FND/Cervical Dystonia ( functional hyperkinetic movement disorder (

[PrincesspreRaphaelit]

Does anyone have FND with Cervical Dystonia (neck spasms ) ?What helps manage symptoms ?I have trouble eating anything that’s not soft has anyone found any solutions ? (I cannot approach my swallowing difficulty with my doctor because I was told that I invented a movement disorder to avoid eating )Whole team thinks I have made this up to avoid school ,I do not know what to do .

discharge letter has questions marks in it .

My medical advice from hospital was get a hobby (literally)

Physio asked whether I’d decided to copy this

Doc said in letter only exists when being examined /in docs presence which is not true .

I was given sedatives which I an allergic too and put me to sleep

Gp is asking safeguarding questions .

No one listens to anything I say

Being sedated all day is not it

[Shelford24]

Sorry to hear all you’re going through. I don’t have Cervical Dystonia, but have suffered neck spasms due to migraine and the pain left me only able to eat soft food.

I was given one Sumatriptan tablet to take and haven’t suffered the problem since. Maybe this might help? I’m also allergic to lot’s of medications and this seems to really throw doctors as they think I’m being difficult!

Hopefully someone will listen soon, I totally understand your frustration on that one.

[PrincesspreRaphaelit in reply to Shelford24]

Thank you so much , it is good to know one is not alone .🦋✨✨ I hope doctors treat you more more compassionately in the future .

I’ll have to explore that option with my GP thank you so much for suggesting it , they did not provide me with many options .When the neck spasms are worse I also have headaches so hopefully that medicine will cure it .

Everything I got prescribed had milk in I am allergic , so after going to doctors I was getting iller and they acted like I was just being difficult too .

Thank you

[Shelford24 in reply to PrincesspreRaphaelit]

Sorry to hear it’s been so difficult for you, hopefully you’ll be able to find something that works. Maybe a pain management clinic referral might help?

It’s hard to get to them to understand that if pain was dealt with then the other problems that follow such as frustration, anxiety and low mood would also be dealt with at the same time.

Wishing you all the best it, it might be worth contacting the dystonia charity for any support or question you have.

dystonia.org.uk/

[PrincesspreRaphaelit in reply to Shelford24]

Thank you so much ✨💫✨I will give that ago .

[cocoferraro]

Hi, I think I have the same thing as you, have had FND for over 8 years, but have had trouble swallowing, recently I have had a spasm of the windpipe, OMG pain is unbelievable, told doc and she told me to take 1mg Lorazepam, ok to say, but when u get it in the day time, if u take lorazepam then you are a zombie for the rest of the day. have been coping like this a dont want to bother my GP in these times. Recently been having trouble swallowing my meds also, dont know where to go from here. Take care xxx

[PrincesspreRaphaelit in reply to cocoferraro]

I hope you get treated with the compassion you deserve 💖I see that the the FND, swallowing and spasms are all connected then .

Yeah !!! The benzodiazepines that I am on for the spasms make me feel like a zombie too.I am knocked out by them

I just go to sleep if I can because there is no difference really .

If you feel like you need to go to the Gp they are there to help , so call up if you can ✨💫

I found soft foods soups helped reduce the pain but it is not ideal .

I hope everything is resolved swiftly

Take care too ✨💖

[cocoferraro in reply to PrincesspreRaphaelit]

thank you for your lovely reply. perhaps the only way to go is to take the meds and feel zombie like, my husband is all for it and says the doc would not prescribe them if it was detramental. I AM GOING TO CONFESS NOW THAT I HAVE HAD SO MUCH PAIN IN THE PAST AND SUCH A LOT TO DEAL WITH THAT I DO NOT MIND FEELING ZOMBIE LIKE AS IT LETS ME REST AND SLEEP WELL-I FEEL SO BAD THAT I HAVE GIVEN IN-DO YOU THINK I AM A BAD PERSON AND NOT FIGHTING ENGOUGH???? SO SORRY FEEL A FAILUREXXXXXXXXXX

[goatsnchickenz]

HI PrincesspreRaphaelit. I'm sorry to hear your story. I understand as I've been told I am faking.I tend to choke on my spit and water. Food is not so bad for me. I recently saw a speech pathologist who assessed my swallowing. She found a delayed response when I'm drinking clear liquid but not from thicker liquids or solid food. She was able to help me by giving me suggestions on "how" to swallow. I have FND and Ehlers Danlos hypermobility. I do not suffer from cervical dystonia but I have cervical stenosis in three places which I believe causes my arms to go numb- (neurologist wouldn't comment on numbness). FND causes periodic paralysis in my legs. Take care!