Hi everybody, I am new to this sight and posting in general so please bare with me!
I was wondering if anybody has been diagnosed with FND but struggling with their diagnosis. For 6 years i have had awful migraines which then started to appear as a stroke. All of a sudden my leg stopped working properly, I had felt fine all day so it was very scary, ever since then I get a flu like feeling at times, wake up the next day and I am unable to walk properly, this lasts for days and then I am right as rain again. I suffer with poor circulation and the odd tremor in my hands, I am always cold too. MRI's are all normal, since the neuro said it was FND they placed me in psychotherapy and a mindfullness course, everybody seems to have instant pain and anxiety but all i do is wake up. It seems worse after excercise and studying. I am at a complete loss and so frustrated.
Sorry for the rant guys
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Bubbles86xxx
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I had CFS/ME when I was a teenager, following glandular fever, and have also suffered with hemiplegic (stroke-like) migraines for years, and now have FND. My neurologist told me having had the CFS and migraines pre-disposed me to developing FND, which began as a result of my immune system responding unusually to a virus. I gather it is possible to have both simultaneously.
In my experience, though CFS and FND have symptoms in common, I experienced them very differently. What you are describing sounds more like my experience of CFS, but I am not a doctor, and everyone is different.
Medical support and understanding seems to vary greatly, which is a great shame given the enormous impact it has on the lives of the chronically ill. There are still too many practitioners who treat invisible illnesses inappropriately. My life has changed dramatically since I have been in the care of Professor Mark Edwards, who is based at the Atkinson Morley at St George's in Tooting. He is a movement disorders specialist, and very knowledgeable about CFS and FND. You are entitled to ask your GP for a specific referral to him. The waiting list is long, but he is worth the wait.
In the meantime, the way I have managed both illnesses is similar, in that pacing, good diet and basic movement to maintain joint mobility are vital. I also found CBT to help me to adjust to life with chronic illness helpful both times (though I have been lucky enough not have mental health issues, as many do with either illness). Meditation and singing also help me with pain management. Also, don't be lonely, that's vital.
Good luck. I hope you get the support you need and deserve.
Prof Edwards is definitely one of the good guys when it comes to treating FND. He is very approachable and has assembled a good team around him.
I saw him in January/February this year with Glenn Nielson, a very talented physio. Was put through my paces (well, shuffling steps, then bigger ones and then walking, after a fashion.)
Not out of the woods yet. I was told to ecpect bad days. But there are good ones too. I had a great start to today. I walked unaided in the garden. Not for long, or far (it isn't a very big garden) This afternoon it is back to furniture hopping!
I just managed a 5 minute spin on my exercise bike, at very low resistance, just to wake up my damn legs!
So there are no miracle cures. The good days seem to be getting more frequent and the bad days fewer. Falls still happen. Bruises go away with arnica gel.
I also have tremors in my hands. So I trick them and my mind-body interconnection by writing a journal in VERY SMALL WRITING! Just for the sheer bedevilment of it. It is mind over matter.
Also, I find that I need to relax. Recently I have been trying deep breathing and to get into some mindfulness. This is after my 33 years (consistantly) as a Nichiren Buddhist. The latter helps too. It helps a lot. (But I would say that, wouldn't I?)
Stress on the other hand is my achilles heel. Any shouting, or stressful behaviour by someone else sets me off. BIG TIME. I cannot stand it and usually (almost literally) I just curl up into a ball. A neuro-attack I call it. It takes a long time to 'come down' again.
The frustration of the condition cannot be underestimated either. Suddenly you cannot do all those things you used to do and enjoyed. Like eating efficiently, driving etc.
Life does not end. There is a way. A way forwards. Keep reading these pages. Keep doing 'good' and 'positive' things in your life. Survive. Show all the nay-sayers and ignorant bu**ers that you can do it! What-bloody-ever!
USA? No problem. FNDHope extends its octopus tenticle influence there.
Prof Edwards is doing a webinar with Q&A on 22nd May (21:00 UK time which I think is 16:00 EST or earlier if you are further west.)
Find details on FND Hope site.
Glad you found the various downloads. There are moore on the same site.
Another 'event' is the first tuesday of the month - a video hook up (via Zoom). I joined the first and talked to a charming lady called Dee in Australia. And you think that US is far away!
Definately on my calendar for 12 June. 12:00 NY time for you guys Stateside.
FND Hope is a lifeline, a collection of folks who share a common 'condition'. We can change the ignorance (professional, public and generally) through sharing our experiences.
We can win. No-one should feel excluded or isolated. The work that Professor Edwards and his noble team (special mention for Glenn Nielson, physio extrordinaire!) is supplemented by our experiences. How we feel. We know what the 'real world' is like! We know what works for us. It may help someone else to crawl out of the deep dark horrible FND pit.
OK. That's enough. I must return to my Buddhist practice (my personal lifeline).
As far as "struggling with their diagnosis", I struggled with mine for over 2 years. Then I bought and listened to the Kindle version of a book called "Functional Neurologic Disorders" that helped me a lot in accepting and understanding my diagnosis. According to the book, a brain can believe a sickness into existence. I highly recommend getting the book, because my FND symptoms have decreased since I started listening to it.
I shall look out for the book. I was told that (an unfortunate event post-op) in Nov 2016 triggered a condition called serotonin syndrome. This came with tremors (maniacal thrashing of all four limbs) two heart attacks and resusitation). I had a month in Hospital where they continued to treat me for SS. But no firm diagnosis. That came 7 or so months later.
Now post-treatment in St George's things are improving. Long road ahead. Taking it slow and steady - no other choice.
The cause of my fnd is a disconnect between my brain and CNS. Brain says this. Body says f*** that I'm doing my own thing. Like falling. Or seizing up. I was living in a constant fight and flight mode. (BTW my diabetes has improved since treatment in Jan/Feb) Since then tricking my autonomic system to react 'normally' in a state of rest and digest unless in danger etc- has helped. Mind over matter? Possible a good measure of that. Think yourself healthy? Yes this too. Now its a 'try not to worry' (pah, as if!) exercise when I can and re-start to live. I look forward to the last one!
I will win. I will.
Good luck on your journey.
RWT
HI guys
You should keep in mind that you may not actually have FND. I was diagnosed with FND after doctors could not find any other explanation for my symptoms. As it turns out, I very likely have leaky gut syndrome, which causes leakage of toxins from the gut into the bloodstream, and produces symptoms very similar to those associated with FND. FND tends to be diagnosed when neurologists/doctors aren't able to identify the cause of various intense symptoms. It's good to keep your mind open to other possible causes for your condition.
You are so right to point this out. There are so many possibilities. I was hinted as having Parkinsons, Lance Adams Syndrome (I hadn't heard of it either - only about 150 reported cases world wide - which was a complete guess later reversed by a neurologist) and "possible something functional". It can be used as the out-tray of I don't know school of diagnosis. Everything else has come up negstive, let's shove it into the FND drawer.
But no. It is a recognised real illness. Debilitating but treatable to some extent. Research is always bringing in new ideas, new thoughts and new sufferers who have their (our) part to play in the eliminate the obvious game.
I applaud your suggestion to keep an open mind. Closed minds lead to missed opportunities.
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