I was diagnosed in January after several doctors visits. I had to go to A&E several times to be heard until eventually one took me in (after even paying high fees to specialised doctors). I just want to say don’t give up if you feel like you’re not being listened too! It began when I got electrocuted when I was 19.
My main symptom is focal Dystonia in my hands, cramping in hands, legs & feet, tremors in arms & legs. These aren’t constant but I have bad flare ups and these flare ups could last for months. I am still learning so much & loads of things are making sense thanks to this page such as exercise making my tremors flare, fatigue, memory loss, bowel problems as well as pins&needles.
Does anyone believe endometriosis can be linked to this? I know heavy periods can be a symptom.
I am a very positive person & don’t let this diagnosis define me & I hope that some of you feel the same, keep happy!
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Irishgal1998
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From what I have read, just about any physical injury or illness can trigger fnd. Mine happened after three months of chronic vertigo, as they tell me. I did read one report where they tried to link cases back to any gynecological disorder. So I feel that one may just may be a way for them shifting everything to the whole hysteria issue.
Unfortunately Fnd is a black hole diagnosis. If the Dr doesn't know ? Throw it on the pile. If it's confusing, throw it in the pile.
Listen to your body. Live happily and don't let anything hold you back.
Hi I can identify with you, my problems started following acute viral meningitis. I had terribly heavy periods and they gave me the marina coil to help. The result was incredible no periods whatsoever from day one!
I like be your saying by the way. I always say it’s changed me but will never define me.
Hi I think for all us FND sufferers, it is understanding and modifying our lives around our symptoms that is the hardest part, because FND can be so different from one person to the next, you do start to believe it is just `You' and no one else affected by the same condition.
The only common factor is that the Nervous System (as a whole) has been traumatized at some point and caused Brain information / sensory overload and confusion. Which we sufferers cannot correct fully as self-perpetuating i.e the Nervous System signals are not consistent enough for the Brain to turn off the `Flight, Freeze or Fight' mode completely.
Unfortunately even a false danger means a real survival reaction, this over reaction causes all sorts of bodily processes to be upset, yes especially emotional or hormone related ones!
Pacing your everyday tasks is a good way forward, I tend to split them into either Mental, Physical or Bit of Both tasks and toggle between them as my body allows.
In my mind, it is all about balancing Adrenaline, the main trigger for `Flight, Freeze or Fight' and my Motor FND. Keeping the Adrenaline levels fairly stable, with no big emotional swings, few Boom-Bust tasks to cause crippling fatigue, does help achieve more - least long term!
If you have not already, why not check out Professor Jon Stones Website neurosymptoms.org/
It has hints, tips and an insight as to how common and random symptoms can be?
You nailed it on the head. I am really starting to hate the term "pacing" but that's what we have to do. LOL I used to be an all or nothing person. Such a complete turnaround.
I have had FND for 5 years now. Started at age 33 after two emergency eye surgeries. It was so bad at one point I could barely walk or stand. All limbs would turn to lead or spasm and my eyes daily are blurry, double vision & painful to scan or focus.
Basically all the important stuff affected.
I have gotten my walking back as long as I physically, mentally & emotionally dont over do it. The MORE CLINIC in Louisville gets the credit for that. They were great.
Anyway, I wanna ask if any of you think using my limited abilities on writing children picture books.is a good idea. I know your strangers but I fell conflicted on putting so much effort into a dream of mine versus always searching for a cure like writing down my feelings in a journal or practicing tai chi.
I can't focus on both due to the toll it takes on me all the way around.
You should do what you always dreamed of! Don’t let this condition stop you from doing what you’ve always wanted to do. You know yourself when you are doing these books how much you can write/draw each day, if it takes you months or years you should do it.
Hi yes, I am going to use that dreaded `Pacing' word again. You can achieve anything you put your mind too, FND sufferers are very clever complex brained individuals who just have to think things through in a little different way is all?
There is no doubt, you will have to sacrifice some tasks/activities to fit in your book work, but that is okay. It won't be forever! And if any family or friends offer help to cover some tasks while you are busy living the dream - don't turn them down, during this project is not the time to be defiantly independent and try to manage everything alone!
I have a disabled artist friend, and she says so long as there is no deadline, she is happy to do, what she can- when she can, till enough artwork is ready to take to a Gallery or Art Centre to exhibit them.
Be prepared, before approaching publishers is my advice!
Also be kind to yourself, search for the calm in the storm!
Hi yes, I am going to use that dreaded `Pacing' word again. You can achieve anything you put your mind too, FND sufferers are very clever complex brained individuals who just have to think things through in a little different way is all?
There is no doubt, you will have to sacrifice some tasks/activities to fit in your book work, but that is okay. It won't be forever! And if any family or friends offer help to cover some tasks while you are busy living the dream - don't turn them down, during this project is not the time to be defiantly independent and try to manage everything alone!
I have a disabled artist friend, and she says so long as there is no deadline, she is happy to do, what she can- when she can, till enough artwork is ready to take to a Gallery or Art Centre to exhibit them.
Be prepared, before approaching publishers is my advice!
Also be kind to yourself, search for the calm in the storm!
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