Hi, I got diagnosed last December. But still don't know much about FND, and all the things, like how to explain it, first aid, who should be on my support team.
I have been having incontinence for the past several days , pretty sure due to FND.
Have any tips, advice?
the way I was told about Fnd was think of your pc with many motorways coming to and from your brain and your pc has a virus which is causing gridlock look in the traffic movement so signal cares are not getting though to the correct places or times hope that is clear confused me for ages
For the incontinence this goes hand and hand with fnd not a lot you can do to be honest I take some trousers and underwear with me moth places I go and if I know it’s a special day I will wear a light pouch for that extra security
The best person I feel who can give you the most help believe it or not is yourself be kind to yourself if you can not do anything then you cannot do nothing fight it try not to judge yourself on the past you and the new you with Fnd it’s a killer
Family and close friends talk to them about Fnd allow them to ask questions be honest about it as for medical team I’ve no clue I’ve had it for 8plus years I think and doctors I’ve met in the uk are just plain rude NHS and private so don’t go chasing answers from them they will make you fill more nutty than a nutroast dinner
I hope this helps a little please take care
Tabe
hi, as previously mentioned it’s a software problem not a hardware problem. With me it started with a reaction to meds that brought on symptoms like stroke, after testing they found nothing then after a lot more testing (19months) they diagnosed FND. In my case I forgot how to walk so had to be taught how now back to 65-70% normal just look as if drunk.if you have a symptom get it tested it could be something else. I developed a tremor after three years and had tests to rule out Parkinson’s and it did turn out to be FND related but always better to check. You will get a lot of advise on here hope you find something that helps. Kevin
Hi maddylovesball,
Incontinence is fairly common for people with Migraine so if you haven't had an assessment for migraine then I'd ask for one. There's some advice on the FND Hope site about communicating the dx to family, friends and co-workers but I'm not sure there's much advice about what to do for first aid.
According to a neurologist in the UK the hardware/software analogy is used by some doctors to align their language with that of patients and although it helps for some people others find it dehumanising and dumbing down. Some of those of us who have read Why Your Brain is Not a Computer (UK article in The Guardian) think the analogy isn't remotely appropriate.
It's thought that treatment for FND starts with an open and transparent conversation about the symptoms and the ruling in signs used to make this dx, preferably at the point of diagnosis. Unfortunately this doesn't happen very often in the UK so I hope it did for you and that you can access appropriate treatment asap.
I find the software analogy just hogwash tbh. I have Fibro, another imo dustbin diagnosis and when I recently saw an NHS Physio for an unrelated shoulder issue we got to talking about how I've found the Fibro diagnosis a very useful hook to hang everything that is ever wrong with me onto by doctors. Consequently I've become understandably cynical and never take their first stabs at a diagnosis seriously.
I was disappointed that this Physio used the same stupid software analogy about Fibro, yet when I said Complex Regional Pain must fall into the same catergory he started saying that's a terrible condition. Yet my understanding is CRPS is deemed to be " functional" in nature.
I read a lot of medical literature and the latest research carriedout by Queen Mary University and Liverpool University suggests Fibro could well be autoimmune as they've replicated symptoms in mice by giving them certain antibodies, and also returned said mice to health by giving them immune suppressing medications. Now early days and mice arent people but I believe both trials were independent of each other.
I think its an interesting line of research, Fibro shares a lot in common with CFS and postviral syndrome, mainly affects women as do autoimmune disorders. I digress but just wanted to say I share your skepticism about " faulty" software.
CRPS is functional and affects the limbs, also classed as a FND symptom. CFS and Fibro are similar, although (correct me if I am wrong, a close relative has it) but isn't CFS everyday, whereas Fibro you can be bedbound for a few days and up and about other days.
I've never been bed bound thankfully, Fibro is more pain related whereas CFS tends to be more fatigue related. At least that's my understanding anyway. I also have Ehlers Danlos and all of the symptoms of Fibro can apply to EDS, so I might not have Fibro at all. But the lack of diagnostic tests certainly muddies the waters.
Yes a lot of diff conditions have similar symptoms, good to hear it doesn't completely knock you off your feet.
One of the problems I have with the hardware/software analogy is that it is paternalistic (although the guy who told me that it's used to align their language with ours is much younger than I am) as are many of the outmoded biopsychosocial models re pain etc.
As far as I can tell, Fibro is, like PPPD, too much of a catch all diagnosis and I admire the work of Dr Anne Louise Oaklander who did a podcast via Neurology Journal fairly recently because she wants small fibre neuropathy to be on the radar for all neurologists. I hope this is the right link fb.watch/v7otA49VQu/
I kind of see it that your brain is a little overwhelmed and just protecting itself. I read your bio and hashtags, interested to know what your "rule in" diagnosis was?
There is an saying called "river runeth over". Everything becomes a bit too much and river overflows sending water in all directions, a bit like an area of the brain having increased activity in one area and redirecting/blocking the signals to another.
We need to learn how to regulate our nervous system and bring about autonomic movement/responses and with the right people by our side it is possible to recover.
Most importantly be kind to yourself and think of it as not forever, you just need to slow down a little and not be so hard on yourself.
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