Hi it's been a while since I posted on here just spoke to my doctor and I could do with some advice as I seem to be getting progressively worse. I have started to suffer with occasional paralysis not very often but is a worry, my body spasms are becoming more frequent and mobility is becoming more difficult trying anything to stay out of a wheelchair at the moment, and a burning that has been going on for a while in my spine but now seems to be developing in other areas such as biceps. I am having my medication of pregabalin upped to what they call the maximum dose of 600 mg a day. I have to keep supplementing my vitamin d at the moment on a boost of 50,000 IU a week for the next 6 weeks but we know that my body will become tolerant to the pregabalin and I will have to change medication all together. There thinking of putting me on venlafaxine as is something I have had before but for a different reason due to psychosis many years ago. Any thoughts would be welcome as I really don't know what to do anymore.
Update of my FND of 7 years - Functional Neurol...
Update of my FND of 7 years
Are you under an FND specialist I see Professor Mark Edwards at St. George’s hospital in Tooting I don’t know where you are living but it might be worth seeing an FND specialist
Unfortunately I'm not under any specialists what do ever was basically signed off by everyone and just left to deal with it. They say it's not meant to be progressive butnin my case it has definitely got worse over time.
I know they do but many would not agree with that and they’ve got worse as there’s not enough treatment out there for us or multi disciplinary teams to help us so where left and they wonder why we get worse. It might be worth asking to see Professor Edwards they do inpatient care as well as they have a multi disciplinary team there as well.
I've just phoned my doctor's up to see if I can get a referral to my neurologist to see if they will consider sending me to the clinic in cambridge
Hi Terry. Sorry to hear you are having such a tough time . I’m also 7 years down this tricky FNF journey too and have mobility issues mostly.
The feeling of abandonment when left with no medical help on the horizon I’ve felt myself and it only adds to it all.
Luckily, since I first saw Prof Mark Edwards in London 6 years ago, he keeps my case open and we talk once a year.
I’ve been fortunate to benefit from a week one on one Nero physio in 2016 and again last year with his team. They’ve taught me several new techniques to help reset my brain when I get stuck with my walking.. Knowing I have this contact every year really helps me.
Hope your GP is helpful, but please just push push push to get an appointment again, so you can be referred to a FND centre near you.
It’s so hard on top of all the symptoms, and a shame we have to keep on and on to get any help, but us lot are a determined bunch and we need to be eh 
Really wishing you lots of luck and well wishes. Stay strong.
Lucy in Brighton x
Yes'they' say it's not progressive, but then 'they' don't have to live with it 24/7. I have it easier than most, but still struggle to be able to do normal things. Takes a lot of concentration to do what others do automatically. It's hard when they give you a diagnosis and say goodbye. I do try not to think about what I used to do, but focus on what I can do now. I'm not on meds for FND and therapy not available here, regional Australia. I hope you are able to cope and still enjoy what you can. Take care!
Hello there, I am also on Pregabalin 600mg top dose per day, I have spasms but not too bad, in my opinion I fear that I will be on this medication for the rest of my life, or until they eventually introduce better meds, but I do feel that Pregabalin helps me a lot , I have so many other debilitating symptons but I feel that pregabalin keeps me on track somewhat. I have a very good GP who is on track of all the new meds, BUT, and this is big BUT, the aim is to get better and the GPs etc dont wont to put you on meds for the rest of your life. Having said that, FND brings with it loads of different painful things and the docs are still learning about it so, just have to keep on telling them how we feel!! I wish you much love.
I would suggest you ask for a referral to a specialist treatment centre. The best I know is Dr. Chris Symeon at Queen Mary's hospital Roehampton where I was treated, although there are 4 others in London and all worth looking at
600mg pregaballin is a pretty hefty dose. I'm assuming it's for chronic pain? Also , nasty side-effect is sugar/carbs cravings, which can cause their own problems. There are other pain options out there.... Have you asked for a referral to a pain management clinic? I personally wouldn't be too happy taking that dosage.
Ooh, just read cocoferraro's reply. I take baclofen for spasms & essential tremor. Good luck with your referral x
Hi Terry, like you I have not been posting for awhile.
The burning pain sounds like nerve pressure somewhere and I would be cautious to pin it all on FND - could be just muscular fatigue, I get what I call `lightening burning' pain across my upper back when I have overdone some physical job with my arms.
But if you are getting this burning without overexerting yourself and frequently, you might want to just rule out any Heart problems, a simple ECG would be a good start point especially if you are on high medication?
Yes, I have had increasing problems, though more one side of my body which has developed over the years - so yes, FND can progress. I think you have to take it that the medical profession when they say FND symptoms do not progress or deteriorate, they are comparing it with Terminal Neuro diseases like Parkinson's, MS etc. Obviously if your body is not maintaining a natural posture/function it will deteriorate significantly and aging will add to this problem- least that is how I view it and that FND is still not fully understood by anyone as yet!
All the best for getting answers at appointments.
Look for the calm in the storm
Hi. I saw a really good webinar by the FND Society, with a doctor called Jan Coeburgh. It was about other co-existing conditions with FND. He is one of the few doctors I've heard about who doesn't want to throw all your symptoms in the FND bucket, but he does proper investigations instead. I think he is at St George's in London. The webinar is on their website. Hope this helps.
Hi, I am very interested in the Jan Coebergh webinar you mention but can't find it on the St George's web page. Do you have a more accessible web address? Many thanks
Hi, I have FND and with that I get paralysis too I feel it in my fingers and hands first and by the end of the day following work I struggle with movement and grip especially in my hands.
I have hip and pelvic problems from younger years which is worsened by my FND.
Ive been put on deluxatine which is used for depression but it also used for nerve pain. I didn't want to be on opiods for the risk of addiction and as I have young children I want to be as Sharp as possible. I found this medication has a lot more benefits than opiods did.
I was also referred to a psychologist withing the PPSS - progressive physical symptom service and have gone through a managing emotions programme over a period of 8 weeks which may be helpful to you. It's not all about emotions it's teaching you to pace yourself, manage stress and stressful situations and also retain energy. Do you have anything like this offered in your area?
I don't think we have that, the only help offered was chronic pain management which didn't help at all. My doctor didn't even know what the was.
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