3 week rehab ?

[Suebez]

Hi All,

I've been reading health unlocked since March this year. Was completely unaware of FND prior to that. A few months back I seem to remember reading about someone who had had a 3 week in patient admission on some sort of programme in a hospital in the UK. I can't find that info now. Can anyone out there tell me what sort of treatment to expect when eventually getting to see one of the seemingly very few specialists. Symptoms are,non epileptic seizures, paralysis, functional gait, chronic fatigue, depression,anxiety.

Thank you for any info you can pass my way.

I'd also be interested to hear about any successful recovery stories but I guess once recovered you have no need to keep logged into the site.

Kind regards Sue.

[tabey]

dear suebez

Im on the waiting list for the lishmen unit for reharb for FND. if you google this unit it gives quite a bit of info on what they do.

hope this helps

tabe

[thinkin]

Hi,

I was told by St Georges, London that they don't do the inpatient FND rehab programme on people with fatigue. It's too much for us, but you can get FND physio to teach you coping techniques you can do at home at your own pace. They give you a more detailed understanding of your symptoms too. They run it at UCLH, in London as well, it's where Prof Edwards was based when they were developing it. It takes about a year on the waiting list.

There's general advice, coping techniques, list of supplements and dietary advice on the FND Hope websites under "Healthy FND Living". It's a case of attacking it from all angles rather than just one. Say if you have vitamin deficiency that's underlying it, the FND may return. Also when you do improve you still have to be careful. It's like a cold sore, if the right conditions appear again it can reoccur.

Also if you have other health conditions they need to be under control. Optimise everything, even things like constipation. Gut and brain are linked after all. Things like meditation can help. Fighting it by trying to push thought it is harmful for you. The fight has to be redirected into other means of helping yourself, even if that fighting involves resting and pacing.

Good luck. xx

[Leesaloo]

Hi Suebez, it might have been me you read. Last December I had 4 weeks inpatient in London for FND symptoms. I was referred by Professor Edwards. I waited roughly 6 months to go in, I’ve read it’s longer now. They teach techniques to deal with FND symptoms that are uniquely your own, 1st week is spent on your symptoms then a plan is put together to help. I had to pick 3 symptoms to work on although I had more as they had to be short term goals as long term they don’t have the time. I chose walking, talking and seizure triggers. The best one for me was putting my heel down first when walking which immediately took away the dragging and foot turning in. I’ve been home now just over 8 months and although I’m much improved I’ve hit a block and am not improving as much as I’d hoped. If I overdo things my symptoms return with a vengeance. The fatigue is just an ongoing daily battle. My time in rehabilitation gave me hope and it’s hope we need to live on. Maybe next year will be improved on this year that’s all we all can hope for. Best wishes to you and I hope this helps. Any more questions I’m happy to answer for you.