FND

[chelz1994]

hello

i don't know how theses online support groups work so its my first time trying them.

reason for joining is i started with lower back pain in Feb 2015 and i thought it was because i was doing to many hours at the job i was in (carer) but as it got worse i seen a Dr which then refereed me to the hospital close to me .. they finally found the problem start this month November 2015 after loads of x-rays and MRI's and recent over night stays and video recordings i get very bad spasms in my left leg which if i try stop it goes into my arm and then my neck finally been diagnosed but never heard of such thing called fnd so was asking for some advice from people who struggle with the same sort of thing and whether after being refereed to pain clinic and physio whether it ever go away and live a normal ish life or is it for life now ?

i have spasms and weakness in the whole left side of the body and neck cant do many things without help and my left leg is turned inwards

in any case advice on how to over come this would be much appreciated because i don't understand half of what doctors or support people tell me

thanks in advance x

[Danslatete]

Just wanted to say hello! I don't get spasms or any movement disorder myself so I can't help you there, but there are others who do have similar issues.

You have plenty of older posts to read with lots of useful tips on them.

[chelz1994 in reply to Danslatete]

Thank you ☺️

[piggy0704]

Hi ,

Just like you I have been diagnosed with FND and have pain, spasms and numbness but on my right side. I was a teacher but unfortunately was unable to continue. I was diagnosed last year in June and it was a very hard journey but at the moment i am symptom free. I happy to tell you more if you have any specific questions

[piggy0704]

sorry forgot to say I went to see a normal physio who was not much help but refered me to a neuro physio how was amazing. got me back up walking, and independant

[chelz1994 in reply to piggy0704]

Hi thanks for reply only recently been told I've got it so I'm still feeling like crap and in dinaly about it as no one in my family has got it I have learning difficulties and other health problems but never effected my life style or my job I'm on 21 so don't no how to deal with this my family and partner are really supportive but there's only so much help they can give as they don't understand the pain I have which ends up me snapping at them my mum is looking after me most the time cause the numbness and strength I've never had problem working and going thought all the benefit claims aren't the best of Joy but my left leg has turned in through the this process we don't understand why but it has left me unable to work but I'm scared that I won't be able to claim help as well I just really wanna go back into working but don't no what can do to help me get better faster ? X

[chelz1994]

I have also applied for pip but other people with same problem has been rejected but I can't live on the Esa amount times I visit the hospital xx

[piggy0704 in reply to chelz1994]

Did you appeal your pip? I was refused at first but at appeal I just sailed through

[chelz1994 in reply to piggy0704]

Not been yet got it on 11th but trying get much info on my disorder as I can't cause can't understand something never heard of

[Budgie2]

You can look at site fndhope.org and join the online facebook community

[chelz1994]

Thanks

[padraig34]

hi keep on going dont give in it makes you stronger