Functional neurological disorder

Hi everyone, I posted recently about my personal battle with fnd, like many of you I find the lack of support and understanding out there from gp's and other health professionals really hurtful and unhelpful. I was wondering if anyone knows of any other support groups for people with fnd besides Facebook, (I don't do facebook). I am finding this a very lonely illness sometimes especially when no one understands. It would be nice to talk to others who understand me.

Best wishes to everyone x

10 Replies

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  • hi I only joined Facebook to connect with fnd group, it really is helpful. other then that I'm not aware of further groups. I totally agree that professionals,friends and family do find it difficult to understand or how to help. I have asked the group if there are any posters that can be displayed in gp surgery's etc. good luck xx

  • What a great idea about the posters hopefully one day such information for others will be available. Best wishes to you x

  • Good Morning, I too do not do facebook. I was also in the fnd group on facebook and found it was a going back from fnd to conversion disorder, and felt I didn't belong there. I like this board but so understand that it would be nice to talk to someone face to face. Please feel free to contact me through e-mail. I don't know if you are in the states or not but if you are perhaps we could talk. We all need each other, and this disorder can be a very lonely one. Hope to talk with you soon, God Bless, Cathy

    grandmas16@gmail.com

  • Thank you for replying, I live in the UK but would love to chat via email. My email address is louise79.laj@gmail.com

    it's good to find others who understand x

  • HI,

    AS FAR AS I AM AWARE THERE ARE NO OTHER GROUPS OR WEBSITES OUT THERE FOR US. BUT DONT GIVE UP. READING AND REPLYING TO THIS ONE WILL HELP YOU A LOT,I AM NEW SOMEWHAT TO THIS TOO. I WAS DIAGNOSED A WHILE AGO AND HAVE HAD TIME FOR IT TO SINK IN. IT MAY BE OF GREAT HELP TO YOU IF YOU START FACEBOOK, I DONT KNOW WHAT THE HELL I AM DOING EITHER BUT IT HELPS ME. YOU CAN LOOK AT MY FACE BOOK, WHICH HAS NOTHING TO DO WITH WHAT WE ARE GOING THROUGH. IF YOU LIKE (lillylonghurst@gmail.com)SOMETIMES IT HELPS TO TRY TO CONCENTRATE ON ONE THING ONLY WHEN YOU ARE FEELING CRAP. IT COULD BE ANYTHING, EG, KNITTING, TAKING PHOTOS, ART, COLOURING ETC. IF YOU STAY ON THIS PAGE, IT MIGHT BE OF HELP TO YOU TO READ THAT SO MANY PEOPLE ARE GOING THROUGH THE SAME. AND SIMILAR AS YOU,

    I WISH YOU ALL THE BEST

    LILLY

  • Hi thank you for replying, it is nice to speak to others who understand. I have a young family so life is hectic and its difficult with this condition to carry on as normal like everyone expects. Would I be able to keep in touch with you via email?

    Best wishes to you too x

  • PLEASE FEEL FREE TO EMAIL ME ANYTIME, lillylonghurst@gmail.com, I FULLY UNDERSTAND WHAT YOU ARE GOING THROUGH. BY THE WAY, TODAY WAS REALLY GOOD FOR ME, OVER THE PAST TWO WEEKS I HAVE NOTICED THAT MY WALKING HAS IMPROOVED, TODAY I WALKED WITHOUT A GAIT, AND HAVE NOT FALLEN IN ANY HEDGES!!!! I WAS SO THRILLED I TOLD EVERYONE I SAW, THEY MUST OF THOUGHT I WAS MAD!!!!!! HOPE THIS IS ONE SMALL STEP TO RECOVERY....

  • That's fantastic! You must be so pleased you've had a good day! I hope things keep improving for you! Thanks for your email address, will be good to chat! Speak soon x

  • I would love to chat as well if you would like. I completely agree that this is such a lonely disorder, and finding the right help is next to impossible. I am currently trying to find a new neuro that can help, but from what no am finding is that there is only one here in my state that says he knows what end is, but he can't do anything to treat it. Do discouraging. However, I just found a new therapist gal that I am so hopeful with, she has just treated a gal with end who woke up paralyzed one day, and she is now up and walking again. So I can't wait to get started with her. I am so ready to get back to being able to be my regular self again. I am fortunate enough to be able to get around on my own for the most part, but still have issues with gait, voice big time, myoclonic jerks, dystonia, pnes, etc.. I'm just too dang stubburn, and fight through it every day and try not to let it hold me back. But things can change within a blink of an eye, I am currently out of work on unpaid disability, and trying to fight for paid, but without medical proof, they think I am full of crap, and should be back to work. Not a fun fight at all. Best of luck to you all, I would again love to chat with anyone If they would like. Cgarff1@gmail.com

  • I completely understand your frustration with the medical profession, I am in exactly the same boat as you. I was off work sick last year and have been on maternity leave this year but am due to go back to work very soon. How I will manage I don't know but like you said without medical proof you are expected to carry on as normal. Fingers crossed you get the help and support you need. My neurologist said the same as yours that no medication will treat this so I feel so alone in my battle with this condition. You can email me for a chat anytime. It's louise79.laj@gmail.com

    Best wishes to you.

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