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Functional Neurological Disorder - FND Hope
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monday morning rant

upon having fnd for 12 years now to the point that i am now housrbound with no speech unable to walk very far , feeling like im constantly wired up to a car battery etc...

i end up doing my own research on the condition on the internet of which the neurologist told me to do,but it infuriates me when you see doctors and health proffessionals making comments that fnd sufferes are a drain on society

iwould love to get these people in a room to answer these questions

do you think i choose to be housebounf?

do you think i choose to speak a load of words that nobody can understand?

do you think i choose to be a burden on my family?

do you think i choose to give up any quality of life?

do you think i choose to have a feeling of ants crawling and biting me all over?

do you think i choose to have to use a wheelchair?

do you think i choose to sit in a chair and know that my general health is suffering as well now?

do you think i choose to have to wear a pad just in case i dont make it to the bathroom?

do you think i choose to wander around making silly noises and dribbling?

do you think i choose to drop hot food from the oven because my arms have locked up and my body starts shaking?

do you think i choose to have pain in my head that is like someone running malten metal through your head?

do you think i enjoy being stared at?

do you think i choose being affected by noise that the slightest bang makes me jump out of my skin and end up with tremor fest?

the list of questions go on ,surely if these people were to live like i do then the lightbulb would go on and they would realise that i dont choose to be like i am and the guilt and shame that i can carry as my symptoms are unexplained and called fnd or conversion disorder or somatoform which goes to show that nobody hase a clue as they cant decide on a name, if doctors were to stop saying its because of trauma and stress and agrree that trauma and stress can aggravate the condition but is not the cause and wasting nhs money on outdated therapies and treatments that are only sticking plasters that fall off and actually rethink what is actually needed and listen to sufferers of fnd instead of assuming

sorry to be on a rant but i am just so frustrated at the way us fnd sufferers are treated and i want for a better understanding of this condition

1 Reply

Hi Marie. I've just read your message, 12 years 😢 Must seem an eternity for you. I too have had most of the symptoms you have wrote plus like you lots of others, to numerous to remember. After nearly 3 years a lot of mine have gone. I had a brain block injected into my brain both sides to stop the pain you've described in my head (I've forgot the proper name) it worked for me and that pain has not returned. But I was left with numbness on my left side mouth, tingling to burning on my left side tongue, left leg dragging, left foot turning in, occasionally the shocks or ants in my back and neck and the god awful fatigue that just never goes. In December I went to queens square in London for 1 month for FND rehabilitation. Although FND cannot be cured they taught me techniques to help, the best one for me was putting my heels down first when walking which stopped my limping and dragging. The fatigue has too be managed daily. I'm walking further with 1 off my dogs daily but the fatigue I'm still struggling with, if I overdo it my symptoms come back. It's such a fine line to walk and my progress is so slow. I'm happy I'm making progress but just live unsure 😐 how long it will take. I guess I'm trying to say there is a light at the end of the tunnel for some of us but what that will be is hard to know. When someone writes take one day at a time I know they are right but it's so hard to not want the life we had back. Struggling on. Best wishes to all. 👋


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