Did anyone get fnd and then get better within months?
I seem to be better this last couple of weeks. Its happened before when I experimented with doing nothing.
This time, I am reservedly thinking I might be ok now. Is it possible without treatment? Or am I going to have a relapse?
My symptoms were wobbly walking. Unable to walk without assistance. I even bought crutches to get to work and do the shopping.
Please note that my symptoms were intermittent and got worse with exercise at the time.
But this last fortnight seems to be ok. Walks on the beach and more.
Is it ok to think I am ok now?
Excited, but warey
Please let me know if this happened to you. And the long term outcome.
Thanks,
Jaz .
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Jazymay
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Well for me Ive always have trying to investigate what helps me and what doesn't help. I have had 6 days without incident and some small symptoms. Then it came back.
When it came back of course I was upset and sad that it came back. Then later in time ive had spells of "good" days and "bad" days. I think its awesome you havent had anything going on with you. I got a walker for the house sometimes too and havent had to use it in 3 weeks. But I still have trouble walking myself.
Just take it easy and be happy. If it comes back (hopefully not) don't beat yourself up. I said to my wife that's why its called FND HOPE not FND CELEBRATE lol.
Im right now in a pleasant state of mind and yet had problems today so please enjoy your time and take it moment by moment.
My problems occur when my mind is at rest along with my body. When I work on vehicles at work (im a mechanic) im fine with little ticks and speech problems. But when I get off work and sit down then my problems blow up.
Yes, thats interesting about being better at work. I am much better at work most of the time. And yes, I still have background symptoms, but I have walked my dog about 5 km yesterday, and still feel ok.
I think the unpredictability is one of the hardest things for me, and it does make me feel that i look like a fake to other people. Even though i have explained to work that it comes and goes. I havent taken any further time off work, since i was discharged from hospital. AND no one has said anything judgemental at all, they have all been supportive and shocked at what happened to me. I have been so lucky.
For some reason, i find that bending my back seems to cause my legs to get wobbly. You know, like cleaning the bath, hanging out the washing. How that works, i am not sure. And my arms are affected if i do things that area strenuous on them, like mowing the grass and gardening.
But, to be honest, right now i feel like blow it! i can do those things if i want to, and deal with the consequences by making sure i do them on days that dont matter. And i can be messy and not do jobs if i want to stay better too. What does it really matter in the scheme of things????
I have had what was diagnosed as FND (I dislike the term for a number of reasons) for 13 years. I've had numerous symptoms, including gait problems, involuntary movements which may be tics, cognitive difficulties, fatigue, feeling constantly unwell, etc. All of which got worse with exercise. My gait was so bad I used a mobility scooter to get around and a walking stick for very short distances. The muscles in my legs would stiffen up after a few steps.
I have had times when I thought I was recovering only to go down hill again. The longest lasted for 6 weeks. I wasn't completely symptom free during these times, but my gait became normal and my cognitive problems improved dramatically. I always felt really disappointed when my symptoms returned.
Then last July I went into recovery again. There are reasons for this, but I will need to write a much longer post to explain. I have continued to recover since then. My gait is now normal. I've gone from struggling to walk 20 metres, to walking my dog about 2 miles in the morning and a mile in the afternoon, plus I walk the mile and a half round trip to my local town centre and shops most days of the week. I've also been able to do some voluntary work. I started by working 3 hours a week, and I'm now doing 20 hours and have stopped claiming a benefit called PIP. I am now in the process of finding paid work, which could be challenging as I haven't worked for 13 years and I'm now 59 years old.
I'm not completely symptom free. I still get involuntary movements, particularly when I'm tired, and also cognitive difficulties if tired or under pressure. I would say I'm about 80% recovered, but I hope that given enough time I will make a full recovery.
I need to make a longer post at some point, although I have to stress that what seems to have worked for me may not work for others. But a quick overview would be:
a) Understanding the effects anxiety and stress has on my body ( I had never thought I was anxious, I thought everyone felt the same way)
b) The significance of my joint hypermobility (EDS)
c) Seeing neuro-physiotherapist who got me on a exercise trampoline/trampet which reminded my brain of the natural bounce my gait should have.
d) Learning about neuroplasticity, which for me provided a better model to understand what went wrong in my brain than the current 'software problem' model promoted by some neurologists and which I found really unhelpful. Software is hardware when we talk about the brain as it involves changes in neural pathways.
I will try and write a more detailed account at some point if it would be helpful. I've held off doing so as I'm conscious that I'm not completely recovered and also I don't want people to think it will work for everyone.
I think most people understand that we are all different and our recoveries are different etc. It would be a fantastic resource to use and try out, if you dont mind spending the time writing a long post. You can always point out that it is what worked for you and might not work for everyone.
I am really pleased to hear you are getting soooo much better! I havent read as much info on here about specifics like yours.
Thank you so much for your reply, it gives me so much hope that i can get better, that there are things I can do etc. (what a good excuse to get a trampoline to play on!)
I will write something more in-depth when I have a hour or two to spare, Jazymay. There are links to websites and books that I want to include that may be of help to some people.
I'm sorry to say that all my hopes of recovery have been dashed. I am now back to square one. After 5 months of being virtually back to normal, I started to get press/altered sensation down the right side of my face. This is how my illness started. I used to get it regularly, but I haven't had it since I started to recover last July. But it started again on Sunday afternoon, by yesterday evening it felt worse than it's ever been. Then this morning I was walking to a voluntary job I've been doing since October when my gait went. I tried to get it back, trying to remember the natural bounce we when we walk as I described in my earlier post, but it didn't work. My gait has just got worse. I'm now back to where I was this time last year.
So I won't be writing anything about how I've recovered because I unfortunately I haven't. I need to now reassess where I am. I'm sorry if I got anyone's hope up.
I am so, so sorry. I cannot imagine how you must be feeling. I hope this is a minor set back, not a return to a year ago.
My symptoms also came back suddenly on the weekend, also as bad as they were in the begining, but they are easing up already. I hope you get the same relief.
I wish I could do more, but my thoughts are with you.
That sounds really positive. My sister did, she had serious balance issues, slurred speech and got worse before she got better. Her mental health really suffered and she had an episode of psychosis.
However she did improve after a couple of months although I do have to say, she started on anti anxiety meds and this made all the difference. She was really unwell in June but back to work as a nurse in October phasing in to full time again in December.
She is prone to migraines and has to be careful as she has had wobbly moments if she gets anxious. She can’t do night shifts as this seems to make her unwell, but touch wood things are going well for her.
I agree, she did say she has never felt so well being on that medication and hadn’t realised the extent of her crippling anxiety for the last decade. I wouldn’t go as far as saying she is cured - I definitely think there is a risk of it happening again as she was prone to fainting before the serious episode. She knows she needs to take care of herself and say no to things when she needs to, but I have seen a much happier and more positive person in the last few months compared with the last few years.
Look after yourself, keep an eye on your triggers and do say no when you are feeling anxious or depressed, and make sure you ask friends and family for help when you need it. It is such a difficult condition to predict but there are more good news stories than you think, I have friends in psychiatry and neuro-rehab who both say it is a treatable condition and a lot of people do ‘recover’ from this.
Minimum, once a month. Max so far, twice a month between 3-9 days.
I keep food diaries, stress diaries, activity diaries and still can't find any real links or triggers.
All I know is...the inbetween times I am almost 100% back to normal. I'm off all medication and when the relapses do happen, I have to listen and rest.
This is what makes this condition extremely frustrating
that is very interesting. its a different picture to a lot of what i have read about. i think it is the coming and going that does ones head in!!!! For a list of reasons too long to write about now.
one thing tho is just accepting the day i am having. i think that is all i can do at the moment. but i am quite pleased and grateful for this past 2 weeks. i really enjoyed my beach walk with my dog the other day.
yep. i am learning to see things very differently. i am already lucky to be living in australia now. most days you see something uplifting. even just the birds that visit the garden. the occasional lizard. sometimes a koala on a walk.
BUT on NY day i saw a sting ray in the water while i was on the jetty. it came directly towards me and swam right along side the jetty, right where i was. i got to see it as clear as possible. That was just magical. IT didnt care if i was wobbly or not, did it, haha.
You could be doing the same as I've been doing. That is thinking I'm recovering then doing too much. I still think a lot of people who are now being diagnosed as having FND actually have ME/CFS the major symptom of it is that exertion, whether physical or mental, increases symptoms. You start feeling well so you do more, you get away with it for a while only to come crashing down. ME/CFS is NOT functional even though many doctors, including Dr Stone, believe it is.
I thought I was getting well after 13 years of bad health. I've had lots of short remission, lasting days to 6 weeks, over the years but I've always end up ill again. I've just had a 5 month remission and was convinced I was recovering (I had a few persistent symptoms). I thought I finally understood what had gone wrong and how to fix it, but now I'm back to where I was.
The worse thing is I still haven't worked out the amount of activity I can safely do without making myself worse. It's hard to restrict yourself when you've been able to function normally. But this means I am getting worse at the moment instead of improving.
When I was well I doubted that I had ME/CFS, I quickly forgot what it felt like. Now I have relapsed I'm convinced that the whole FND thing I have been diagnosed with is utter nonsense.
The only way for me to stabilise my illness is for me to rest completely. At 59 years old, and 13 years of this, the chances of ever being completely well are slim. The best I can hope for is another remission and the self discipline to not push myself too hard.
Hi Paul. I keep going back to research chronic fatigue because it is overlapped with fibro, which I do seem to have. I have read that some see "true" ME as being something very different. Are you also talking about "true" ME?
There is a lot of confusion about ME, which can traced back to the 1980s when psychiatrists got involved. That's when Myalgic encephalomyelitis was changed to Chronic Fatigue Syndrome, and less stringent criteria was brought in.
Now anyone who is fatigued is given a CFS diagnosis. The fatigue that was originally associated with ME was mainly muscle fatigue. Although it could cause generalized fatigue it was main diagnosed by easy fatigability of muscles. In its epidemic form it was linked to outbreaks of polio mylitus. It was used to be called atypical poliomyelitis. Lots of other symptoms were seen with it too, many of which are now considered 'functional'.
There is growing evidence that the illness has a biological basis. In fact biological abnormalities have been found in it since it was first described in the 1930s. A good source of information it Dr Byron Hyde.
It is complicated. I'm off out now I'll try and write more later. Maybe on a separate thread?
Yes, I have been looking at this and some related articles on research. It is note worthy that the more detailed MRI scans picked up inflamation in the brain. I have read the same thing about fnd. Functional brain scans have also indicated abnormal processing within the brain for fnd.
It really interests me. Especially that there have been documented outbreaks/clusters of ME. That points to an infectious disease process.
I was reading about the trials into cbt and get. That was an eye opener, and amazes me. The interesting thing there is that no-one on here has recomended that type of therapy either. Which is basically what is on offer. If it helped or even cured, surely it would be mentioned - repeatedly?
Thanks for sharing. We need to look at this objectively, and read both sides of the debate to become informed. And it does no harm to learn about the normal biological processes too, to understand what we are reading.
With inellegant, objective, calm and informed argument, we might have a chance at putting forward our case. Perhaps, even, learning some references to quote, to show we are informed and not simply reactional.
The PACE trial, that supposedly showed CBT and Graded Exercise Therapy improved the health of people with ME/CFS has been shown to be a piece of extremely bad science. There is so much I could say about it but anyone wanting to know more should go to this website virology.ws/2015/10/21/tria... Sadly, this is the trial that some of those who are promoting CBT and GET for FND are using to show it works. The PACE trials is riddled with faults in its methodology, and this has been shown by scientists not just patients. But the medical establishment in the UK has stood behind it. I'm sad to say a doctor who is held in high regard by a lot of people with FND has come out in its defence. Although this isn't surprising as his mentor was the lead investigator in the PACE trial.
You would think that being knowledgeable about your illness would help, but I'm sorry to say, Jazymay, that in this case it won't. If you go and see a doctor armed with any information about ME/CFS that doesn't come from the group of psychiatrists that are promoting CBT and GET as cures, you will be viewed with suspicion and in some doctors minds it will be proof to them that you have mental health problems. I know this sounds far fetched, there is a time I wouldn't have believed it. The last 13 years have taught me to steer clear of doctors unless it is absolutely necessary and has nothing to do with symptoms caused by ME/CFS or FND.
No, I do get it. How do you prove you aren't mad if someone decides you are mad?
Every time you try to prove you aren't, you will be told, "well you would say that wouldn't you."
But there will be people out there who are like us who are doctors or have doctors in their family, and it will eventually become better researched and then better treated.
I just think that we can ask doctors good, honest and well informed questions. And if enough of us ask the right questions, perhaps some will have to stand back and question their perspective. The good ones.
I think the most important thing is to be calm and respectful in our approach. Then there is no reason for the doctors to feel challenged and treat us badly. If they do, they are then highlighting their own prejudices.
We can even turn the tables, asking questions like, "I am sorry, why did you react to my question like that?". As long as we remain calm and reasonable, there is no reason to be treated with aggression, indifference and irritation.
Power is in being calm and respectful. If we are not getting upset and outraged and all the other natural emotions we have felt, we level the playing field. If we are not treated in the same way in return, then we can question it.
That is a bit of a ramble, sorry. But I think that it is a powerful tool. Just my thoughts, and you need to get the appointment first! Lol.
Well, thank you everyone for your insightful replies. It has been very interesting to read through all your stories. Some have normalised things and others have given hope for the longer term.
Best wishes for the new year to you all. Keep happy and healthy as best you can.
It is not impossible, as far as I know, some people always have it, some people get better then relapse, and some people get better for good!-do you know what- it sounds like you have been very relaxed lately-that will help greatly.
Just see how it goes, but you sound as if you had a bad time and now you are getting better. Don't think about it or analize it, just see how things go.
Small update. It came back quite bad on Saturday. Still the same, now with some body tremors here and there too. But doing my thing, on crutches. So "whateverrr".
After a year in a wheelchair slowly got to walk again with walking aids, physio and prescription exercise, could walk without aids eventually but still have relapses. Neurologist told me it was a relapsing condition.
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