A journey of 1000 miles begins with a single step. Isn't that how that saying goes? That is a simple and profound statement for most, but for me, 5 years into this journey, that is bullshit. 1 mile in my shoes is bad enough.
My resolve is beginning to crumble as I face a new specialist next week. I'm over hoping that they diagnose this, and just looking for a doctor who doesn't tell me it is in my head or just part of my FND.
FOR THE LOVE OF ALL THAT IS HOLY HEAR ME... I have FND. Please ignore it.
Starting with a leg drop event 5 years ago, I have something going on that is causing extreme nerve pain, rigidity, and movements, unlike anything I've ever experienced. SOMETHING IS IRRITATING MY FND. I am not here for my FND, not here to discuss how to treat my FND, and am not here to talk about how to cope with FND better. I am not here because I don't believe I have FND, I'm not here because I need you to confirm that I have FND, and I'm not here to have my FND treated in any way. I'm here to find out what is irritating my FND, and deal with that thing.
Can I get this on a business card? Whatever this is impacts my speech on bad days and I don't have any choice for communication options but to brain someone with a chair when I can't form words.
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Gud4Ewe
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As they also say there isn't a pill for every ill and the lack of resources and awareness isnt pushing research in our direction. Maybe that isn't true, people are starting to pay attention, it is a slow process and hopefully we can start the ball rolling for those coming behind us.
It's OK to let the steam off, holding it in does more damage. If you can focus all that in a way that makes you feel good (not an easy thing) would add a bit of positivity.
We all have different triggers and some people seem to react without any obvious cause. Personally if I try too hard I pay for it for sure.
You have probably seen this before on Youtube about a Ballet Dancer with FND. Worth a watch.
Take Care and try not to let them push your buttons.
My husband had a similar problem - he has multiple arthritises - the rhumatologist was ignoring his complaints of pain until I hit on the magic phrase that worked - this was 'new pain'. From this she suddenly understood all the complaints of pain were about something new - he got a scan of his spine (eventually after being told off for having a seizure in the scanner {grrrrr} ) to find a named nerve was under pressure and were not only causing a major 'new pain' but other symptoms due to what that nerve is linked to.
It is important to get across the fact that this is different and new - can they be sure it isn't something unrelated? Or can they find out what the new trigger is (after all some of them will need medical investigations to pin down)?
Your post sounds a lot like myself as does the picture. I have come to accept that FND is what I have but my symptoms get worse, then better and I can't seem to manage it at times. Every time they get worse I question anything that I might have done to make my symptoms worse. Was it the weather? Was it my diet? Is there something causing me stress? While I have found that any kind of stress makes it worse, even a little worry, stress is only a contributor. The more stress, the higher my pain level. I lost 93 lbs, changing my diet, thinking I could cure myself. In the end, I can't seem to control any of it, other than try to lead a stress free life. It's hard to relax when your pain is through the roof. Every day my pain is like that picture, sharp, piercing with electric shocks in between my toes, on the bottom of my foot, up my leg and on my ribs. I God bless us all!
I didn't reply more yesterday because I didn't have the energy. To answer you more directly, I have Dystonia. Heavily right side but it impacts both sides. Lower legs and arms most commonly but it does get up into my neck and face as well - thought heavily on the left side of my face. It is part of my FND, and I can control my dystonia with meditation and mindfulness. I currently consider my dystonia to be under control. What is going on now can best be described as general swelling and rigidity. Things just stop being soft. My whole leg will just become stiff. The sensation even gets up into my teeth and mouth, making me stutter, and locking my tongue to the roof of my mouth so hard that I break blood vessels in the tip of my tongue from the pressure. I have fractured 3 teeth in the past 2 years. I get tazer like electric shocks that occur in my gut and spine and force hard myoclonic jerking. I've thrown myself off balance and into walls and other objects, hurting myself. It makes me randomly lose control of my motor skills and I will have it one second and I threw it over there, the next. I don't wash the glass dishes anymore in my house after I broke one and cut myself to the bone when I lost control of my hands. I have random sensation loss and changes in my limbs, again, heavily right side, with excessive nerve pain. My leg muscles periodically fire out of control throughout the day, off an on. I will have whole episodes where my legs look like the hide of a horse shaking off flies with all the movement. My muscles are beyond tired, and some of the pain is literally exhaustion of these muscles. They cramp up all the time, just because they are so overworked. The only thing I am taking for this that helps at all is a 1:1 CBD/THC tincture - 600MG, 3 times a day during working hours as needed. I've been through a lot of products and this one is actually giving me more control through my day. No doctor will give me anything for any of this because they are afraid to give me any sort of diagnosis. The last medication they did try made things worse instantly, so all meds were stopped and nobody will even try anymore. I've spent the last 4 months in a complete spiral, with only myself to pull me out of this. No doctors will help and all of them are pointing me to the new movement clinic just to get me out of their lobby at this point. People always say, never self-diagnose. Well, what freaking choice do we have?! If nobody else is going to venture a guess, This mess started in 2015. I'll start throwing out ideas...
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I'm lonely and scared
I have been told by a Neurologist I have NES, I believe I have FND, Help!
Is it fnd or am I going mad
Hoping to find support
