and with me as well, to much people interaction and stormy low pressure weather are terrible triggers.

Look for the calm in the Storm!

[Goodliving]

Hello,

Maybe I can add something to this conversation based on my experience with sound.

Sound and frequencies more specifically would instantly shift my brain into a dissociative state. So what happened? My brain began to of course anticipate that when I heard certain sounds that caused a shift then it then would automatically expect the shift to happen. Well, from what I know and learned, habits can keep us from making the changes that we need to live a better life. So it made sense to me to EXPOSE myself to things like loud human/machine driven noses slowly and deliberately that caused the shift and after not to long my mind responded differently to the sounds. I think this refers to avoidance theory. So for me avoiding reinforced bad habits and my brain learned that in really sound is really not a threat. Might make my ears ring, but that is not a threat either. Just a symptom of FND.

Hope this might add some insight to for you and be helpful.

Cheers!

Pat

[michelesmith in reply to Goodliving]

omg thank you so much!

[Goodliving in reply to michelesmith]

You are very welcome. P

[Orge]

I'm the same luv sleeping is a relief, you can only do so much b4 ur busted. A wee nap dosent hurt no one, it heals the body and mind till reality kicks in and you have the same shit every day😔😁stay positive

[Lady4]

I read a story not so long ago about a girl who was sensitive to every small thing and she was put through a real intense training session, swimming etc and her reactions, naturally were quite extreme and at times unbearable but it was inspiring and in time her sensitivity levels dropped. I must point out that it was done under professional guidance and coaching, over 6 weeks or so.

So I don't think avoidance is key (trying to sleep more), try to deal with things head on when you feel emotionally stronger, brain retraining techniques may help but tiny reinforced steps.

As the "fight" and "flight" neurons are closely linked to the sensitivity neurons.