At last!

[Nic1972]

It is AMAZING to find that I am not alone with this FND! Spent months or more feeling that Im crazy and that I have no control over my body ... turns out I havent but at least Im not crazy

[VivienneWaterworth]

You're not crazy...you just have a crazy software problem with your otherwise quite normal brain. You are definitely not alone. Check out fndhope.org and join one of Facebook groups listed there. The big one is good for finding out more info about FND and finding people in your area of the world who also have a similar story to yours. That really helps as you adjust to living with this crazy disorder

[cathys20]

No you are definitely not alone. And you are definitely not crazy. Please read some of the other posts, ask any questions you may have, and stay strong, You are your best advocate in this disorder. God Bless, Cathy

[Nic1972 in reply to cathys20]

Thanks Cathy20, any tips to deal with this mentally, not physically?

I DO feel quite helpless with this-not something Im used to!

[cathys20 in reply to Nic1972]

It takes a while to get use to this whole thing, there is a part of this that steals our independence, hard to venture out on our own in case there is a flare up, so the you you use to be may be gone, but this new you has opportunities to be a just as good or better than your old self. In the beginning its like you just keep thinking you want your life back, but truth is I think the old life is gone and adjusting to this new one takes some time. My faith and family keep me going even on the really tough days, without those two things this could at times be overwhelming to the strongest person. I do not know all that you have, I have dystonia as well as possible fnd type symptoms. I believe we all have an unidentified movement disorder. I would love to talk privately with you, please take the time if you can to read a few of my other posts, it gives you a little insight as to where I have been and where I am now. Others have heard my story so don't want to be too repeditive. I have had this since 1998, Was very very sick the first two years until meds were started.

Do you live in the states?? If so we could talk on the phone, I can call you or you me. Let me know. Praying for all on this board, this is a tough thing, each of us has different and varying degrees. But its all the same thing, and still so very little really known about it. God Bless, Cathy

[angelite]

Hi Nic,

Glad you found us. May I ask for some background about how you came to be diagnosed as this ?

Angela x

[Dave_1]

Are there any of us that don't doubt our sanity when our condition is so misunderstood.

You are most definitely NOT alone.

Good luck.

[Tewa]

I felt the same way when my doc gave me this diagnosis. Hard to handle this after such a longtime of not knowing and add to that the dismissive and sometimes disrespectful attitude of some docs.

I feel supported and also not alone since connecting to others on this site. Also good to give support and suggestions to others.