Hello

Just a line to say hello my name is Richard age 51 living in worcestershire only diagnosed with fnd 3 weeks ago but have been going down hill over past 2 years. Have also had fibromyalgia symptoms for at least 8 years. Have no life outside these 4 walls so have plucked up courage to join.

[Lucy-15]

Hi Richard. Welcome to this group. Ive found it's full of really friendly helpful folk, all helping one another find ways of coping the best we can with this FND lark!

Although we all have very different symptoms...I think just knowing others feel just as frustrated as I do can help.

I'm 47 and 2 years ago suddenly found I had left foot drop and was limping, dragging my left leg

It's a long story, but to go from a busy, sporty lady to struggling to get about with a walking stick etc is a shock. I'm improving bit by bit, but accepting this condition and learning to slowly adapt my life is so tough, as I sure you'll agree

Be interested to know a bit more about the type of symptoms you experience , if you don't mind me asking ?

Take care

Lucy in Brighton

[Hidden in reply to Lucy-15]

Hi thanks for reply I am not good at this as over the past 7 - 8 years of fibro symptoms I have been told either we all get aches and pains or we all get tired and stop moaning and get on with it. About 2 years ago I left my job with a bit of a melt down (long story there two) I Started another job within a couple of weeks but after 10 days I woke one morning with my left arm completely numb and have not worked since. Things have gone downhill since and as with you have gone from fit working 14 hours a day to also walking with a stick. As to symptoms if you look at the list on the fnd hope site apart from seizures and speech I have had the lot some have come and gone but most are constant the worst I think is the stroke like symptom can be very unnerving. I have a good doctor but she has taken some pushing from me to get things moving. Sorry to go on but your the 1st person I have conversed with for a long time and going a little stir crazy. Just one last thing I have been lucky to find a neurologist who took the time to listen to me and also knows quite a bit about fnd that in itself is harder than you would think The 1st one I met with made me feel totally worthless which sent me so far down hill I just wanted to give up . So to all out there keep pushing they are out there don't give up.

[Lucy-15 in reply to Hidden]

Hi Richard...thanks for your reply. Wow you really have had a tough time. Indeed we seem to have some similar symptoms..my left arm is also affected now too. .I'm fortunate not to have seizures

I think it was my 3rd neurologist that referred me to Prof Mark Edwards who is based at St. George's hospital in London who specialises in FND.

I think on here someone once mentioned a FND centre near Bristol way too...as I've heard it's tricky getting referrals outside of your area.

But I had 5 days intensive neuro Physio under him in London last Feb

Very different to other Physio I had before and it has given me techniques to help me with my limp, stairs and slopes too

I learned about 'pacing'..I stil struggle with this but it does help lessen a little, the muscle spasms, cramps, pain and immobility.

Have you thought about swimming? A lovely chap on here Andy from Glasgow suggested it and I did found just floating in the water was a lovely feeling and to move more freely!

Anyway enough from me....Lucy

[DNE92 Moderator FND Hope UK]

Hi Richard

I'm a newbie to this site too and I find it helps. Sorry about your isolation. I know what you mean about going down hill. My problems started years ago but now that are getting worse. I'm so scared that I'm just going to keep on deteriorating. I had a completely different type of seizure 2 days ago. Normally I lie motionless but can hear, feel, feel pain but can't speak or move. But the last one i was severely spasming for a long time that an ambulance had to be called. My medic bracelet says that I have non-epileptic seizures with functional paralysis as that is what my Consultant Neurologist diagnosed. As I can hear during a seizure I could hear the paramedics constantly querying between themselves why it said it was non-epileptic as it looked epileptic. They asked my son (as we were having a coffee in Starbucks) and he said he didn't know and that they had tried everything else on me. He's really calm and collected when I have an attack - he'll be 18 in 2 weeks time) and as he knows that i can hear he sits beside me and chats to me and holds my hand. He also puts me into the recovery position. It's a weird world as the lead paramedic is my neighbour and we are friends and go to the same running club. I said to my son later that perhaps the other paramedics needed some retraining on how to give injections. I have tattoos and they have been nowhere as painful as getting the cannulas into my arms. My son said I was shaking and repeatedly open and squeezing my hands so much it was pretty difficult for them. Feel bad now about my joke. They pumped me full of diazepam to help stop the shaking.

Starbucks was great about things. They took my son's mobile number and phoned later to see how I was doing. My son did joke with me about whether we'll now get free drinks for a year.

I'm seeing my Consultant in about 3 weeks times and going to discuss all this. But it's bit like asking what's the length of a bit of string.

Regards.

Lou

[Hidden]

HI Have been to my local pool thinking it would be good but they have it so cold it made me feel worse on the other hand to hot has the same effect I know what your thinking (fussy git). I am still trying with the pacing myself bit but apart from memory my mind still thinks I am invincible. Louyse it's lucky you have your son with you (give him a pat on the back from me). My local surgery has a good nurse who can take blood or give jabs without feeling it recently though I had a bp monitor on for 24 hours god was i glad to get that of it took best part of a week before it stopped hurting.

[Lucy-15]

Hi Richard....just wondering how things are going with you lately in

Worcestshire? Being from nearby Hereford I've passed through your way many times. Anyway send me a private message just to say Hi if you like. I couldn't send you one for some reason

All the best Lucy.