It seems as though neurologists feel as though it works wonders when it comes to treatment, however, they aren't the ones with FND. I got officially diagnosed back in September 2018 and they are "favoring behavioral components" and I was directed to get CBT for treatment.
My question is: does mental therapy directly affect your physical issues? With dystonia, paralysis, weakness, and urinary function? I'm not trying to be sarcastic or anything, but hearing that it helps for certain people with the same condition may help me be less cynical about this treatment form. I really do want to find a cause, treatment, or even if it will get worse because now I'm 21 and now I'm at that point in my life where I have to figure out what my life will be. Am I destined to be at home for years to come or can I seek out my life's goals with this illness? Will it be progressive as I get older? Will I gain more symptoms that affect my life quality? By this point I'm just complaining, but I suppose that's what therapy will help me do; complain to a professional! XD
Anyways, if anyone has had CBT to treat their symptoms, please let me know if it has worked or has not worked!
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Yes, they do a sort of CBT /physiotherapy programme for the movement disorders, dystonia, paralysis etc, which is suitable if you do not have fatigue. It's got about a 70% success rate. There are some who go in in a wheelchair and go out a week later back to normal. They don't recommend you go overboard once symptoms settle. It can come back. There are some who leave the programme better but not totally symptom free.
It works not in a psychological way, but works on distraction techniques. The thing about FND is that symptoms disappear on distraction. It's a biological process in the brain. The principle is it's the two types of processes to move interfering with each other in FND. The bit we choose to do "I want to walk over there" and all the clever stuff our brain does without us realising. Judging spaces, predicting what comes next, moving muscles just the right amount in the right way with the right timing. Once you have FND you are more conscious of those things and that makes problems moving (or not moving) even worse. So the distraction techniques help take that out of the equation to coax your movement back to normal.
It is different for everyone. Some it goes and does not return. Some have to keep practicing techniques learned in treatment. They certainly can help you have a better quality of life. The waiting lists at the moment are about a year. If you gain a better understanding of your illness through websites such as FND Hope and neurosymptoms.org it can help FND to settle on its own - or just help stop you doing things that are only going to make it worse. It's also handy to follow them on twitter and people like Jon Stone. There are also webinars on Youtube to watch.
Don't get upset if you hear the word psychogenic. The neurologist mean that there is a break down in how these messages in the brain interface with each other. It's often misunderstood by professionals too, that's why the term Functional Neurological Disorders is now used - just not everyone gets it yet. Prof Mark Edwards explains it well in his webinar from April this year.
Good luck. I hope there is treatment in your area. You are not alone. xx
I actually had this discussion with my current clinical psychologist today.
Cbt helps us in two ways, it can directly reduce symptom severity/duration and increase periods between episodes. But importantly it also helps us deal with having the disorder in general, and building resilience against it. Keeps us kicking and fighting, instead of letting others push us into the "learned helplessness" that takes a part of it a way.
I personally found project-based cbt helpful for symptom reduction, but I haven't done that in a while so I've became re-symptomatic.
What worked for me for years was neuro feedback to retrain brain wave patterns & I was able to work quite successfully as an RD. Then intense exercise helped me 5x per week I think it took muscle energy back to normal levels. Then THC for years kept it at bay. Finally at 40 it progressed into all day & night muscle spasms with severe anxiety and I’m now on Valium and disabled. Each persons journey with this awful disease is different. I did several forms of counseling & it never made a difference in symptoms (except Biofeedback) Good luck! An actual cure would be nice! Remission is possible, but for me it kept returning though with several years in between.
Hello Yes there is quite definitely! My name is Nick Manely, I was diagnosed with conversion disorder and not even told. So the story goes on 9yrs layrt all have been doing everyday is to teach y body and brain to do little task for small motor skills treatment everyday. If you don"t do this or think this way it will be a dark dark place for you to be in. Trust me the Black Hole is very dangerous space for your body and your brain. You have to become your own Dr and the Thinking changes you dynamically for the bitter. Refer to videos that have been produced by different people on YouTube/Nick Manely.
I work so hard on doing this everyday that my body shuts down harder, but the benefits psychologically and physically are so rewarding. Accomplishments on what you can do and retrain the brain on what you can not. FND is such a paradox to live in, but by trying to understand and breakdown individual pieces like a puzzle is complicated. So bring it to it's simplest terms youwill be amazed!!
Try bouncing balls, balance boards, art, painting, tai chi,etc…
Balance your strength and strengthen your balance!!
Hey! I’m 23. Diagnosed when I was 22. I have doing CBT and to be frank it has helped a lot. Emotions definitely elevated my FND symptoms. Learning how to control and minimize my emotions reduced symptoms. Minor stresses seemed to eventually build up and I would have an episode. So for me the worst emotional trigger is stress (like university etc) so I decided to got part time and it was easier to manage. It’s very difficult. I hate sitting at home too but I always had the belief that I can learn something and kept doing things when I could. Often I couldn’t but I tried working on improving myself and I have decreased my condition drastically. The part that seems to be left to be are triggers and those are usually my emotional state and health so I do think CBT makes FND easier to manage and minimizes anything that could make you physically worse with it. But I would suggest doing other things with it to help. My journey with FND is long but decreasing so I just want to say to keep trying things and have patience. Patience is the hardest thing with this condition.
I am beginning to wonder if long term, 20, 30 year studies need to be conducted. I have had previous, brief episodes, and undiagnosed symptoms that were not debilitating for most of my life. When I was diagnosed, last year, I got better in 2 weeks with various physical therapies and it all made sense. Since then I have had "remissions" both days and months long.
Just reading what people say after a number of years, I wonder if there is more going on.
Admittedly, no one would be on here if they had been cured for 20 years either. So I am not necessarily getting a balanced view.
I do wonder if this is an ongoing condition, with better and worse days. Some have better days for a long time, so does it mean they are cured/better/healthy again, or will it pop back up again?
I don't mean this to be negative, or arguing against therapies that have benefited people. Not at all. I am just trying to make sense of an overall picture.
And I am probably doing a terrible job of explaining what I am thinking!! Haha!
Thank you for sharing your experience. I myself have days or even months to where My symptoms are a little to none but then they just returned. It’s a little frustrating especially when there’s things I have to do. I try not to be so critical of behavioral therapy treatment, but it all just feels so unnecessary.
From what I’ve seen once you have FND, it’s not something that goes away completely. I’ve had one full year of no symptoms and now it’s back with a vengeance! Some things can help certain people but the same thing can prove to be ineffective for others. I do wish there could be more studies in FND that are made widespread so the doctors can suggest other things besides seeing a therapist. :/
Hi. I’m pretty sure I read cbt has a 13% success rate. I think therapy can be helpful in general, especially to try and deal with being diagnosed with a chronic condition that is little understood and unheard of. But whether it is a ‘treatment’...? I don’t think so. (This is purely my speculation, with no cbt experience in relation to fnd, so pinch of salt please!) I’m not sure a drug with that low a rate of success would be prescribed, would it?
I think as an outlet for your feelings, go for it. Any kind of therapy, if it’s the right kind with the right therapist for you, is great. Not so good if they’re not good/right for you.
I wonder if the prescribing of cbt for fnd is because drs are at a loss as to what to do when faced with their ignorance, and they’re falling back on outdated ideas of what this condition is.
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