My symptoms

[Grumpyoldmaid99]

Hello I was diagnosed with fnd in 2016 and again in 2019. I am in a wheelchair now and taking pregabalin and baclofen among others. I have permanent nerve damage to my left arm (mapped) and lower back/pelvic floor. I have an essential tremor and small brain lesions. I was advised by a neuropsychiatrist this year that my symptoms are psychosomatic. Where on earth do I go now? Respect to fellow sufferers.

[Kosh1689]

If you have conversion disorder then you need counselling. If you have FND, you need other treatments since it is a neurological issue.

[Grumpyoldmaid99 in reply to Kosh1689]

It's a total minefield, is what it is. There is no consistency across neurology and/or neuropsychiatry. In my own experience. I'm groping round in the dark trying to find my footing to move forward before I end up in a godforsaken nursing home.

[Paddoodlz]

Hi. I am in the same boat. I was actually refused a referral request from my GP to neurologist I saw while in hospital. I have no where to turn either. It is NOT psychosomatic!

[Grumpyoldmaid99 in reply to Paddoodlz]

Hello, omg have you changed your gp? Gone to your MP? Someone once told me that there is always somewhere/someone to complain to. It's just finding them. That's been very good advice for me. These people are all accountable to some professional body or other. Don't give up, you don't deserve their ignorance.

[Paddoodlz in reply to Grumpyoldmaid99]

Thank you! Either do you my friend! Unfortunately, I dont think I have it in me to fight

[Grumpyoldmaid99 in reply to Paddoodlz]

We all have it in us. We just have to find the key. For me it was a call to a Samaritans type service because yes the "bad days" are very very bad. But, it helped to identify something I could connect to instead of disconnecting from life. Sorry if that's a bit dark but you really can't let ignorance win. You're worth more than that.

[Paddoodlz in reply to Grumpyoldmaid99]

Aww thanks. Something for me to check into

[cocoferraro]

Hi, I am on the same medication as you, but I am not in a wheelchair yet.

My heart goes out to you.

I have been watching and commenting on these posts for 6 years.

I was diagnosed with FND six years ago by the brilliant hospitals and doctors where I live. They have done everything to help me.

But, when it boils down to it, I have been told there is no cure, as long as you are not in pain (which they can help you with) then that is unfortunatly the lot for us. Our symptoms can get better or get worse, stress is a BIG factor, we may never get better, or we may get better then relapse, or we may get better altogether, the doctors SIMPLY DO NOT KNOW. What we have is a fairly new condition with many symptoms and the doctors etc are still learning about it, thats why some of us have been treated badly(depending on where you live). But unfortunatly the only advice I can give you is that if you are pain free then we must some how try to carry on.I send much love to you, I don,t think i have been of much help, but if you understand what is happening to you then some times it makes a difference to our lives,

XXXXXX

[Grumpyoldmaid99 in reply to cocoferraro]

Bless you. Thank you for your positivity. Unfortunately I am in constant pain which medication dampens rather than relieves. I was advised by neuropsychiatry however that I could be "cured" thru physio and pain clinic, hence my sardonic question. My issue with them is my condition is clearly progressive, but this has been largely disregarded thus far. You are most fortunate to have people sensitive to your condition on hand. Long may you remain mobile and active xx

[cocoferraro]

Hello my lovely,

I am so sorry to hear that your medication dampens rather than relieves, go back to your doctor and ask for stronger pain killers (which are avaliable), you cannot be cured, but only time will tell as with physio and pain clinic which you mentioned can make your condition tollereable and a little better to live with. I dont mean to sound rude but how do you know that your condition id progressive. Sometimes we can get to our lowest, eg legs dont work, feeling ill, cant walk, balance issues, seeing things that arn.t there and so on, then we can follow all the things that are open to us(for gods sake, we will try anything!) and sometimes these classes supplying wus to be more physical etc can have a small effect, but also you are going somewhere different each week, will make new friends who have the same symptoms as you and this may help you a great deal.

I NOW YOU ARE GOING TO THINK , NO I AM IN SO MUCH PAIN, CLUBS OR GOING TO SESSIONS WILL NOT HELP ME-AND ITS ALL CRAP)

Nothing to do with this, but my husband just had open heart surgery and a bypass and they lay on rehabilitation classes afterwards, with exercises etc. AND DO YOU KNOW WHAT, ALTHOUGH IT WAS MY HUSBAND GOING, I WENT WITH HIM AND MAKE SO MANY FRIENDS!!!! MY LIFE AND PAINS BECAME A LITTLE EASIER, ALSO I HAVE VERY GOOD NEIGHBOURS WHO YOU CAN JUST GO TO AND SPILL ALL YOUR SHIT.

dO YOU KNOW WHAT MEAN???

iF I WERE YOUR NEIGHBOUR, I WOULD DO MY UPMOST TO MAKE YOU FEEL SO MUCH BETTER,

iF YOU LIVE NEAR ME , THERE IS A BIG HUG HERE FOR YOU, HOPE I HAVE MADE SOME SENSE!

lots of love and kisses to you for christmasx