FND

[tatiyana]

I asked my doctor for a referal to an FND clinic...he has referred me back to neurology? i have wasted so much time with these hopless people now im no where..feel so alone with this, im struggling everyday and after 10 years still no help or support...i just want this to end..this is not living....i have no faith in our local health trust........ i just cant carry on

[Hidden]

Please do read my recent post linking to a brilliant webinar from a doctor of ethics with EDS and Lupus. It took her a long time go get there but the point is that she did!

Listening to her webinar may give you some real hope/ empowerment unlike the neurologists who set up this FND website of hopelessness.

There are so many other conditions that might explain your symptoms - conditions many neurologists can’t be bothered to investigate or refer on it seems.

So please hang in there -some take a long time to get properly diagnosed and treated for the right thing but you will get there in the end. Trust your instincts and think about lodging a formal complaint about your neurology department with your hospital or even with NHS England if you can.

I saw my MP about this on Thursday because I feel it’s a human rights issue. I can only encourage you to do the same. The more of us who campaign against

medical gaslighting the more likely it is that neurologists will have to be accountable at last. 🤗

[tatiyana in reply to Hidden]

thank you, but io dont think i have FND. i have a massive neck issue...not slept for years but get told there is nothing wrong, its now affecting my eyes and numbness in limbs...doctors make you feel worthless xxx sorry just want to give up. my life is no longer worth liviong

[Hidden in reply to tatiyana]

I am sure our neck pain is real and has an organic cause.

You could, for instance, have a rheumatic disease causing this awful pain. Ankylosing Spondylitis, Psoriatic Arthritis, Rheumatoid Arthritis, Lupus and Sjögren’s plus many others can cause horrible neck pain and there are effective treatments. I have Trigeminal Neuralgia and constant tinnitus which are both a nightmare but I manage them much better for working out the cause and have learnt to co-exist with them. Neck pain like yours would push me to the edge but I’d have to find out the cause and insist on treatment. You have a right to insist on help for this pain. You do need to be able to get some pain free sleep in order to function.

A really good CT or MRI would probably show the problem and it might be operable or treatable through pain clinic or physiotherapy. You need to tell your GP what you are considering urgently.

As Galileo Galilei once said “All truths are easy to understand once they are discovered; The point is to discover them”. 🤗

[Hidden in reply to tatiyana]

oh my goodness, honey! i am so so sorry you are in this situation. it breaks my heart to hear you say your life is no longer worth living. please seek help! wishing you the best! you are not alone!

[tatiyana in reply to Hidden]

Ive wasted 9 years trying to get help? i cant fight anymore xx

[thinkin]

HI,

if you contact the FND Hope advocacy team they can help you find the right treatment and help. Hang in there. You can get better from this dark place. It's the trouble with the NHS under the tories, you have to fight like crazy when you are at your weakest. You are not alone and there are people who can help.

[Bailey09]

You have to keep strong I know it's really hard,I only found out Feb this year, and I'm trying hard myself it's annoying,the doctors don't have a clue they are hopeless, sorry i cant help much but we are always here to talk🙂

[pickleweed]

Tatiyana, I know what it's like to not want to go on anymore. Unfortunately, there is not an easy out.

[Derrian]

Hello I can identified with you on all levels this is so frustrating I have no life I just exsist

[tatiyana in reply to Derrian]

9 years of being fobbed off, yet fake people get everything, im too tired to keep fighting and im sure you are too...its a joke

[DonandLisa]

No one seems too inderstand

[Melek2323]

I've been through the same thing neurologist are like mad scientist,, im waiting to see a fnd specialist who because of covid has cancelled me 6 times very frustrating ive been labelled with everything, I wake up every day trying to be positive I understand how you feel x