New here but my wife was recently diagnosed with FND, after years of pain and struggling. That was initially a relief as we've struggled to cope with the unknown, and thought the next stage of finding treatment would be easier - which I now know was naive.
I've read through loads of posts on here and it is heartbreaking because all of the struggle just to get to this stage seems all too common. As do all of the feelings of being ignored and not believed by doctors.
Anyway, we're currently exploring CBT. We're in the Northwest UK and had an NHS referral to a specialist mental health provider. After an initial consultation, which seemed to go okay, and a 2 month wait for a follow up, they have turned around and said they cannot offer help as my wife is neither suffering from anxiety or depression. I'd be surprised by this basic lack of understanding of why she was referred, if I still had any faith in the NHS who have been awful from the very first GP appointment.
I have looked around for private practitioners who have some sort of background dealing with functional symptoms but am at a complete loss.
Has anybody got advice for these type of treatment, as I'm not sure where we go from here.
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James-UK
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I am so sorry you are getting the run around. In the United States I had problems with the same thing. What really helped more than anything was PT/OT. My PT picked up on the fact that visual inputs were causing my brain to "overload". We worked on techniques that I could use to reduce that: wear sunglasses, close one eye when walking, etc. In OT we worked on cognitive skills, hand eye coordination, and techniques to use when my muscles got "stuck" and wouldn't listen. She also gave me suggestions on how to adjust my desk at work, and we worked on my cognitive memory a lot. It was probably the most helpful thing that I have had on this adventure. The PT wasn't necessarily well versed in FND, but she knew enough to apply techniques that are used in similar situations.
Lots of things, it just depends on the muscle. If it's something gripped in my hand, I can place my elbow on a surface and lean my hand forward to open it. Or I can start doing ASL and my hand will "forget" that I'm gripping something and I can drop it.
If it's in my legs, there's a pressure point just under my chin that I can use to try to get them going. Or another pressure point outside me ears, stuff like that. Most sessions she would ask what I was having trouble with, and we would come up with techniques together to overcome it. OT was incredibly helpful for me.
I really feel for you both. I dont know exactly where you both are or much about the services in the NW but after a quick scan of this, I see there are a couple spread among Sheffield, Manchester and Liverpool. It may be that you can contact someone from one of these and they are able to point you to something more local.
I second justdrea81’s reply as Physio and OT along with speech were instrumental in helping me get back to work and a half normal life... Everyone’s FND journey is different but it is really important to get help early on to try and stop that incorrect pattern. I spent 2 years almost, hyperventilating as my brain forgot how to breathe properly. Couldn’t even walk to my letterbox. Then paralysed, stuttering etc. with my rehab teams help I have the tools to stop symptoms getting worse and can find my triggers eg large crowds make my hand tremors so I have a bouncy ball to hold to use as distraction. I’ve just started seeing a psychologist who understands FND and learning grounding techniques at present. I am the best I’ve been in years although I understand I’ll have relapses but now know how to pace myself. Hoping Mic67’s link was able to point you in the right direction, but never give up
Familiar horrific journey of blindness and misunderstanding. Terrible. There's a glimmer of hope, partly down to the fact you seem to be in the North West of England. Two points:
Self management is going to feature large in your future. I cannot recommend Mindfulness as a practice strongly enough. Get your GP to refer you to a reputable local practitioner (might be through a CBT resource), and please, approach the subject with an open mind. It works. Might need practice, but it works.
Speak to your GP about referring you to the Walton Neurological Centre at Fazakerley, Liverpool. It will be a journey well made. Once engaged, speak to them about their Residential Pain Management Programme (PMP - The Walton Centre). It's a life changer. I'm in West Yorkshire, with a VERY complex neurological background, and I'm happy to say the Liverpool mob actually understand - they're a revelation!
So then, start to get your head around the idea of self management, and get yourself to Liverpool.
Don't give up hope. Never. For as much as a condition might be dealing with you, you can deal with it in return.
I was diagnosed with FND at Walton Liverpool and told to look on a web site. They didn't help me. I'd be better doing a wizard's course and waving a magical wand.
Odd. Somehow we've ended up with two contrasting outcomes. I've been linked with them for a while now, due back there Feb'/March. 140 mile round trip that I do willingly. Seems we beg to differ.
I am glad your experience is a good one. I hope it continues that way. I thought Walton was cutting edge but I've been very disappointed on all fronts. I don't rate them and if there was anywhere else I could go, I would.
If you're thinking of trying mindfulness, there is an excellent free 8 week online course, called palouse mindfulness. It is very thorough, well explained, loads to read about, videos to watch and guided meditations and yoga for mindfulness. Well worth looking at . The psychologist I am seeing at a pain management clinic recommended it. It just seems to make me more centred, not letting the stress of everything get out of control. I'm in North Wales and was interested to read about the Walton centre's approach. Slowly, more knowledge and support seems to be gathering. Good luck to you.
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