I have been treated as depressed for 20 years, and now I'm told functional symptoms! 3 days ago I got this news. 2 weeks till I'm back 2 doc

Can anyone tell me if their symptoms come and go? Also has anyone fully recovered? Can symptoms get worse? What's the worst case scenario? What medications do I expect? How the hell do I explain it to family and friends? Right now I'm the only person I know with it... X

1 Reply

  • Hi. Welcome to this weird new world you have just joined. I can't answer all your questions, especially since I don't know your specific situation, however, yes, symptoms can come and go, yes, people do fully recover, even from the worst of situations, sometimes for no apparent reason, sometimes with a medication added or more frequently withdrawn. Unfortunately symptoms can get worse, a lot worse, or a lot better. No-one seems to know why, because no-one really understands what causes them in the first place.

    All the old ideas about what causes symptoms have been thrown out the window in the past 12 months or so, as the neurologists have picked up the ball that the psychologists dropped years ago when they just accepted it as a form of 'hysteria', from a 'wandering womb' (a centuries old concept of what this was all about.

    As to what meds...every person is different. What works for one actually causes symptoms to get worse for another, and vice versa. I won't tell you worst case scenario...it's much better for you not to know...because you most probably will never get there anyway. Just dealing with where you are right now is enough of a shock for you.

    How to explain it to family & friends...that's almost the easy part. Lots of people tell their family that it's like a soft wiring problem in their brain. The messages between the mind and the body get scrambled so although they might tell their legs to walk, the messages don't get through properly and end up creating other symptoms. There is such a huge range of symptoms, it's very hard to be specific here, so you would probably want to customise that to what's happening with you.

    I was diagnosed with Somatisation Disorder 6 years ago. It's basically the same thing, same cause, similar symptoms. I have had 2 remissions, one of them lasting for many years, since I first started having symptoms 17 years ago, and it has come back twice now after severely traumatising experiences. Whether the PTSD actually caused it or not or whether it was caused by some other medical condition that remained undiagnosed for the same 17 years, I don't know, but finally getting the correct treatment for that condition brought 90% of my symptoms back under control.

    The most helpful thing I ever did was join a support group. There are several around, but the largest and one of the best is the Facebook group called 'Functional Neurological/Conversion Disorder/fndhope.org' and can be found at facebook.com/groups/4461419...

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