Feeling hopeless

[Cazz191275]

Hi everyone iv had FND for 2 years my life has changed and feeling hopeless I was told it was a Functional stroke my left side of body is a mess along with the left side of my face I went from running 7 miles every morning 2 turning in 2 someone I don't recognise or even know iv caress come in twice a day 2 wash and do my breakfast then at night for bed feeling so low just lookin abit of hope and support and does anyone find how horrible other doctors and medical staff treat you

[malalatete]

I collapsed at work 8 years ago and went home with what I thought was a wierd migraine from which I didn't seem to recover, and spent the next 3 years with problems of vertigo and dizziness, a robotic gait and only neing able to walk 19 steps a minute, extreme fatigue meaning that walking more than about 50 steps was often inpossible anyway. I was diagnosed with ME/CFS and FND.

Fast forward to now and at the moment my fatigue and leg issues are on and off - but mostly off, so much so that I have for the last 18 months been studying with a view to getting back to some degree of 'normal' function in the world.

I am not free of the condition or symptoms and I still have these 'flares' - am suffering with one at the moment -but I do have increasingly longer spells of better days where, as long as I am sensible about what I take on and make sure I have time for rest and recuperation, people would be none the wiser.

So there is hope that it can get better.

How I got here is a bit of a mystery. There was a lot of physio which didn't really help any. There were various meds, none of which helped because of the side effects. I had 3 years of psychotherapy which did help me to accept the sudden losses I had suffered - of very well paid job, career, house, all future plans. Things did seem easier once I had accpeted that the old 'me' was gone forever.

They did discover about 3 years ago when reviewing my brain scans that I have a brain aneurysm and needing to go in for brain surgery put the condition in a different perspective, I guess. I was determined to be as well as I could, fearing the backlash from the condition. I pulled back from everything I did for about 6 months, spent life resting, and went in and out of surgery with no ME or FND issues. Since then I have been mostly symptom free apart from these 'flares' which last from a couple of days to a couple of weeks but so far (hoping and praying here) have always gone eventually. After two 3 year blocks of solid disability with only a brief sudden respite (again quite a mystery as to why that time too) I am hping that my brain has rewired itself fairly sustainably and that the flares are only occasional instances of short-circuiting.

But I am proof that things can improve, albeit not 100%, not back to 'normal' and not back to a totally predictable state of wellness. But definitely much improved. And as it turned out my aneurysm was untreatable anyway, these days I just wake up glad to see another day and praying it won't be my last!

I hope that gives you a glimmer of hope and that you are able to find your physical/emotional/spiritual balancing point where the FND becomes less of an issue in your life too...

[Cazz191275]

How amazing it is just 2 know there could be light at the end of all this it's def just not me that suffers my 2 beautiful sons have lost a lot as well let's hope 2 morrow will be a brighter day and glad 2 know there is hope god bless you Malalatete

[cathys20]

Good Morning from the States, Just a bit of background first, I live in WI where we are enjoying our Winter. Recently went through a 2 week period of almost 10-20 below for an average. I say this because I do not live in a climate that likes our illness.

I will also say I do not have a diagnosis of FND. But as I have said on here 100 times I have what everyone else on this board has. I had a diagnosis in the very beginning for 2-3 years of conversion disorder. Which is the reason I tell people most of those who are diagnosed with the such should dig much deeper.

In 1998 I had a brain surgery for vestibular disease, they severed my vestibular nerve at that time. ( hindsight now tells me it was a very poor choice, by a list of Dr.s who recommended this). I came out of that surgery with a terrible spinal fluid leak, remained in the hospital an extended week, in which I almost died. After one week I was returned to surgery to repair the leak.

One night after returning home the symptoms began in the evening out of nowhere. I was rushed to the hospital, the ambulance and family thinking I had had a stroke. I did not. But such began the nightmare of what is called for most of you FND. I remained mostly unable to speak, or walk for the next several years. I had as many as 15-20 attacks everyday, where my body would become rigid with spasms or the inability to move anything at all.

Prior to this they I ran from morning to night without much of a break. I had my own thriving cleaning business, homeschooled the last of my two children. All changed in the blink of an eye.

I began to learn sign language and function the best I could. My husband was a strong advocate and would search relentlessly for what was wrong with me. He never bought the conversion disorder, even though I did not, I thought somehow my brain had broke and I did not know why. I would eventually be diagnosed with paroxysmal dystonia and spasmodic dysphonia. What I believe I have is an undiagnosed functional neurologic disorder, which I believe most on this board have. For whatever reason our brain misfires.

Fast forward to present, I have been diagnosed this past two years with POTS< Sjogrens disease, Perpheral nervous system disorder, autonomic dysfunction. I;m a bit of a mess, but a happy one.

I think something happened to my brain as a result of the surgery and leak. I have never been the same, it has affected all of my neurologic function. I take one day at a time, thankful to be alive, knowing tomorrow could put me back in the chair, or be a day that I can enjoy life to the fullest. I am never what society calls "normal". I am extremely limited.

Somedays I sleep for 30 plus hours in a row. My left leg does not function properly, I have been diagnosed in that leg with small sural neuropathy. My digestive system does not function well, food does not travel into my stomach and much comes back up. I have achalasia. My pain from the Sjogrens is almost unbearable at times in my limbs. All this said the life I once knew is gone. But the life I have now I make the most out of it, because it is who I am. God would not have allowed me to travel this road if he had not thought I could handle it, so handle it I do. I have spent 13 days in the hospital in the last 8 weeks alone. But I persevere. There is hope, but sometimes that hope comes from accepting where we are, knowing tomorrow is another day whatever it may bring, each day is as they say an assorted box of chocolates, never knowing what may it may hold. God bless, Cathy

[Cazz191275 in reply to cathys20]

God bless Cathy very much needed words of wisdom ♥️

[Fndsucks]

This condition seems to be controlling my life currently, I was in the same boat you fitness wise & now barely leave the house. I can’t take my toddler to nurser as I can’t get up & down the stairs to drop off. I agree with a lot people in the way that it seems to have a grip in a way that isn’t manageable & people don’t understand to having days/months where it’s bubbling in the back ground. I’ve had 9 months free of anything & that was pregnancy but it it started to take a grip again. It’s currently having a negative affect on my family to the point where I can’t keep up. I’m supposed to go to a theme park for a birthday present & honestly I’m struggling to my head around to it.

I hope that you find a reprieve soon & get the help & support you deserve. There must be something that could really help us all one day.

Take care x