Just Diagnosed - FMD

So it started when I was 16 I am now 22 and I have just been diagnosed with a Functional Movement Disorder. I have absolutely no idea and no background, little support too but judging by lots of post here I don't seem to be alone with that one. I have always felt fobbed off and told I would grow out of it however after pointing out my symptoms have increased and changed even recently they decided to back off with that one a little. My symptoms are;

Left leg spasms - these usually start very obviously shaking but can quickly turn into high flying kicks (especially if any1 try's to touch/control it) these spams can be brought on for no reasons, stress or by touch of someone else. I suffer with serious back pain, my bones generally just feel like iv been inside a washing machine. I find that I cannot lay flat on my tummy - this is strange but everything feels like it's sinking into me when I do (again painful)

I also have nerve / electric shock pains pretty much all over my body, fingers, toes, legs the list goes on with that one.

I have bad anxiety and usually poor concentration. I have had a number of tests which have always come back normal, I have had 3/4 neuro referrals after mostly getting looked at like a weirdo. It's safe to say it's lonely when the doctors can't/won't help. Does anybody else have symptoms like mine, I get used to the temour but my main concern is the nerve pain??

7 Replies

  • Hi Rebecca, I'm so sorry that you have been going through this for the last six years, I have too, in fact I'm going on seven years now. I get foot spasms, both feet. I have leg tremors but usually only when I've overdone any form of exercise (I use a therabike at our local MS centre). I also have the lower back pain and pain at the top of my neck. I have weakness now in both my arms and feel like my body is not strong enough to hold me up. I think I'm one of the lucky ones that doesn't have excruciating pain, mine pain I control with pacing myself (one job per day), paracetamol, and relaxation methods. I do however have three daughters with a condition called RSD/CRPS which causes them a lot of pain and is also on the FND scale. It might be worth looking it up? X x

  • Hi you have been suffering for such a long time and you are young to have this. there are many of us have you joined the fnd closed group? it will give you lots of help , advice and support.

    who diagnosed your condition? neuro consultant. one of the problems with fnd is that everyone has a range od different symptoms. mine are, serve pain running through out my body and get sharp pain in toes fingers but travels around like a hot knife couple of jabs and moves on to another part of the body . I get NEAD, constant headaches and it moves around my head just to wash and comb my head can be painful. deep ache in legs and arms limited mobility have a stair lift and wet room, use stick and wheelchair or my scooter when out. dystonia in both hands leaving me only with thumb and fore finger to use in both hands caused pain and weakness in wrists. fatigue , been feed by ng tube since 2012, can eat limited but this keeps me steady. lost of voice since February. life is very difficult and unpredictable as pain varies hour by hour , mood swings . there are in patient treatments available which I am being accessed by wend of the month, ask your consultant . where do you live what neuro hospital are you under. I wish you well, the trick is to except and deal and not fight it, I haven't done that yes as life is pretty grim as it's affected my personality family and friends I don't socialise as I can't enjoy food , as talk hate having people round which is difficult for the rest of the family. take care check web sites to gain knowledge and understanding it may help. take care Jill xx

  • Hi, I too have only recently been diagnosed. I have spasms mainly in my neck and left eye but my hands can go into spasm when I am carrying things. I have the burning electric shock nerve pain that radiates around my body anywhere. I also have other symptoms. I have found taking a daily multivitamin or just vitamin b supplement helps the nerve pain even though I am not deficient in anything. Best wishes to you.

  • Can I suggest you come join the Facebook Group and talk with many more of us around the world. Click on the homepage link at fndhope.org

    We have support, advice and resources available to help you better understand your condition and also find medical help and therapy.

    Good luck.


  • Yes , I have just after years of suffering , ME and FM i have now been told it is a neurological functional disorder and I have to see a Neuro Psychiatrist . As you can imagine I am now labelled with this condition and I am afraid to see anyone about my conditions now as I have been but in this real but very confusing medical disorder box which seems to stem from trauma I suffered as a child, I buy into some of it, but I didn't take my own kneecaps out as they were arthritic by the time was 18 , I am now 48 and just about coping with life ... I run my own business, which allows me to work when I want , however fatigue, pain and depression is now forcing me to look at claiming benefits, something I have avoided for the last 5 years when everything went wrong with me.

    Good luck and know you are not alone, even though it feels like it ....I just take one day at a time and see what weird symptoms I have on that day, today I have fatigue and spasms in my left hand, altered sensation in my legs and feet and migraine , something I just started getting .

    It is character building , but I have all the character I need right now thank you very much and would like to be able to live a life where I am out of bed for more than just a bathroom visit .

    I wish you well and hoped that helped.

    Yours sincerely

    JJ Kane

  • Unfortunately yes I do have symptoms like yours and every time I go for tests it is the same culprit - FND . Sometimes I wish that they would find something else that it treatable, over the years from age 13 to middle age I have had everything from growing pains to malingering and there being nothing wrong. For many years I would wish that they would just admit that they didn't know rather than dismissing me saying there was nothing wrong. However many doctors are now admitting they don't know and although frustrating at least they now take me seriously although admit I probably know more then them about it! And so Without sugar coating it, you have to learn to live with the nerve pain. Go to your GP about the pain and see what they can do to help. I went on a pain management course at the Walton Neurological Centre which is part of Liverpool university hospital. I went on a months programme of 4 days each week and it did really help to learn about pain and coping mechanism, the course really helped but you have to bite the bullet and give it your all no matter how much it hurts, they also did day courses and week courses. I know there are now other programmes like this around the UK so get onto your GP and ask them if you could be referred to one.

    Another coping mechanism is to laugh. The old saying if I didn't laugh I'd cry is great advice in this situation. For example: The other week when I was out with a family member I kept getting electric shock pains on my shin and every time i got one whilst walking with my 3 wheeler trolly every few steps I'd go "ow" as it did it again, although it really hurt it was rather amusing as I went down the street saying "ow, ow, ow!) After it happened 10 times my mum and I were in stitches as it sounded like a bike with a squeak every time the wheel turned. I also am very slow now as walking is a huge problem and when I am not in my wheelchair I decided that at least being slow has it's advantages such as being able to notice more about the world around you. So try to block out the pain and look for the positives and keep smiling!

  • I have some of the symptoms you have, I know how you feel! My mom wasn't/isn't all that supportive. When I went in for my first mri (came back clear) I felt pretty happy until she told me that, my doctor was really angry! That it cost like, 8 grand, and my symptoms did get worse. just earlier I was talking with my sister and I was pretty upset, she said that usually only men in their 40's get PD( ( I know that may not be accurate) then my mom says "well never say never because you never know..." she says I'm seeking attention. I hope for the absolute best for you and be strong you'll be in my thoughts.

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