FND Conversion Disorder is still FND

[DNE92]

Hi Peeps

I don't want to start a war of words or anything of that kind as I find this site really really important to me and know that others do and it is a genuinely friendly place and a safe place. As we know FND is an umbrella term for a variety of symptoms of apparent neurological origin but which current models struggle to explain psychologically or organically (FNDHope).

It's just that I saw in a reply to a recent question on whether FND was curable that it wasn't but for those who had psychological problems once the problems had been identified then they were cured.

I have been diagnosed by Dr Jon Stone as having FND (Conversion Disorder). I am an FND sufferer like us all and attend his clinic regularly especially given the severity of my seizures (daily). I also unfortunately have a very rare (and equally misunderstood as FND) mental disorder. It is Complex-Post Traumatic Stress Disorder (C-PTSD). It is distinct from the more widely known Post Traumatic Stress Disorder. C-PTSD starts from a very abusive childhood, which causes irreversible damage to the amygdala in the brain. It leaves C-PTSD sufferers feeling prolonged feelings of terror, worthlessness, helpfulness, excessive shame and low self-esteem and continuous suicidal idealisation. As to the latter I have nearly died on a number of suicide attempts and on the last one actually arrived at hospital dead. They managed to rescuiate me, put me on life support, tubes everywhere bla bla bla. 3 days later I just strolled out of the hospital. My GP told me that the hospital does not know why I did not die - just another medical mystery. Whoae my life is being to sound like a plot from Scooby-Doo. Lol. My medical records note that I am a very high risk of completed suicide and my GP (from my last practice who I just adored for her willingness to explore new conditions and was incredibly empathetic) says she walks through her surgery doors every Monday morning waiting to be told that I have completed a suicide.

I suffer many, many of FND symptoms including the embarrassing loss of control of bowel and bladder - lovely when you nip out for a coffee at Starbucks! Not quite what the other customers thought was on the menu.

I was also assaulted by a paramedic on duty when I took a seizure which affected my legs, paralysing them. I was an inpatient at a hospital for my own safety and when being returned to the unit from A&E I took the seizure. The paramedic demanded that I walk to the ambulance and get myself into it. When I couldn't he simply assaulted me and dragged me into the ambulance. My complaint has been upheld by the Scottish Ambulance Authority who have apologised profusely. I have thought about reporting him to the police but am told that it could worsen my health.

I have tried CBT, DBT, mindfulness - nothing has worked. So I would agree that FND isn't curable but please don't neglect us who have FND (Conversion Disorder). We are just as distraught, in pain and have had our lives and careers turned upside down.

Thanks for listening.

Lou x

[andyglasgow2016]

Thanks for sharing that Lou! I agree there are many terms being used by different people and since you meet with The Godfather of fnd , you know what you’re talking about!

I’ve met Lou and have to say she’s an absolute hoot to be around with! Her family are a real joy and infectious humour and her take on life ! if you get the chance to come along sometime to a meetup in Scotland I highly recommend it! Talking of which ... we are due one again soon before the weather drastically changes!

[julesdiplopia]

Dramatic history Lou. But without starting a war of words.... FND, may or may not be curable, as an umbrella term it covers SO much. And that is my issue with it, that the term covers SO much, that it becomes a dumping ground for anything that lazy doctors can't figure with a single test/examination. And then we get no treatment or help.

I have been given a FND dx, only for it to be dropped 5 minutes later, when the FND rehab centre nearly killed me and couldn't think of anything else to do. So now I am told that it is conversion disorder/hypochondriac!

[Katherinedeane]

Thanks for sharing - yes we are all rather complex - and FND is definitely a syndrome ie multiple causes similar-ish symtoms - so some may be curable, some not. Some caused by psych challenges, some not. Some will therefore respond to certain therapies and some will not. But what we all have is that its real and its a bugger and we wish most of the medical workd would get its head out of its arse and investigate this properly. Hugs

[Leesaloo]

Hi, it's great you can share your past on here, so many can't, it must help to express your pain, anxiety, stress etc. What I find so frustrating is I know FND is an umbrella term as we have all got FND from sooo many different ways, some people have even gone to bed and woke up with it, it's just mind boggling. So many of us with this label struggling. One size does definitely not fit all. Our symptoms are so complex, different and the same. I guess all we can do is keep trying, keep looking for answers, and keep supporting anyone and everyone who is struggling just to get through another day. It's so great to know your not alone. I think a lot of us take years to get diagnosed and then left with nothing to just go home and think WELL where does this leave me. Still unknown. Can't beat the support of someone who knows what your day to day life actually is. Thank you to all just for reading.

[salfnd]

Hi lou, I am so sorry for the way that you had been treated by the Paramedic, that is utterly disgusting and I hope your complaint is taken seriously. Thank you for sharing your story.