Hi there,
Quick question. Does anybody get better with FND or is it a long term condition? My daughter is newly diagnosed with this and having read into various case studies it looks to be long term and depressing. I don’t know how much information to feed her just now as the outlook looks very bleak and I am trying to keep her positive.
Thank you in advance for any help and advice.
I'm new to this as well. I just got diagnosed last month at age twrnty-six. I've done a lot of research since and it seems it can get better but it dosent usually completely go away. Good luck to your daughter. We're on this path together!
Hello there Helen.
Here is my story: I fell suddenly ill aged 40 and went from being busy career mum to bedridden invalid overnight. I was originally diagnosed with ME, the FND label came about 3 years later, after some inpatient therapy with Prof Edwards team in London, trying to address my robotic and spastic walking. As well as very poor walking I also had severe fatigue, unexplained seizures, severe headaches, generalised pain, emotional lability, and cognitive dysfunction including memory problems and word finding difficulty. I lost my job, had to downsize to a smaller house and it seemed that although symptoms waxed and waned they were here to stay.
During the first 6 years of illness I attended an ME rehab course, ongoing psychotherapy, neuro-physiotherapy, hydrotherapy, as well as that week long inpatient stay. I volunteered as a patient for a clinical trial looking at ME. I rigorously monitored everything I did, tried every diet I could think of...but apart from one inexplicable 4 month window of remission in 2013 (which came and went as suddenly as the original symptoms had) I was generally struggling physically on most days. Some much worse than others. Sometimes it seemed to come in waves and any progress made would be washed away.
In 2015 whilst investigating another potential cause (another dead end as it turned out) they discovered an aneurysm in my brain. Boy was I annoyed - as if I didn't have quite enough on my plate! Even more so when they explained this was entirely coincidental and not in any way symptomatic. It meant that I had to prepare for brain surgery, which I did by pulling right back from everything and focussing on getting well enough to have a chance of coping with that. By the time the procedure came about in June 2016 my symptoms had already calmed significantly. I rested solidly for 2 months afterwards - spent a month back in bed - and paced my return to activity very, very carefully. This was the most carefully staged convalescence since my illness first occurred.
I really can't say what has happened here: have I gone into a natural remission (people with ME do, sometimes for years) and this has taken the load off my poor brain and brought its natural walking pattern back? Did the resting take the pressure off (one suggestion as an inpatient was simply not to walk at all if I wasn't walking in a natural pattern, so as not to reinforce the pattern that was leading to involuntary jerks and uncontrolled movements)? Did the focus on pulling everything back to its bare minimum, plus the need to focus on dealing with a potentially imminent threat to life, have a positive psychological effect, winding my bodies 'flight or fight' stress response back in, calming all the parasympathetic nervous systems as I came to terms with the fact that even a dramatically impacted life was preferable to no life at all?...as I say I really can't say what it is that has changed because it could be all/any/ none of the above.
But since probably the beginning of 2017 my symptoms have improved. Gradually the bad days have become less and less. Eventually it was more that the symptoms came in occasional 'flares' with runs of good days in between. Then the flares got fewer, and could be counteracted by immediate resting and put into reverse within about 48 hours. I think my last flare was in February. I cancelled my meetings, got my mobility scooter out for a few days and soon was back on my feet.
I still watch and pace really carefully - I spent 3 days at a conference this week and I have to take myself off during coffee breaks, find a quiet spot for 20 minutes. I didn't join in with the evening socialising. On the way home there were telltale signs of heavy limbs, cloddy feet, a heavy weariness. I rested for the next couple of days with a clear diary. I am not the 110-mile an hour woman I was once, by any stretch of the imagination. But I prefer this slower, gentler, carefully balancing me.
I make a concerted effort to spent quiet time resting at points in every day (for me that is easy, it has become my daily routine, besides which having come to faith when I was still very poorly, I've got to the point where I have been training part-time for the last 2 years to become a vicar, so taking time out all the way through the day to stop and pray is a pretty good thing on all sorts of fronts!). I am conscious that I am not so much 'cured' as 'in remission' and 'managing it very well' - even though I am not sure I could say with any degree of certainty what this 'it' that I am managing better now might be. I think I have come to recognise that there is an inbuilt frailty there now in my body system - any overload of stress, be it physical, mental or emotional, can start to send things awry and we all notice the symptoms: increasing forgetfulness, heavy limbs, suddenly hitting 'the wall', a rising feeling of panic when confronted with a minor problem, stressy mum/wife appears on the scene. These are all signs that I am tipping back into 'flight or fight' and my body is going into that tense, spastic high alert that ties me up in knots. I work hard to breathe all that deeply away - for me that is about taking things to God and leaving them with him, and also being aware of my wider place as just a tiny part of creation who cannot change everything. And so just breathe...this is what works for me. I am sure others could rationalise it differently.
I suppose in summary what I want to say is yes, it can get better. I don't think there is a quick fix or an obvious route. I am not even sure all these medics really have a clue. There is something in it about taking the pressure off, the foot off the gas with regard to the 'recovery' thing - accepting that this may be a permanent faultline, what has to be done is a re-orienting of life so that you don't fall down it all the time. I was led to look upwards and outwards from myself and my little me-centric world, and in time that seemed to help. I don't consider it a miracle cure, more a re-directing of my path, indeed my whole life and, in retrospect, I am most grateful for it, even including the brainbomb aneurysm which, in the end, it seems they were not able to do anything about after all. Each day is indeed a gift, in the light of living with that...
I hold you and your daughter in my prayers this morning, Helen, wishing you a strong hope and encouragement for a bright future, and that she finds the way to set her life on a different plane and towards a 'well-managed' condition, whatever that means for her. Your love and support will guide her. And I am sure that she will in time find the path that will bring her to a new way to improved health - if she wanders gently along it. Blessings x
Hi, I'm new to this site and I was diagnosed a year ago. When I was first diagnosed I found it very scary and hard to understand as no Drs would discuss with me if I would get better, no one would even take me seriously. My GP still thinks it is all in my head and a family memeber is a GP and she hasn't even discussed it with me, I think she feels it is a weakness! Ok so this is the negativity we face being diagnosed with a medical condition which is simply not understood yet. I have done so much research about it, I went onto blogs and had to come off as I found them very negative. I think this site is fantastic! Ok so here is my story. I hit my head under the stairs cupboard 3 years ago and this triggered a lot of daily migraines and difficulty walking. I wasn't believed by anyone so I just went on at 100 miles an hour when I was well and I increasingly got worse until in June last year my legs started giving way and I had difficulty walking and had a ridiculous gait, looked like I was giving birth to an elephant. I had terrible shakes/tremors down the right hand side of my body....this went on until I finally was rushed to hospital twice with suspected stroke where I was treated appallingly by the doctors who thought I was a time waster even though I couldn't talk properly or walk and my body was convulsing! The first time I was in hospital I had a terrible episode an non epileptic seizure I think they call it and I had this nurse who started off being really calm and nice to me until all the test results came back negative. She then yanked out the oxygen and shouted in my face there is NOTHING WRONG WITH YOU OPEN YOUR EYES, and then walked out leaving my curtains open and myself exposed to lots of patients, I could not move, speak I was frozen it was so humiliating and scary as I didn't know what was happening. Luckily I am not scared of the medical profession as I used to be a medical rep, something I'm not proud of, but once I was better I asked he nurse why she had done that? Did she know what was wrong with me? All the doctors I faced were hideous to be honest but that nurse was the worst, I could probably write forever about the experience I had but I bet everyone has the same sort of stories. So I will move on...we left the hospital with no diagnoses I had another episode the following day where my husband and I were so frightened, I look after our daughter who is 9 as my husband works such long hours i have to be ok to look after her after school. The way I was couldn't do anything, my husband phoned our local dr surgery and explained the situation with them and the emergency dr called back and said he refused to see me and to call 999. My poor husband then told me this and I refused to go to hospital again. I got worse we felt so lost, all we wanted was reassurance from a doctor. Then I remembered there are private gps, ridiculous as it is we paid £150 to go and see a dr just to speak to someone but I was here 4 minutes and had an attack and she called an ambulance anyway!...ok so you can imagine the rest and it was even worse..... what I want to say is I am now ok, I'm having good and bad days but I honestly believe being able to rest is the best thing, I know I am very very luck as I don't work, pacing is so important. My life has changed completely I can't go at 100 miles an hour, I have to plan my days but I am making huge progress. I get very tired. I do think that if you try and stay positive that is a massive help. I'm afraid I'm quite naughty and when my speech went I found swearing made me laugh and when I laughed it relaxed me and I got better quicker. I really hope your daughter improves and I think if you keep her positive and rest rest rest although it is so so boring it will help her, my cousin was diagnosed with ms 25 years ago and recently got rediagnosed with fnd and he has gone from being in a wheel chair to golfing but he said that he slowly got fit by using an exercise bike for 5 mins a day...you have to find what is best for you and your daughter. For me I am finding Chinese medicine is really helping me, I am getting aqupuncture and I have seen a massive difference in me but I know I will never be the old me but I can be a slower more calm version and I like that one actually. The problem is I can't afford to get aqupuncture forever so don't know what the answer really is. But I do think being kind to yourself and relaxing is a good place to start and meditating. Good luck
Hi, I too wonder this, I have read of people becoming better but have also read others have tried to go back to work, have a holiday and have ended up worse then they were as the symptoms can change or become worse. That is a frightening thought. After 3 years my symptoms have eased and a lot have disappeared for which I’m extremely grateful but the symptoms I’m left with are still life changing. Every time I try to do too much my symptoms return with a vengeance, it’s extremely hard to try to progress but not overdo it. My life has definitely improved this year but I guess I was hoping for more. When I look back which I don’t very often I have improved tremendously but there is always the hope of being nearer to how I was before FND, maybe I’m hoping too much but I think you need hope to keep trying to improve. Wishing you and your daughter all the best.
Hi,
I'm five years in and I've decided that I'd do what Prof Edwards recommends and optimise everything. There is no panacea unfortunately and although you can improve all improvement may all go away as soon as you start to over do things and you can get much worse rather quickly. It takes a lot of getting your head around - and to stop thinking that your efforts will get you well. Listen to the Prof.
It is recommended that you have vitamin D and B12 over 500. Getting your GP to monitor these is like banging your head against a brick wall - have a go then at least you know you've tried. There are oral sprays for both these vitamins that deliver vitamins into your blood without bothering if your gut is absorbing them - keep them in the fridge, especially in the heatwave they can loose effectiveness towards the end of the bottle.
I take vitamin B6 as well as the full range of B vitamins after reading a good argument about them - though more research needs to be done in this area. They are a complex and work together, taking more of one can reduce another. B6 helps me a lot, but that could just be me. B6 deficiency is more common in people with thyroid anti-bodies as well as the B12 issues it causes too. I'd had a fit a year before my FND started maybe it was B6, I'll never know for sure. B6 deficiency is also common in people with chronic fatigue syndrome.
I take vitamin D even when I do get sunlight. Get some sunlight - it helps to make serotonin as well as help regulate sleep. You have serotonin in your body as well as your brain which if lacking can contribute to stiffness.
Sleep is important and there is no overnight cure for this one. GP can refer you for CBT which is the most effective for insomnia. If you can't get out of the house then there are websites to give advice.
Even if it seems rather minor health problem correct it. Migraine is common and can contribute and you don't have to have a headache as one of the symptoms, so think about what you can do and ask the right people - like your neurologist.
Keep your bowels regular. It's best to do it with a healthy diet. If you really struggle try the All-bran malt loaf recipe from their website, just halve the sugar it's really sweet. Constipation can cause other issues and make you more prone to urinary infections.
Get your flu vaccine every year and get it as soon as it becomes available. Flu can set you back a lot. Keep away from those "brave" souls who soldier on when they have a cold. Infections can cause low mood as well as problems moving. Infection and inflammation cause the tight cells at the blood brain barrier to close up and reduces some of the brains resources. It's why everyone feels rough when we have infections. Not just in FND it's just worse for us.
Here's the bit you won't like. Rest, rest and more rest. Keep well in the 75%. Listen to your body as 75% changes not only on a daily basis but sometimes hour by hour. Doing absolutely nothing though is not helpful unless you've got an infection or just can't get out of bed. PMT and being on your period will also worsen symptoms. Try your best to work around this and try not to chew heads off. As tempting as it is.
Hot weather will be adversely affection your symptoms. Keep cool and hydrated. I'm typing this with my feet in a bowl of cold water with a fan on me. Having the bath too hot will worsen symptoms temporarily too.
Be creative. Read. Do puzzles even though you've brain fog. It's distraction. It's difficult when handed the gordian knot that is FND and you can think about it too much. You can't ignore it most of the time it's that buzzing in your ears disrupting your thoughts - puzzles help. I particularly like a logical problems as they completely absorb my attention. Even if I get them wrong - which is a lot. Don't be hard on yourself. It's more important to distract yourself than to get it right.
Remember you are not alone in all this. Stay away from friends who don't understand, who lower your mood, try to get you to do things that don't help or make you worse. Nurture the few who are understanding and lift you up.
Stay away from the tin foil hat brigade. Read "scholarly" articles and those from sites that can be relied on. Even I realise the things that have helped me may not always help someone else. Listen to yourself - but not the person who remembers what you could do in the past. That's beating yourself up for no good reason. Nothing works overnight - unfortunately.
If you are still reading, I hope this helps. It can be soul destroying as I know only too well. When someone wants to ask you what's wrong and they've never heard of FND or have and just don't get it - that's their problem. Trouble is that can be your GP. Find a GP who at least tries to understand and stick to that one. My list of people I won't discuss my FND with is LONG.
Optimising has helped me. Not cured, but offered me hope and some quality of life. Remember some people get better, but if your not one of those you've not done anything "wrong". It's the throw of the dice.
Take care xx
I am a mother of a 25 yr old who unfortunately fits perfectly into your well written profile of this horrendous rollercoaster disease
I will reinforce “optimize” whenever possible, we find scrabble and card games with special holders also good.
Any suggestions about socializing?
My 25 yr was diagnosed 2 yrs ago but not sure there wasn’t symptoms throughout her life
This is a most debilitating frustrated horrendous disease
Keeping moral up seems to be the most important part and trial and error with all doctor suggestions is a good idea
It is not just my daughter but the whole family gets to suffer
Morale and maybe family counselling are my suggestions
Best piece of advice for a newly diagnosed 
Newly diagnosed 
Newly diagnosed 
Newly diagnosed 
