My neurologist has suggested that I start working with a therapist or psychologist who specializes in functional neurological disorder.
Also, she has suggested I find someone who utilizes CBT (Cognitive Behavioral Therapy).
Has anyone found success with a therapist who specializes in either FND and/or CBT?
I'm not sure where to even look. I have not found anyone locally (I'm in the California Bay Area).
I really doubt there are a lot of therapists who specialize in FND. Have you tried finding a Neuropsychologist near you? You can also ask your neurologist if they can recommend one, if they even know of one.
I imagine it's very different in the US but in the Uk I managed to get a referral from my neurologist to a neuropsychologist who was trained in FND, it made a huge difference to managing my symptoms, sadly it was time limited and I wanted to continue to do deeper work I ended up searching for private therapy. As very few therapists have heard of FND, I widened my search to include therapists who had experience of working with people who suffer with chronic illness. There seems to be a lot more therapists who have experience in this area and I didn't find it hard to find a good therapist. Since working with me she has done her own research into FND, so she can support me best. In my experience the key thing is to find a therapist who is open to learning new things and doesn't have a fixed mind set about illness and trauma.
Ahh, that is a good idea on how to broaden the search. Thank you!
I found some help with therapists that utilize CBT, but I found the most help from DBT skills class as well as a neuro-psychologist in Colorado who runs a course called FND Courage online. I would check that out and combine it with a good therapist that is well versed in chronic illness or the nervous system. Somatic therapy has also been tremendously more helpful than CBT. I found that talking about things only gets you so far. Getting in tune with the nervous system and the body is key when dealing with FND.
FND Courage is a wonderful program.
I hadn't heard of FND Courage. Thank you for letting me know about it!
Hi, I’m from the Netherlands and I’ve been diagnosed with FND 3 years ago. I’ve been working with several psychologists due to CPTSD next to FND. As of my experience I think it’s highly necessary to see a psychologist when diagnosed FND. It helped me a lot. Like; I lost a lot of fear about what was happening to me, reduce stress and getting conscious of my body and my symptoms. I also getting a lot done with my physiotherapist who’s specialized in FND. Maybe that’s something you can look at too.
Have you seen this site? It consists of information about FND; fndhope.org/usa/
Good luck!
Hello,
I am in the Chicago area and my neurologist made exactly the same recommendation as yours did. There is exactly ONE therapist in Chicago who specializes in FMD, and she no longer sees patients. My guess is that this situation is rather typical in the U.S., although it seems substantially better in the UK. It seems really disingenuous for a neurologist to recommend a treatment which he surely knows is not available in the metropolitan area.
I have found the neurologists I have seen to be adequate in the areas of diagnosis and explanation, but useless when it comes to treatment.
--Barb
Barb, I hope you read some of the other replies. Turns out there are some other good suggestions/resources out there. I agree, though -- it is disingenuous and perhaps even cruel to tell me that CBT is the only help that will work, and then there be no practitioners out there.
Your reply was very validating, so thank you. My personal belief is that FMD will only be treated with widespread success when a brain based treatment is developed. Of course, there is nothing wrong with breathing exercises, mindfulness exercises, and physical therapy, but since FMD is initiated in the brain, I believe it will take a directly brain-targeted intervention to treat it successfully. NIH is doing some interesting research into TMS.
I hear you, that makes sense. I hadn't thought of it quite like that!
Barb, do you recall the name of that FND therapist? I am a therapist who would like to learn more about what kind of treatment works for FND. Thank you!
Dr. Erica Sieg at Northwestern, Chicago
fantastic… Thank you. There needs to be more than one person who knows how to help people with FND!
Hi, my neurologist referred me for psychology. I was introduced to relaxation and mindfulness.This has been very helpful to prevent boom and bust due to severe fatigue from FND. I believe pacing is essential, to know your own levels of activity. It is difficult for me to slow down. However putting ‘me time,’ into my daily programme has helped me to cope with my daily routines.
A friend here reminded me that I used to see a therapist whose primary modality was mindfulness and breathing techniques. I reached out to him today. He is out of network and only meeting virtually, so probably not going to work for me. However, I can do some of this at home, and as you said, having awareness of my energy level and pace is so important. Thank you for that reminder.
Hi CROakland I had CBT 10 sessions from one in the team and 4 from another staff member. Maybe because of all the things in my life it did not work for me. But we are all different. I am however getting help with my facial paralysis which helps me a lot from a truly wonderful therapist 😊I just hope you do get a decent therapist that will listen to everything you say and not twist what you say to suit themselves. Good luck lots of positive comments on here hope you get sorted X
Hi everyone! Thank you for sending so many replies! I learned a lot and hopefully others did too.
My update is that my epileptologist knows of a program at Stanford University here in California that specializes in FND. She has referred me to them and when I learn more about what they offer (and if insurance covers it) I'll update again.
How do you feel when out and about ? 
FND and CBT- does it actually work?
Do you feel overwhelmed by your carer
Have DID and recently diagnosed with FND
Really feels like i have gone a step backwards☹☹☹
