Not really posted on this much sept when I got diagnosed with fnd in October since my right eye is completely closed and face is weird like lip and eye brow dropped however this had been the case since 2018 and got the diagnosis on October 2020 since wasn’t really any improvement and gets worse when near flashing lights I go dizzy and faint however the last few weeks my right arm keeps going heavy/dead and pins and needles and is sore however the doctor/neurologist just keeps saying flashing lights /fainting and arm going dead is related to fnd I don’t know if I am just over thinking it as I have been fighting with the doctor etc for two years about what’s happening at the start but feel like there just putting everything down to it now 😏 as I said above I am just new to this and don’t really understand it all but does anyone else get this ?x
Sorry for long post 🙈
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Chantellemc
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I totally understand. I starting having fainting episodes 20ish years ago, mostly around flashing lights or when stressed/tired. I started getting pins and needles and numbness in my right arm 3 years ago, last year I also started to get these symptoms in my leg. I was only diagnosed with FND 3 months ago after seeing many doctors who told me they couldn't find anything or my symptoms weren't affecting my life enough to be worth investigating what was going on.
Am sorry to hear your going through this too , I went to bed fine April 2018 and woke up with my eye closed and has been ever since had seen by all different hospitals and consultants and got told all different things from Bell’s palsy to mini stroke to all different things but got the diagnosis in October 2020 , however feel like it’s all trigged more symptoms since then with the fainting dizzy spells and bad facial dystonia and now my arm keeps going numb and pins and needles and lasts about 15/20 minutes at a time , when I went to doctors they said it couldn’t be that sore it’s linked to fnd you just have to learn to live with it but honestly broke down it’s absolutely painful when it happens and feel like some doctors don’t really fully understand it either.
I totally agree about the doctors not understanding. I find the pain one of the worst parts. I often get into a cycle of pain, then not sleeping due to the pain, then the pain getting worse because I haven't slept. The only relief I have found so far is a combination of seeing an osteopath and naturopath and doing pilates.
I manage as much as I can by taking one day at a time. But it still gets me down and knocks me for 6 regularly.
Hi Chantellemc I understand where you are coming from I started with headaches in 2019. Went to see neurologist February 2020. I started with left sided facial paralysis left eye droop but only every week or so now I get it every day and I also get pins and needles in left arm and foot. The neurologist last October 2020 diagnosed FND as I have other symptoms too. I went for a second opinion last Friday to see a different Neurologist and they have diagnosed chronic migraine syndrome as well as FND. I can’t tolerate bright lights flashing or not, loud noise and certain smells. I have similar symptoms to yourself but also getting forgetful, writing back to front slurred speech, tending to walk towards the left instead of straight forward, constant headaches especially if tired? There is a lot of symptoms with FND some only have a few symptoms others have a lot. I’ve finally had to accept FND as a diagnosis but I do believe once you do you that you can get help. I am waiting on physio to help with my face and speech and to see a psychologist. So please don’t think you are alone or no one is listening as the symptoms are real. Someone on here my apologies as I don’t remember who it was said to say to people “I have a brain condition that affects my coordination”. Which was a fabulous way to explain to people what is happening to us? Ask to see another Neurologist it sounds like you too may be suffering headaches like me?! Sorry for the long reply. I hope you feel better soon don’t let the frustration get to you if you can help it X
Thank you so much for your reply , That’s a great way to explain it never really took it in or understood it myself but that’s helped actually thankyou & yeah definitely I am also getting physio just taking one day at a time just didn’t understand stand how I could go to bed fine and wake up in the morning and everything changed during the night and no one knows why and definitely suffer with headaches too hope your ok xx
I’m glad I could help x I’m doing like you one day at a time glad you have started physio good luck to you and I pop on every few days x But loads on here with great advice👍Take care of yourself and anything you need to ask feel free X
hello sweetheart,I am so sorry to hear that you are so unwell
My eyes are affected too, and the flashing lights, pins and needles etc are all experienced by sufferers of FDN, sometimes the symptoms can be so strong that you thing surely this is something radical!!!
Functional Neurological Dissorder is exactly what it says, Our functions, our brain and the dissorders that it gives us, I am aware that it is different for every person,
The only advice I can offer is that you need a very good GP and excellent neurologist, and still it is hard to get your head around.
Thankyou so much for your reply , Sorry to hear your going through it too ,
Yeah just feel like symptoms are getting worse or new ones but it the nicest way possible I am glad to know it’s not just me that’s suffering with the flashing lights dizzy spells and pins and needles as kept overthinking what if it wasn’t to do with fnd and was something else 🙈 still don’t really get it all so just taking it one day at a time see physio on Friday and back to neurology next week and my neurologist has gave me a website to read so hopefully helps me understand yeah that’s a good way you have put it too , this wee group has been amazing thankyou for your support to and you take care , always here if you need to talk too .xx
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