Fnd help: Hi my name is john I have... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Fnd help

Renwick1 profile image
18 Replies

Hi my name is john I have been diagnosed with fnd last November but have had symptoms dating back to 1991 when handling organophosphate sheep dip .my symptoms keep changing and I could probably name a hundred symptoms , worst are heart disrythm and breathing locking but now night symptoms are so bad I wonder how I'm still alive in the morning ,curious as to is it autoimmune disorder which probably comes under the same umbrella

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Renwick1 profile image
Renwick1
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18 Replies
Lucy-15 profile image
Lucy-15

Hi there.....hope your having a better day today?

Think this site is invaluable. It's the only place we can all come to when struggling and really be understood.

Having said that, as the range of symptons is so very vast..it can take some time for someone with similar symptoms to read your message and then reply...

As for me, I've been suffering for 3 years with mobility problems, my walkings been so affected. Good days walk to shops without stick, bad days can't walk to my kitchen!

But only a few on here have similar FND gait issues like me, and they have been amazing helpful

Stay strong and keep in touch on here, everyone's so patient and understanding too

Lucy in Brighton

Renwick1 profile image
Renwick1 in reply to Lucy-15

Thanks Lucy maybe before long I will be up to speed with this site and able to chip in for all

Ailsaw profile image
Ailsaw in reply to Lucy-15

Hi , I also have mobility and gait issues with right side foot drag and weakness but fighting hard to stay out of a wheelchair it's a tough road

Ailsaw profile image
Ailsaw

I believe there are chemical and biological disruptions and neurotoxins at the heart of this condition , they are spending loads of money on CBT and psychological guessing games the whole thing just frustrates me as to me the patients are the key to the answers not text books and degrees , sorry I just walk away so angry as every time I go to an appointment they just tell me what I already know .

Renwick1 profile image
Renwick1 in reply to Ailsaw

Yes I think 21st century chemicals have a lot to answer for but I think we are all being labelled so the quacks have answers it's great the way they push us down the mental health route but I stood up to them until they ran out of answers they need to start at the patient and work back from there not the other way round

Lucy-15 profile image
Lucy-15

Hi there ...indeed we seem to be experiencing similar things....I also had foot drop (left tho) for about 6 months, it finally lifted .....lots of exercise to stop plantar fasciitis...it was so painful, foot cramps etc etc....but it's like my brain still thinks it's like that .....saw a few neurologists till was luckily referred to prof mark edwards, in London, who understood what was happening ....and diagnosed

' functional movement disorder', his neuro Physio gave me lots of techniques to help me manage my gait in Feb 2016, which also gave me more confidence to understand my left leg is still strong, just at times signals don't quite work !

Slopes and steps are still a struggle, even with my walking stick, pacing' is the only way, but is a tough balancing act eh !

At the moment, my saviour is a warm jacuzzi at my gym to ease muscle spasms and walking etc in the pool ....david Lloyd have a great 'one level' pool for this water Physio, if can find a pool near you. They have easy access steps and a chair lift to get into the pool, if needed, lots of folk there just walking in the pool or just floating about with the aids

Not sure , if this will help or if maybe you've tried this already.....but its helped my left leg muscles stay stronger, eases painful muscle spasms a little and it's pain relieving too, when floating in the pool.

The colder weather is making symptons a bit tougher that's for sure, are you all finding this too ? Thanks Lucy

Ailsaw profile image
Ailsaw in reply to Lucy-15

Pool therapy sounds great only got three sessions with neurophysio and now have some techniques to try but no way enough time with her. Since cold weather started I now have really sore joints , biting my tongue seems to be the in thing at the moment 🙁

Silver_Flower profile image
Silver_Flower in reply to Lucy-15

I have left foot drop for the last 3 months. I’m attending a neuro physio and practicing walking. Yesterday, my neuro physio said to me during the rehab to imagine I was in a pool and water was helping me float!

There is a sports center near my place, so maybe I try that.

Lucy-15 profile image
Lucy-15 in reply to Silver_Flower

Hi there...,yes sounds like a great idea I'll try that too thanks.

Ijust love that walking in the pool I can do without limping :) helps remind my brain maybe ....how to do this on land more n more I hope!!

Let me know how you get on thanks Lucy

Renwick1 profile image
Renwick1 in reply to Lucy-15

All the best Lucy they say it is good for pain control but I don't have a lot of pain only in bad days but insomnia which makes everything worse along with chronic fatigue

Renwick1 profile image
Renwick1 in reply to Silver_Flower

Anything is worth a try

Renwick1 profile image
Renwick1

I have done hyperbaric chamber which did help but I liv to far from it

Lucy-15 profile image
Lucy-15

What's a hyperbaric chamber ? Did it help at all ? Thanks

Renwick1 profile image
Renwick1

It's actually a pressureised diving bell that is in a room and they take you to different pressures so you can breathe in 100 percent oxygen which is supossed to heal the body. It is mainly ms people who use it but now a lot of sport injuries use it to speed up the process

Hi there...my name is Jenn I’m new to this site and I have conversion disorder also called FND! I was finally diagnosed a year ago after a year of doctors, and hospitals and no one knew what was wrong with me! My symptoms came out of no where...weight loss was the first 15lbs in a week, chronic nausea, blood pressure was real high then real low...to the point the tremors and non epileptic seizures would start..my whole autonomic system was off... my skin burned I could not walk my speech was slurred hearing was off extremely dizzy and off centered...it was awful.. I could not function at all..I developed extreme panic disorder..did not leave my house for a year...I went to every doctor you could imagine..nothing was wrong..there was def something wrong as far as I was concerned! My husband started videoing my tremors Thank God he did! Finally the only doctor I have not seen was a psychiatrist..I was desperate to find out what was wrong! He took one look at the video and said you have conversion disorder..I was in shock..he said what tramatic event has happened to you? I started crying and said I lost my brother a year ago and my family buried him without me cause I was on vacation they wud not wait for my plane to come in! I hope this helps you cause it has helped me dramatically! You need to find a really good psychiatrist one who deals also with pain! Your first step is you have to move..keep moving the best you can..I know it’s hard but you can do it..you need to get to a psycho analyst not a psychologist..psycho analyst bring you back in time and then forward again...you need to uncover the trauma that has happened in your life.. conversion disorder comes from constant trama...then it takes that one big trama to set the conversion off..it’s the brain can’t take it anymore so it starts to direct the pain elsewhere throughout the body! Get yourself through your psychiatrist on medication I am on libruim and trintellix at night and a pain medication to control the pain and every week I go to my psycho analyst! It has taken me a year but I am walking talking blood pressure is back to normal my body is now functioning at its normal pace..don’t get me wrong I have my days that I hurt more than other days or I’m fatigued but I got my life back! Please if you need more info from me please reach out..I will reply back with anything I can help you with! Hope this helps! There is light at the end of this dark tunnel! 👍🏻😊

Just telling my story...no need to be so rude!

Actually maybe you shud of said wow that’s great that you found the cause to your FND...did you ever think that maybe someone else may have had trauma in their life that my story may pertain too and help them...if my story did not pertain to you maybe you should of not commented! We are all here to help one another.. let’s keep it that way!

Renwick1 profile image
Renwick1

I hope that your not saying that I'm rude ,I have a face to reply to and this site is for positive reply , we are all suffering in different ways and only see hidden as something to hide . I still can't work out this site properly which I wish I could ,hope it's not me you are referring too as I would not want to hurt anyone on this site . John

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