Functional Neurological Disorder - FND Hope

Is the twitching neurological? I need help, driven mad!

Hi everyone! Not posted on here for a while. Going to try and keep this as short as possible. I really need your help as I am literally at my wits end now with my health to the point where I have contemplated suicide as a "way out". I know it sounds weak, however I am struggling really bad and have literally NO control of my life anymore. I worry so much that I am deemed a hypochrondriac or psychiatric, despite having physical problems that are visible via tests etc!!

I am 28, before 2010 I was a completely normal 24 year old who was loving life and living life. I was on the career ladder, modelled part-time and had a great social life. All I had "wrong" was asthma that was well controlled. It all started when I had a random ring rash all over me in 2010 that dermatologists said was pityriasis rosea and then i had a swollen left knee and pain. The rash looked like lupus or psoriasis, burned like hell and was all over me apart from face and hands. After that it has been a domino effect with my health and things have progessively become worse, I lost my fulltime employment and had to go part-time, all aspects of my life have been affected social, relationships, financial, mental etc. My quality of life has not been good at all and I struggle with a lot of normal "daily activities". My GP surgery is very busy and has about 7000 patients for 3 GP's. The "care" at my GP surgery has worsened over the past year and I have not been managed well or monitored and pretty much just get given pills and told to go away until next time! I am now at the stage that due to my sick leave I am facing termination of employment. I studied hard to get the job I have now (I.T), they have made lots of reasonable adjustments but I just can't manage anymore. I struggle even meeting a friend for an hour or two just for a coffee never mind anything else! I have seen a few specialists, some were great, some not so great! I now feel these days that I am looked upon as a hypochondriac or a malingerer when that is not the case! I want to get on with my life and reach all the "normal" milestones for people my age and start feeling some sort of well being. I will try to explain as full as possible below and keep it short as possible (it is so complex sorry).

-received H1N1 swine flu vaccine in 2009 and didn't feel "right" afterwards

-had a total thyroidectomy for a large goiter in 2013 that was full of abnormal cells, had 1 parathyroid removed too as it had an adenoma and I had high levels of parathyroid hormone.

-diagnosed with fibromyalgia in March 2013 for widespread chronic pain that had been present for over a year

- Asthma, rhinitis, nasal polyps. Skin allergies that have left scarring.

- Also have interstital cystitis & urethral stricture (diagnosed 2012 by urologist) ALWAYS have inflammatory cells in my urine without infection , raynaud's (2012) and asthma (1998)! Never ever got to the bottom of what has caused all my chronic health problems.

- I catch about 6 infections a year or more and ALWAYS need antibiotics. Have been hospitalised twice for infections that went systemic. This has worsened over the past 2 years. Never had any further immunological testing, all immunoglobulins are normal! GP has never investigated any further with regards to my immune system.

-Absorption problems with vitamin D and B12 and swing a lot from being deficient to being normal, despite being prescribed supplements.


Duloxetine 40mg (prescribed by rheumatologist for fibro & depression) was on 60mg but felt like I had complete apathy on 60mg and it wasn't helping my pain.

Amytrtiptaline 50mg (prescribed by rheumy for fibro, to help sleep at night) makes me drowsy but couldn't sleep without it

Pregabalin 300mg - was on this for nearly 3 years, and weaned off this year as I felt it wasn't helping and was too potent to continue taking when it was doing me no good!!!

On various painkillers, baclofen for when my neck gets bad, dihydrocodiene for when my general pain becomes unbearable!

Instillagel and flavoxate with catheter administration tip for bladder issues.

At 28, these symptoms below are scary!

New symptoms that have worsened over the past year:

- SEVERE stiff neck that contorts my head and I cannot turn my head left or right for about 2 weeks then it subsides again

-Fatigue - can be so bad that I am only awake for 3 to 4 hours per day

-Problems with temperature and sometimes sweating profusely then being the complete opposite

-throat "collapsing" sometimes when talking or walking or doing physio, sometimes even when eating

-muscle twitching & spams, in calves, face, hands and feet - docs have witnessed this

-muscle atrophy in neck & lower leg muscles

-general "fibro" pain which hasn't responded well to ANY of the meds I have been given over the past 3 years. Pain interferes with my daily activities, I can only work part-time and struggle even with that. Interferes with my hobbies & social life & love life!

- Since coming off pregabalin I have noticed I have terrible restless legs that start at about 8pm each night, my legs become so heavy to the point where going upstairs can be impossible, my legs will then twitch/fasiculations and a creeping sensation and I can be up for hours dealing with that during the night!! At 28 it is a pretty scary symptom to be having!!

-Numbness on left side of body mainly on head, neck and foot!

It has taken over 20 months to stabilize my TSH and I experienced many swinging period of hyperthyroid & hypothyroid states that were quite extreme. Sometimes I wonder what the long term affect of being hyperthyroid for so long has done to my nerves.

Seen a neurologist a few weeks ago, who was completely obnoxious. Did her assessment of me, said the only thing she was concerned about was the numbness and I had showed her a video of my facial twitching. She said she thought it was "hemifacial spasm". I then asked if this could be linked to the twitching of my legs, hands etc! Hands get so bad sometimes that I drop things and it can be so noticeable that people will say "Gosh your hand is shaking". I had an MRI of my neck and brain with contrast and it showed NOTHING!! which made me feel sick as i thought is this all in my head? Am I going mad??? The neurologist said she felt it was all linked to the "fibromyalgia", however myself and my family are not happy being told this anymore? I also know others with fibro and most of them are over the age of 40 and do not have twitching etc.

My questions and if anybody can answer I would be SO grateful. I do not want to sound like a hypochondriac or a nutter who has been googling symptoms, but lets face it, when you are scared of what is happening to your once normal body, you become desperate?!

I have been tested for rheumatoid arthritis, inflammatory arthritis, lyme disease, syphillis & HIV (yes!!!), normal calcium and magnesium levels, lupus etc etc...........

Things I HAVEN't been tested for that I wonder I MAY have, and what on earth do I say to my GP regarding these without sounding like I am insane/hypochrondriac?........

- Young onset parkinsons? - since MRI etc cannot diagnose this and I have severe restless legs, twitching, throat collapsing etc

- Peripheral neuropathy - obviously have had a lot of endocrine problems that were long standing and wonder if there has been damage done and this could explain all the "neurological" symptoms. Never been tested.

- Underlying kidney problem? - Could I have an underlying kidney problem that could maybe explain the inflammatory/white cells in my urine, without the infection? Also the flares of the interstitial cystitis.

- Possible vasculitis? i.e. Churg Strauss syndrome as this can cause the white cells in urine, asthma, chronic allergies, nasal polyps (Which I have), scarring of skin etc?

Lots of people say fibromyalgia fizzles out or gets better in time - I seem to be getting worse and this has been 4 years of symptoms now? I also don't respond to ANY of the treatments I have been given. I have had acupuncture etc, tried exercise, physio etc etc NOTHING helps.

If any of you have ANY idea what is going on or if you experience something similar please get in touch? I don't want people thinking I am nuts!

4 Replies

I'm sorry to hear of your distress, I know first hand what you are going through as I have had symptoms for the past 27 years.

I was employed until 17 years ago then I went self employed as I was unemployable as if I needed to stop I had to stop. I worked as long as I could but it got to the point when I could not put myself in the position of working when very ill for a week or two to then have a severe relapse causing me to be unable to work then fighting to get well enough to work again for the cycle to repeat itself.

I ended up having treatment for my mental health as I could not accept that my life as I knew it was over. I was suicidal as my whole identity had gone and I did not know how I would carry on. But somehow I did, everyday was taken one at a time and as I could no longer be the person I had trained my whole life to be I had to find the person who I now was. With all the symptoms you have and more I became unable to function physically and have ended up on benefits which I had previously swore never to do because of pride.... And you know compared to the physical and mental pain I am in, suddenly being on benefits was not such a hard pill to swallow and in hind sight I should have gone on them years ago instead of struggling on. My sister helped me apply for benefits and with a vague diagnosis of a Functional Neurological disorder I found it hard to express in words just how bad I felt. However my sisterhood googled it and found the FND hope website. It made very interesting reading as all the small things that were wrong were actually all symptoms of what I was going through but I hadn't told anyone as they would label me as a hypochondriac. Knowledge immediately made me more able to accept the problems as well as begin to accept that this was my lot in life so i could carry on fighting a constant battle I wasn't going to win or I could embrace it and begin to finda new me who I could be proud of.

So please ask your doctor to refer you for some cognitive behavioural therapy to get you on your way. There is still a life for you to live albeit a very different one but nether the less, a life you may come to realise, beyond how you feel now, that you can enjoy.

Now don't get me wrong you will have to accept your symptoms probably will not go and may get worse over time but there is a life for you even though sometimes you will wish the symptoms will magically vanish. There is no fairy godmother who can wave a magic wand But you are strong and I know that because you have asked for help in our online community. Yes the itching and shaking drive you up the wall, the pain is like someone is wringing your legs to dry as they would some washing, your energy will feel drained all of the time. I am currently having to accept that I need a wheelchair a lot of the time and that no one can take the pain away but I am getting there very slowly. Due to my new found status I have practised drawing to keep me occupied and slowly through practice and perseverance I am becoming better and better at being an armature artist. (Unless the shaking is having its own little agenda today! I have also found I am good at baking and gardening and if you knew me before you would be in disbelief as I was by all means of the phrase definitely not a cook or gardener!

My new life has many problems but I have looked for the positives no matter how small and I have found a very different type of happiness despite my health problems. I have still a long way to go in accepting my lot but I am determined to get there even though it will be a long journey. As part of this journey I have invented a new game I play with myself: the smiling game, as smiles are infectious and your smile makes a difference to others and when they smile back you realise you just made them feel better and that's a boost. Eventually you smile more and then start to move on and on your bad days?... Still smile and you will notice that no one notices its a grimace!

Good luck with everything and I hope this has helped. You are not alone in this.


Thank you so much for you lovely words and honestly it just echos everything I feel at the moment. It is also glad to know that you are now in a better place and seem to be enjoying life again which is lovely. I really appreciate your response and I am going to push when I see my GP next week for answers. I will post an update here if I get any further forward.

Thanks again :) Coco


Good Morning, I hear everything you are saying in your letter, and take heart you are not going crazy. You may have something other than FND, not sure on that, as it sounds like you are lacking good ascertive medical care. But you may have FND, as a lot of what you describe sounds like it. As you have said something set this all in motion. Take heart, you are not alone, please hang in there, help could be only a turn away, and even if it doesn't come, let me just say there is life with FND, just different from what we knew.

I have had Dystonia for 17 years and possible FND type symptoms for the past few years. I lived for two full years in a chair unable to do anything for myself including talk. I had dystonic attacks all day long, or pseudo seizures, as some call them. But I am stable most of the time now, still have days I cannot function, but I praise the Lord for all the days I have, the bad only make me appreciate the good more. Keep searching for good medical care. Stay in touch, do not isolate yourself, this thing is hard but it is not all there is to us, we are still us. God Bless, Cathy

1 like

Thanks for your lovely words Cathy. I really appreciate this. I am going to keep pushing for a "proper" and indepth diagnosis.

Kind regards,

Coco x


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