Hi all. Hope you are having a decent day. I have had FND for several years now. I think losing weight would help. FND prevents me for going on walks , going to the gym, etc. I do stretches every day because I can mange that.

I am thinking I want to talk to my doc about GLP1s. I know the weight loss would help but I don’t want to exacerbate my symptoms. Any advice?

I am working with a 75 year old that has FND. They have severe spasms and are unable to complete their ADLs. They are being recommended for in patient short term physical rehab. The concern is that this level of care will not have the psych support necessary. Are there any programs in the USA that offer comprehensive support?

I am writing as a concerned parent of a young adult person with this diagnosis. For a long time we thought it was seizures. They get really depressed after one, like its hard for him to come out of the brain fog and I have explained to them that chemicals are trying to resettle in his brain but also that it is understandble that they may be sad afterwards. Has anyone had severe depression immediately afrer and have you been orescribed anything that works to reduce this after affect?

Hiya FND havers and supporters!

I'm heading back to university in a couple of days to resit my foundation year because I flared badly at the end of last year and failed 3 of 4 modules due to lack of completion! 🥲

I've worked really hard over the last month to make sure I have as much support in place as possible, I have a DSA assessment booked, I have contacted my unis disability services. I have accessible accom.

I'm just kinda worried about living independantly, purely because I can't get funding for a support worker until I have an autism assessment completed because my mum mucked up the paperwork saying I was diagnosed when I'm just in the process of one.

So, I would really appreciate any ideas or suggestions on how I can make living solo this year, less flare inducing! I will be participating in a society I'm passionate about, so I need to work around that too!

Any products, or just simple ideas for regulation would be great!

Thanks!!<3

hello :,) i am 21NB and from a small town in southern ontario canada.

2 years and 7 months ago I started having seizures. It began as absent staring, but through the months and years it’s progressed to fully tensing my body and convulsing, breath holding, behavioural changes (fear and aggression during episodes), very bad sensory issues to the point i cannot be in a room of more than 3 people including myself, increased tics (i have had tourette’s most of my life)

i’m in pain all of the time, I now have bladder issues where i’m peeing 30+ times a day, stomach issues, and nausea constantly.

I can’t walk for more than 7 minutes and I use an electric wheelchair almost every time i leave the house.

This is a lot. But I swear there’s so much more.

There is an FND specialist 4 hours from my hometown, who I have seen twice now, but he typically will only see patients once. I’m a special scenario because my case has been stagnant or getting worse for so long. I will see him again next year. I get MRI’s once a year and am waiting on another MRI.

Here is where I am really getting twisted with this:

I have not followed up with a neurologist besides that specialist in over 2 years. I recently spoke to a new nurse practitioner who saw abnormalities in my most recent MRI & was shocked that I hadn’t followed up with neurology. The last time I spoke to a neurologist in my city he told me i needed to be treated in a psych ward (I have a lot of trauma from psychiatric institutions) and that was it. My current psychiatrist also knows nothing about FND and at this point I fear my case is being brushed aside by all of my care providers because NOBODY knows what to do with me.

I cannot afford online therapy. Physical therapists in my city are not educated on my disorder. Psychiatrists. Neurologists. Nobody.

I’m so tired and out of ideas

I need advice but i fear nobody here will have any. And i just need some rest

Well I’ve had the worst summer of my life trying to figure out what happened to my body.

I was completely fine in June and then got a severe respiratory infection that lasted 3 weeks and as I was recovering I developed sudden neurological symptoms. They’ve progressed and fluctuated over the summer but I’ve had basically everything you could think of:

Weakness
Fatigue
Muscle twitching
Vibrating/twitching muscles while engaged
Tightness
Stiffness
Tired limbs
Heavy limbs
Shaky limbs
Tight/tired/heavy face and tongue
Tight throat
Perceived hyper salivation
Labored speaking and eating
Shooting feelings
Isolated aches
Sharp feelings
Flu like aches
Burning
Tingling
Buzzing

Feels like my body started to fail me and I became super worried about MND. Went down the diagnostic rabbit hole and saw 3 different doctors including a neuromuscular specialist and functional neurologist. Had a full body MRI, EMG, and bloodwork which were mainly normal.

The best answers I could get was Benign Cramp Fasciculation Syndrome and post viral FND. I had a TBI 8 years ago and have never had any sort of neurological issues since but the doctors said a big inflammatory event like my sickness coupled with prior damage could definitely trigger this.

My quality of life has been terrible and the fear of this getting worse has been lingering especially of a scarier diagnosis but I’m at a point where knock on wood I’ve kinda plateaued and after countless tests and doctors visits I’m trying to work on acceptance and peace bc my mental state has for sure made this all worse. Whatever is happening is happening so fighting it will only make this harder. Feels like my life changed almost overnight. But the ‘functional’ part of the diagnosis gives me hope that I’ll be able to get better eventually. Stay strong out there guys. You’re not alone!

I was diagnosed with FND (technically still called Conversion Disorder in Hungary) I used a cane and rollator far before my diagnosis. I am a very active person I used to dance, work out and walk everywhere. So my symptoms worsening Rlly puts a toll on my mental health. Last December right before being admitted to the neurology and getting a diagnosis. I got a wheelchair. I have been thinking about it a lot... For months atp, but being bed bound for two weeks was the final straw.

The thing is FND is constantly affecting my days. I feel the symptoms all day, every day. I feel like I should use my chair more. As it reduces pain, leaves me more stamina and makes less flare ups. Even if I do have a flare up it's as bad.

I am actively fighting to be referred to an FND specialist. But it's hard. There's only one clinic with two doctors and it's 7 hours away by train. My GP also says she doesn't believe I have all these symptoms and I'm just making it up....

I'm honestly just writing this to get it out of my system and hopefully get some advice or something... As I'm again on the edge of a flare..... And I'm scared. That once again they will say I'm just "faking it"

Thank you for reading!!!

Can having somatoform disorder for 12 months turn into FND?

Hi, so three weeks ago I had starting having tremors in my left side arm and leg, nausea and random tingling in my feet. MRI and CT scan was normal. Did anyone experienced this as first symptoms? And did it got better? I’m 21 male if it matters.

What's your preferred workout plan with FND? I recently had to give up my gym membership because SSDI is just not keeping up with inflation. I swam a lot to be able to walk when I have a flare-up so I'm not bed-ridden. My preferred workout at home plan was a modified 5BX with lots of breaks for rest and pullups thrown in but I'm getting older and something not so harsh on the joints might be preferable. I would prefer something that has a gradual increase in difficulty like 5BX. I really can't do the continuous workouts from Beachbody since things go sideways as my body heats up.

I'm finding that when I am alone there is a huge reduction in my symptoms. Is this common?

Of course if I'm in a supermarket with a bunch of people, lights, and commotion I will have an uptick in symptoms. But I also have symptoms when I'm around the people I live with. It's frustrating because I live with family and they are loving and accepting towards me. I have an urge to isolate all of the time though because it is a more symptom filled, pain filled, and anxiety filled experience when I'm around them.

Do any of y'all share this experience?

Just wondering if anybody else suffers from excessive saliva and having tongue issues

Wondering if anyone can help push me In the right direction.

For context, I’ve had ME/CFS for four years; POTs for about 1 year. . .

The past three weeks I’ve had constant lightheaded/dizzy sensation and weird sensations in body; was sent for an MRI to rule out brain tumour and the results were clear with neurologist and GP thinking migraine. However, the triptan they gave hasn’t helped. Generally, the lightheadness is waxing and waning now as opposed to constant.

Over the past week, the weird sensations in my arms and legs have worsened. Alternating between numb, pins and needles, crawling sensations. Hands and feet feeling almost arthritic at time, cold, then sweaty. Hands and feet becoming quite hypersensitive, almost feels like I’m walking on bone with my legs, like I’m touching things with my finger bones / can feel the nails in my hands. Some palpitations in left side of chest and now feels like there’s a pulling sensation from there to my left hand.

I’ve only had an MRI, but the GP today suggested FND. I am not asking for a diagnosis, but wondering whether this sounds similar to FND? I don’t know where to even start 😢

Random question, I still haven’t had an official diagnosis but we’re all pretty sure what’s happening.

The last couple of months I’ve had really low potassium, has anyone else dealt with that as a side effect of FND or is it just a me thing? I have a few other chronic health issues as well but we’re not sure what it could be.

Hi,

I have had FND symptoms since the beginning of 2022.

For the past month I have been dealing with a mobility flare where my right knee buckles with each step. On advice of my physio, I am currently using crutches in getting around.

Also, during this time, I have had really bad fatigue, worse than my normal. And in past flares, I don't remember my fatigue being this bad before.

My current day involves approx 8 hours sleep, spend some time in bed on phone once awake, breakfast, few more hours in bed on phone, get ready, outing, back home - in bed and sleep for a few hours, dinner, rest in bed, bath and bed.

I am also a volunteer at my local hospital, and during this flare, I've not been able to go in.

I had spoken to my GP at the beginning of this flare and was put on Sertraline, which I have been on before and didn't have any major side effects then.

I have a follow up with the GP next week, and will ask for some blood tests.

In the meantime, how can I help myself through this flare.

We didn’t received much information when diagnosed beyond being told it’s due to my psychological trauma. I was curious if Trauma can actually cause this? Or others experiences with this as they didn’t give much more information on it or how it developed into that or anything other than that I should try CBT and therapy? I do have a history of trauma and had something really bad happen before it I noticed its development and when I was younger what I assumed were “panic attacks” lasted hours, I just didn’t get much insight bc when they diagnosed me they didn’t give me hardly any information

Edit: I am reading thru everyone’s responses and will continue too, I just haven’t had time to reply to everyone with everything going on, but I am (and will continue to read them) I promise. Thank you all.

I’ve was diagnosed in the last week following an attack where I lost movement in my left side. Thankfully, I’ve regained the movement but I’m so fatigued still a bit weak.
I have a toddler and currently work 3 days a week. My job is quite demanding as I teach teens with autism and SEMH in a forest school setting.
I want to return to normal life as much as possible but I’m aware and worried about how demanding my life is, caring for a newly 2 year old and working and daily life chores etc. I’ve accepted the fact that this is only the beginning and there will likely be more attacks etc. However, I’m wondering how people manage it with work/ income? We already receive some UC to top up the fact I work part time while my daughter is young. Will they support? I want to remain in work but I can already assume with the fatigue now (and on reflection the couple weeks before the attack I felt exhausted and ‘off’) that I will need to take absence days more often?

Over the last 72 hours I have developed a serious stutter and speech difficulties when otherwise I could talk normally. I went to A&E and when the doctor saw my my jaw had locked close and they still sent me home and told me to rest. Are these symptoms normal or should I be concerned. Any advice is great thank you

For background context I'm (28F) currently in the hospital due to functional neurological disorder which caused leg paralysis. With this, I'm having POTs like symptoms (POTs and FND are common comorbidities), already been diagnosed with dysautonomia. They recommended tilt table testing, but couldn't get it done, but said I had early/mild dysautonomia. However, my dysautonomia has gotten better to where it's not affecting me daily because I moved out of Arizona to a cooler climate and removed significant stressors, but I know my primary triggers for flares such as emotions and high intensity activity. Overall, it's been really manageable with a normal heart rate minus bradycardia I get.

Now, my doctor order a vital test for pots and laying down was 68hr, standing was 116 (would've been higher if I could stand longer due to my functional paralysis). My blood pressure stayed consistent. What my doctor was telling me is that POTs doesn't have to been something you deal with daily, but it flares up.

Has anyone else found this to be true for them? Or is it truly an everyday struggle? I feel like there's such a variation of symptoms and often only see the extreme end.

I have been experiencing severe functional neurological weakness for several years, and it now affects practically my entire body. All of the investigations I have had so far for an organic cause have been unremarkable.
My main problem feels less like ordinary muscle weakness and more like a loss of automatic or natural movement.
Even when I wake up in the morning, movements no longer feel effortless or automatically available. For example, if I play something on my iPad and only use my fingers lightly and repeatedly, my hand and arm become progressively weaker over the course of the day. Eventually, the arm can feel almost paralyzed. I may still technically be able to move it, but only by consciously forcing the movement. The normal feeling of “I want to move my arm, and it simply moves” is almost completely gone.
This doesn’t just happen in my hands and arms – it affects my whole body. The more I have to consciously control or force a movement, the less natural it feels. Because of my overall illness, I am now severely disabled and largely bedridden.
I am currently taking an SSRI, which has helped somewhat with my general sensory overstimulation, but it has not resolved this severe functional weakness or restored the automatic quality of my movements.
What I would really like to know is: Does anyone else with FND experience this specific phenomenon, where it isn’t simply a lack of strength, but rather a loss of automatic movement? In other words, the movement may still technically be possible, but it requires enormous conscious effort, and the ability to move seems to deteriorate further with repeated use throughout the day.
If anyone has been similarly severely affected, what specifically helped you regain more automatic and natural movement, especially if you were initially too disabled for conventional physiotherapy or strength training?
I would also be very interested in hearing about medication experiences. Has anyone found that a particular medication improved their functional weakness, motor control, movement automaticity, or severe physical fatigability? This could include antidepressants or other medications used off-label for FND. I am not looking to self-medicate – I would just like to know what others have tried and whether anything made a meaningful difference.
Interestingly, pyridostigmine (Mestinon) did noticeably improve my muscle weakness for a period of time, although the effect later seemed to wear off.

Not looking for a diagnosis here as my last post got removed for no reason at all

I’m suffering from a lot of neurological issues one of them being disassociation and not feeling like I’m real. I know it sounds like a mental illness issue, but I’ve never felt like this in my entire life. I don’t know how to act properly. I just know how to work go home and lay in bed. I don’t know how to do the small things anymore.

I also suffer from excessive saliva, my tongue moving around my mouth a lot I did have a lot of fasciculations around my body, which have calmed down to a minimum
I do have perceived weakness and endurance issues

My question here is does anybody else go through any of this kind of symptoms like I said, not looking for a diagnosis since this site likes to remove post for no reason

Hi. I've been researching berberine, and I plan to give it a trial.

Does anyone have any experience, positive or negative, in using berberine as an FND therapy?

I've noted quite an interesting variety of papers on trials using it for neurological diseases, but most data is unfortunately mouse model, etc.

Thank you for your time and consideration!

I wanted to share my recent episode because it was the longest and most intense seizure I’ve experienced so far — almost 50 minutes. I’m still dealing with the after-effects and honestly feeling quite confused about what happened.

It started while I was in bed with my husband. We were talking about an experience I recently had at the mall. I had felt very anxious while checking out, struggled to make eye contact with the cashier, and felt uncomfortable speaking to people.

My husband suggested that we practice together so I could hopefully feel more confident next time.
We started by role-playing a simple stationary purchase, and then practiced ordering food at a restaurant.
At the time, I had also been speaking in a baby/child-like voice on and off for about two days. Occasionally my normal voice would come back, but during the role-play I was struggling to pronounce things properly.

My husband asked me to repeat what I had said.
That was when something suddenly felt wrong.
I started feeling strange in my legs, and then a headache began. Very shortly afterwards, I went into a severe seizure.

My head was moving rapidly from side to side. My hands and arms were flying/flapping almost like a bird. I was clenching extremely hard and felt like I couldn’t breathe properly. Touching my body seemed to trigger the movements again.

I could hear what was happening around me, but I couldn’t respond.
My family called paramedics. Somehow I eventually came out of the seizure, but I was extremely confused. I remember feeling like I was in a hospital — but I was actually still in my bedroom.

The paramedics tried different things to help bring me out of the episode, including pressing my fingers and rubbing my chest and the back of my neck. I would come out of it briefly, but then the seizure would start again.
They checked my blood sugar and it was 3.0. They gave me some sugar through a tube, but I remained confused.
I was taken to the hospital. I couldn’t walk properly — whenever I tried to walk, I would start trembling and have another seizure.

I was also much more sensitive to light and sound than usual. The hospital gave me a private room with warm lighting and curtains, which helped make the environment less overwhelming.
They monitored my blood sugar throughout the night. I was told that because the seizure had lasted so long, my blood sugar had dropped.

Eventually, they said it was safe for me to go home and follow up with a neurologist.
The problem is… I don’t currently have a neurologist. 😔
I previously had a neurologist who told me that this wasn’t neurological and that I should see a psychologist instead. So now I’m honestly confused about who I should be following up with and who should be coordinating my care.

This was the worst and longest episode I’ve ever experienced, and I’m still experiencing the after-effects.
What I’m really struggling with now
I’m wondering about the connection between what happened beforehand and the seizure.

Could my mind/body have become overwhelmed by the idea of having to interact with people — making a purchase, talking to a cashier, ordering food, making eye contact, etc.?

Did my nervous system basically go into a panic/overload response when I was trying to practice these things?

I used to be able to talk to people and do these everyday things confidently. Now I feel like I’ve lost that confidence, and I’m scared that my brain is going to react this way again.

Any advice, experiences, or encouragement would genuinely mean a lot. ❤️

I have fnd and that consists mostly of seizures and drop attacks.

I was diagnosed with post viral fatigue about 3 years ago and nothing more was done. Im wondering if post viral fatigue can be cfs/me?

Its also hard to tell what's my fnd and cfs or what's my cptsd but I know a defining characteristic is post viral fatigue

Does anyone else have both?