I'm at a juncture now where I'm totally out on a limb.
I've spent the best part of the last 22 months trying to find out what the hell is happening to me, but have come up with precisely nothing. I've recently forked out £750 on a private, 3-area MRI that was completely normal. I was almost 'hoping' for an MS diagnosis to explain the many and varied, near-crippling symptoms I've been having but, for all intents and purposes, I would appear to be the healthiest human being on the planet.
So, my question is this, what sort of symptoms do you have with FND?
I'm here, as somebody directed me to FND and my new NHS GP suggested that, with all of my tests being completely clear (CT, MRI, chest x-rays, gastroscopy, etc. etc. etc.) and neither of us believe I'm suffering with any serious anxiety, we're probably looking at something like what my sister has. i.e. conversion disorder.
Thanks all
Dave T
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DaveT81
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While I'm awaiting somebody to respond to this, I'll just list my fairly comprehensive list of symptoms and you guys can tell me if we share any:
24/7 breathing issues - worse on exertion, can sometimes barely make it up 1 flight of stairs, probably my main issue currently
Brainfog
Dizziness (intermittent)
Vertigo (intermittent)
Tremors in arms and legs
Weakness in arms, legs, chest, abdominal
Poor memory/concentration
Blurry vision
Sensitivity to loud noises and bright lights (intermittent)
Gastro issues/IBS-like symptoms (intolerances to gluten, dairy, wheat that I didn't have), bloating, fullness & discomfort
Occasional issues 'initiating a stream' (peeing)
Terrible tiredness and general lethargy/fatigue
Wake up feeling 'woozy', almost like a hangover
Upper chest/oesophagus often feels 'tight' or 'full', this worsens when sitting for long periods
Often stop breathing as I'm falling asleep
Tingling/itching often in hands, feet and back
There's probably all kinds I've forgotten. But, as stated in my OP - I've literally had every test you can think of. I also suffer atrial fibrillation and was ablated in June 17 - successfully - for that. However, my heart has been 'playing up' a lot over the past few months, as my symptoms have become worse.
I had an MRI of brain, cervical and thoracic spine and the results came back as 'all clear' last night. Myself and my fam had started leaning towards MS, but this would now suggest some form of neurological disorder, rather than a degenerative 'disease'. Also, I was under a private Dr for more than 6 months who was absolutely convinced I was suffering with more than one autoimmune disorder but could never pin me down, and none of the treatments we tried worked.
Any thoughts? I've seen a general medicine Dr recently, as most of my medical specialists are now stumped, and he's thinking chronic fatigue for some of my symptoms but can't explain the breathing/gastro issues.
My NHS GP asked what I was thinking it may be and I said my sister was diagnosed with a conversion disorder 3-4 years ago, and I believe it may be something along those lines. He agreed, but obviously.. no definitive diagnosis yet.
Through a process of, very lengthy, elimination I've arrived at the FND message boards!
My husband Mike has most of the same symptoms as you.
Fatigue, brain fog , great problems with his breathing, chronic fatigue, great problems walking, let alone trying to climb stairs.
He hasn't had any tests like you have had, however he has been told a while ago he was over breathing.
He saw a lady who helped 're learn to breath. He's seeing a Neuro physio who at the moment is trying help him, as he has a tendency to pause his breathing, but he doesn't realize he's doing it.
He had to give up work in Dec 2017.
This has been so hard for him, as he is a intelligent man who worked hard and was very contentious . He's only 59.
This all started late 2013 onwards .
We believe it's been caused stress, anxiety and worry . He never was able to tell me how he felt at the time, which unfortunately alot of men are like. We believe is brain is out of sync with all the natural movements we take for granted, hence why all your procedures have come back normal.
I feel for you I really do, my poor husband suffers so much, most people don't understand, and now he gets quite anxious if he has to go to new places, he worries that he won't be able to park close to where he's going. He relies on his mobility scooter and he does still enjoy driving. Although now we have an automatic, which is better for him.
Check with your doc, about breathing In intervention, as actually alot of us don't breath correctly. It's amazing how we can mess up our bodies by breathing in correctly.
I hope this helps a bit .
Unfortunately many docs don't understand this condition enough.
Hi. DAVE, I am sorry about your struggles, I know how if feels, have been there and still am. My symptoms are bad back, muscle twitches, burning sensations etc. Have done all blood tests, mri, all came back normal. 2 weeks ago I have got diagnosed with fnd, was told to look up online for more info, nothing else, no medicine, no treatment, nothing. Have been left to deal with it on my own...
That is absolutely terrible Agnes. It's amazing that these sorts of disorders are so poorly dealt with in this day of scientific miracles.
My wife suffers with chronic fatigue, hypermobility, fibromyalgia (amongst other things), and she's been left to her own devices since she was 12. I'm always pushing her to investigate any new treatments, even clinical trials but she's just learned to cope.
I certainly don't want to have to learn 'to cope' with this. I'm 37, symptoms began when I was 35 and I feel about 90.
I had 4 months off work from September-February this year but I am almost certain I will have to go off sick again. Feel like I'm getting there, in terms of diagnosis, but it's been so slow.
My brief Google on the topic has shown me that this disorder appears to be much better treated in the US than in the UK. All of the specialists in this area appear to be based, either in London or in Edinburgh. Typical that we'd be so behind!
So your sister has conversion disorder. FND must be genetic. There needs to be DNA cellular research on this disorder. I have had stroke like symptoms, drooping face, blurry vision, eyes do not align, ringing in ears, dizziness, heavy pressure on my head and chest, weakness that feels like a mind body drain, felt like I was going to pass out while walking, need a cane to walk and cannot walk far, twitching, temporary paralysis, tuning fork like vibrations throughout my limbs, tremors, numbness, body feels like I am half a person, pins and needles, slurred and stuttering speech, trouble finding words, memory loss, cramping, muscle tightness in face neck and limbs, jerks before falling asleep, having to catch my breath and remind myself to breathe, sleeping problems, face and legs sometimes swell, feeling of fullness and pressure in my stomach when I start eating, trouble swallowing, panic attack like symptoms that come on suddenly feeling overwhelmed. And others have it worse. Have had many tests done and they are normal. My primary doctor and all specialists said they don’t know what it is, I can’t help you. But finally found a neurologist who said it’s FND, it’s a pretty generic term, is that what they diagnose us with because they don’t have the answers, but something is clearly wrong?
Ajastar, really appreciate your response - I'm amazed at how many similarities our symptoms have. Particularly the 'tuning fork like vibrations throughout my limbs, tremors, numbness, body feels like I am half a person, pins and needles, slurred and stuttering speech, trouble finding words, memory loss' part, and the bit about feeling like you have to remind yourself to breathe at night. That is terrifying but I've sadly become used to it.
All of my Drs have so far failed to mention anything like this but my new NHS GP has said we're probably heading down the neuro disorder route, as the 2 MRIs I've had have shown nothing so I'm just hoping I can speed this up to at least get a diagnosis.
My sister's conversion disorder took almost 4 years to diagnose but she's currently in the best state she's been in in about 8 years. She gets about, is going on holiday, etc. She had a very bad attack, they thought she was having a stroke, she lost the use of her arm and could barely walk. Was being pushed about in wheelchair, using crutches, a zimmerframe, etc.
So, I guess there's hope. It just doesn't feel like it right now. I'm sure you know how that feels all too well? What, if any, 'treatment' are you having?
That’s good news your sister feels better and can get around. What worked for her? As for me, physical therapy has helped with the draining weakness I would feel, before holding up my phone would be too much, it’s better now even though it still creeps back when I overdo it. It also helped my dizziness, even though I still get it is not as bad as before. I had a sleep test and I have mild sleep apnea but I can’t use the machine, feels like I’m suffocating. I am planning to see a psychiatrist next see if that helps. My neuro prescribes cymbalta but my insurance denied it so I’m not taking anything. Heard bad things about cymbalta so I don’t know if I want to try it. Resting helps and distracting yourself, I watch movies, spend time with family, go outside and smell the fresh air but you have to take breaks. What did your sis do to get better?
Yeah, I'm at a point now where I just want a diagnosis - and a definitive one - so I can start looking into what can be done.
I cancelled a big holiday last year, and we re-booked for June 19. It's now just over 2 months away and it's looking like we'll have to cancel once again. I simply can't function at a level to go on a 2 week holiday, sandwiched by 8 hour flights either side.
And with my being from the UK, the NHS is currently being systematically crippled by our govt. meaning waiting times are huge, meaning I've spent almost 10k on private health care (that I've had to borrow from my mum) just to get investigations done. That alone has taken almost 2 years, but I'd probably still be waiting for the first specialist appointment or MRI scan if I hadn't done that late last year.
I've tried all kinds of things but it's hard to do anything really when you don't know what it is you have. I worry that anything I may do will make things worse. I returned to work almost 2 months ago but I've actually had to call off sick today and stay home. I've struggled being back full-time but this last 7 days has been hell.
As for my sister, she was practically bed or wheelchair bound for a long, long time. When she finally got her diagnosis, it took her a while but she gradually started using a cross-trainer at home. She started forcing herself out more, using crutches, etc.
Luckily for her, one day, whilst out in her garden (she also gardened loads), she was lying down when she suddenly got the feeling back in her arm and over the next few weeks it sort of.. 'spontaneously' came back and she was able to use it again. Over the next few years, bit by bit, she's got to a point where she can live a relatively normal life but has never gone back to work. The most she does now is volunteer a day a week. She 40, I'm 37. Not sure of anybody else's ages but life seems pretty unfair when this happens to you.
Find a neurologist that will give you the diagnosis of FND since it’s likely that’s what you have, so you can get the prescription for physical therapy. As for working, if it’s possible, try to claim disability or quit. You need to rest. As for the holiday, it sounds like it might be too much for you too. Reading about your sister, sounded like her body wanted a rest so badly it kept her in bed for a long time, then while gardening (which is relaxing) her body said “ok, I got all the rest I needed, so I’ll let you function a bit more” So I suggest you rest as much as you can, but try to walk some everyday to keep legs strong and find a hobby that relaxes you, distracts you and doesn’t put much strain on your body. I wish I could relax but I have two kids and I don’t have help from family so I continue to push my body which is why I’m not getting better. I’m 41 by the way but look younger lol
I've had to take the past couple of days off work. Went in early today to be on a call and finish a few things but decided I need tomorrow off and will try again on Monday.
Also, my next general medicine app was cancelled and I've ended up with it being in May now, rather than a couple of weeks. Doesn't seem much, but after suffering for so long every second counts. Will definitely need action soon..
Your post sounds all too familiar... in simplest terms my brain forgot how to breathe for nearly 2 years and so unable to even hang washing up easily. I had a brilliant respiratory specialist who really tried but after paralysis and other symptoms I was diagnosed with FND. I have to remember belly breathing to take the pressure from my chest but I found when I came out of hospital learning to walk and catch a ball my rehab team was so important. I had. Speech therapist for the stuttering etc and physio for my movement including brain focus as still struggle with noise lights etc. my OT was really helpful with memory exercises as short term memory loss and she helped with coping techniques for going shopping etc. rehab sadly was a once off not to be repeated deal as Australia still behind with government understanding ( free help but to pay when you had to stop working is a big financial stress) but I see a psychologist to also help with triggers and stress relief as this is my main trigger. I have had to learn on my own how to deal with hand tremors which I did get rid of... but the tic/shakes whatever you call it, I cannot stop. Long winded reply but to give hope I am back at work only 15 hours as all I can manage without exacerbating symptoms and the rest of the time I relax to be able to go to work. I need to work as feel depression would get the better of me otherwise. Thankfully my work and the clients all know what I’ve been through so are very understanding which from what I read is rare..
all the best in your journey and I hope you can access the help you need.
Yeah, I can empathise with that. I often feel like my brain is 'forgetting' how to breathe too.
Particularly at night, it's almost like it just switches off. But sometimes during the day, when it's at its worst, I feel like an automatic function becomes something I have to consciously do.
It's good that you're at least at some level of improvement now and can even work for 15 hours a week.
I had 4 months off from work 'sick' and, lucky for me, I work for the NHS who have some of the best sickness policies (although that's likely to change soon!) and I had 4 months off at full pay. I made myself go back on a gradual return but returned to full-time 3 weeks ago. It has seriously kicked the stuffing out of me. I have now had to finally call in sick again today.
My manager is understanding and we've worked together for over 6 years, so she knows I'm not a shirker or 'skiver' as we call it but it doesn't stop the guilt of having to be off again. Not sure what to do from here, other than wait for latest blood results and return clinic appointment to see if I can get referred to somebody that can confirm my suspicions that this is probably FND. Considering my sister's conversion disorder, it almost certainly is..
Hoping you do get a diagnosis soon. One thing that my psychologist brought to my attention and I do know everyone is different but like you I had 4 months off and he advised because of my situation that 15 hours each week was more than enough for me at present. He explained the importance of only introducing activities slowly such as the days I work I don’t do much else and have rest sessions between doing things. Like being a kid again where you need rest breaks or you get cranky 😉. I tried introducing aqua (as my weight has ballooned) on my day off but found this exasperated my shakes and made me useless for the rest of the day with heaps of disassociation. He had a point!!!
May not apply to all but something that might be worth considering for those just diagnosed- we can no longer push ourselves like we used to
As far as any vitamins, I don't think she did. But she definitely had some meds for anxiety or something along the way. Don't think she takes anything at the moment but she does still have rough moments now and again.
Do you think you’ll try some meds for anxiety to see if it helps you? I’m having problems with my insurance regarding those meds. I think I’m gonna need some because I’m having a bad couple of days which I’m not handling too well. I’m waiting for this wave to end. I’m sorry to hear that she still gets some symptoms.
I actually went to my old NHS doctor back in December, practically begging him to start me on some because it was coming up to the holidays and I knew my mood would drag my family down. I wanted them to enjoy it and myself, as much as possible.
He had me fill in a 'quiz' to show my levels of anxiety. I wasn't hugely anxious at that time, just down and angry but I slightly exaggerated my answers (work in a hospital so I know how it works!) so I was just over the required total to require a low dose of meds.
He gave me a low dose of fluoxetine (or Prozac). I lasted on it for about 10 days before I had to speak with him and he advised I stop.
You see, I have atrial fibrillation too. I had an ablation for it back in 06.17 but the meds really irritated my heart and were giving me weird sensations in my chest and palpitations.
The sad thing is, I had actually started to feel more up-beat whilst I was on them. He's an awful GP though, so I switched my doctors and the one I currently have seems much better. Once I've gone through my next appointment with GM, I'm considering relenting re: starting meds again and work with him to see if he can start me on something that doesn't interact with heart-rhythm conditions.
Sorry, long story to answer your question: yes, I'd definitely consider it if the side-effects didn't influence my heart rhythm disorder.
How about you, are you on/would you consider any meds for anxiety? From what I've read, people are often start on anxiety/anti-psychotic meds because FND and similar conditions are often considered to be affected by chemical imbalances in the brain, and the meds can often adjust this and help FND and any anxiety or depression people are suffering at the same time. Would be a win-win.
My heart rhythm sometimes gets abnormal too, the cardiologist says I get PVCs. Now I’m hesitant to take meds because I hate when my rhythm gets out of whack. It’s always something isn’t it, but if I don’t feel at least a little better in a couple months I might just try it.
Hi Dave, so sorry to hear you’re suffering like this. Welcome to the shitty club.
It certainly sounds like FND. At least, your symptoms match those suggested of FND. I get the impression that your symptoms are very changeable, erratic & unpredictable, and the fact that you’re sure there’s more than you listed tells me that you’ve experienced heaps of different sensations and issues, much like myself.
I was diagnosed with FND in February and have another neurologist appointment coming up in June for a second opinion, with Dr Mark Edwards team @ St George’s in Tooting. However I don’t hold much hope for it.
Over the past couple months I decided to take my health into my own hands and do a lot of research. I’ve been following the Medical Medium protocol and have made tremendous progress. It may only be temporary, it may be up and down - we are living with something that is very unpredictable here, and I don’t know about you, but I’m willing to do whatever it takes to get myself back from this horrible disorder.
I really recommend purchasing Medical Medium’s book about chronic and mysterious illness. He covers healing the neurological system and as I’ve said, I’m benefitting.
I’m going to do a post here soon detailing my progress in hopes it may help somebody else. There’s no promises. I’m also certainly not a doctor and have zero medical experience. However I’ve lost a lot of faith in our medical communities these past few months and have no intention on relying on them again.
I’m sending you love. You can make it through this, don’t lose hope. Back in January specifically, I had no idea how I was going to continue to live. I felt like life as I knew it was over and I was never going to recover. I feel very differently now. Perhaps it sounds silly, but treat yourself lovingly. Be gentle and kind to your body. Recognise that our bodies don’t want to hurt us and that they do their best to keep us functioning at an optimum level. Maintaining a positive relationship with my body has really helped me to not get depressed during the harder times, when I felt it was malfunctioning and out to get me. Getting sick makes you feel so disconnected, but my experiences as of late have given me a lot of hope. Take care.
I've been at that point where I feel like my 'old life' is over. At 37 that is something particularly hard to take, when 10 months earlier I was training for a 5K and feeling great.
I've not heard of the Medical Medium but I really am at that stage now - if somebody told me to inject smack into my nostrils at this point, I'd give it a bloody good shot.
I will certainly look the book up and see what it's about. I'm happy to give anything a try, and I certainly have tried many things.
At one point I, in desperation, went to see a private GP and immediately diagnosed me with autoimmune disorders. He was so keen to help but after 7-8 months he still couldn't pin me down to one or more disorders and none of the test or blood results backed up his ideas. That's what brought me back to the NHS.
I'm hoping my next GM appointment in a few weeks bears fruit, but I feel they're just going to refer me to the chronic fatigue team. I think it'll end up with me asking for a referral to a new neurologist.
Hi Dave, sorry I know I'm coming to this conversation late. I saw a neurologist for the first time 3 weeks ago. 2 days ago I received a letter saying I have Functional Neurological disorder, in particular a functional movement disorder but i have lots of other symptoms too including fibromyalgia and chronic fatigue syndrome. Not sure if you've come across it but he sent me a website address which has some good info, might be worth you checking out if you havent seen it already. Its called neurosymptoms.org
If you go to the menu you'll see many of the symptoms you describe are listed. Unfortunately I'm finding there's very little help available. The letter just said I should tell the pain clinic so they can refer me to a psychologist but that's it. He's already discharged me from neurology so I can't even ask questions about my diagnosis, which came after one 15min appointment, no tests. I really hope you get a diagnosis. It's so hard when you're health deteriorates but no one can tell you why. Best of luck
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lol
Vertigo and dizziness-Eply maneuver? What helps symptoms?
FND What do i do when it comes on
How long have you had symptoms?
