Functional Neurological Disorder (FND) and fibromyalgia

[NoXfear]

A couple months ago my strength started to decline. At first on a rare occasion I had no strength and later on I lost a lot of strength in my arms, hand and legs.

After tests this ended up being something called FND. Which doesn't take away your strength but messes with your minds signals as to when and for how long strength needs to be applied.

And I wonder if this maybe has happened to other people with fibro too?

 

[Jemima]

Hi NoXfear,

I just searched back through the forum for the term "weak" because I could remember a few discussions in which people were describing muscle weakness, numbness, tingling, and twitching - all of which Google tells me are FND symptoms. There are quite a few relevant mentions from very concerned forum users trying to figure out what on earth is going on with their bodies. I'd never heard of this condition, and while it doesn't ring true for me, I imagine there are lots of people here who will be really interested to read about your diagnosis. Thanks so much for sharing this here

 

[NoXfear]

It took me awhile to get it diagnosed. i had a huge amount of test done. One of the problems you run in to is that your reactions are slightly delayed. so when you decide to move a limb it doesn't instantly happen. It is something that can be helped by psychosomatic physiotherapy.

The problem is that your mind has priorities. For example if you want to open a bottle your mind sends the signal to start using the strength causing a second of strength to be used. But your mind doesn't send the signal to keep the strength. So the strength is there but your mind never sends the signal to actually continue using it.

This link contains the best explanation for it. Functional Neurological Disorder - NORD (National Organization for Rare Disorders)

 

[JayCS]

Hi NoXfear: Thanks for these infos!

Not much to do with Small Fibre Neuropathy and Stiff Person's Syndrome that sprung to my mind first.

I'll compare using the webpage you quoted:
It shows lots of similarities to fibro - used to be thought of as all in the head / psychological, nothing visible in MRIs and EEGs, mind's signals would correspond to the CSS hypothesis of the cause of FM, symptoms varying between & fluctuating in patients, addition of chronic pains, fatigue, sleep problems, memory symptoms, bowel (IBS) and bladder symptoms, anxiety and depression, also there are triggering factors.
Main differences are that it does seem more in the brain and it seems possible to re-train the brain. Some of the symptoms like numbness, tingling seem like ones many fibromites have, but many others don't. The symptom you describe that it takes time to move a limb isn't at all fibro-like, despite the weakness involved. And especially: It can be diagnosed with the Hoover's test, tremor entrainment test and presence of non-epileptic seizures. As wikipedia says in a very short referral: Movement disorders and blackouts.

It does seem as if people with FND could well have FM, but not so much the other way round, despite the guess that FND is fairly prevalent.
Good to know, as it says not many people have heard about it.
There's a (free) review from 2018 on pubmed comparing FND, FM and CFS as regards their cognitive aspects (brain fog, ADHD-type-distractability): <A unifying theory for cognitive abnormalities in functional neurological disorders, fibromyalgia and chronic fatigue syndrome: systematic review>.
Interesting problem that neither neurologists nor psychiatrists think they should be treating, so this article proposes an integrated approach: <Treatment for Patients With a Functional Neurological Disorder (Conversion Disorder): An Integrated Approach>

BTW actually it's normally against the forum rules to directly hyperlink - in the past spammers have regularly opened and used an account here, unfortunately. So rather you just write e.g. <Functional Neurological Disorder - NORD (National Organization for Rare Disorders)> for us to search for ourselves next time. Don't be irritated if you find your link edited by a moderator soon, nothing personal.

 

[JayCS]

I've just realized (via a search for FND in my e-mails) I'd read of someone on another forum with FND, 3 months ago. Actually the same person who originally was suspected to have Stiff Person's Syndrome...
I'd read around & liked & recommended this youtube video: <A patient’s journey of recovery from Functional Neurological Disorder at Mass General Hospital>.
Maybe @djhsix will look in here soon too, with his twitching and leg jerking....
3 loose ends suddenly all connecting up...?

 

[djhsix]

Maybe @djhsix will look in here soon too, with his twitching and leg jerking...

Thanks for adding me. I came across FND a few weeks ago and ruled it out. But after looking at it again, I'm not so sure. Maybe I'll dig deeper.

 

[DebMarPir]

Just went to the neurologist today, as part of my journey to rule FM in or out. The symptoms I have include a recent flare where I lost some feeling in my hands and had weakness, as well, with some loss of dexterity. Feeling is back, most of dexterity (it comes/goes). I am to have an MRI next if the brain and cervical or upper back area next in a couple weeks. He says he needs to rule out MS but it is not unlike FM he has seen in other patients. I don't know which symptoms match up. This latest symptom was a little scary, I have to admit. But that was a couple weeks ago and no flares since with any loss of feeling. Writing this morning was a little weird feeling, but now it's fine. Why are our bodies so strange!?

 

[Jemima]

Just went to the neurologist today, as part of my journey to rule FM in or out. The symptoms I have include a recent flare where I lost some feeling in my hands and had weakness, as well, with some loss of dexterity. Feeling is back, most of dexterity (it comes/goes). I am to have an MRI next if the brain and cervical or upper back area next in a couple weeks. He says he needs to rule out MS but it is not unlike FM he has seen in other patients. I don't know which symptoms match up. This latest symptom was a little scary, I have to admit. But that was a couple weeks ago and no flares since with any loss of feeling. Writing this morning was a little weird feeling, but now it's fine. Why are our bodies so strange!?

Well done, DebMarPir. I have no idea why our bodies are so strange Good luck with the next round!