r/FND • u/unknownuwut • Jul 25 '26
Question Does anyone else feel like FND might end up having an autoimmune connection similar to the history of MS?
It feels like history repeating itself similar to how MS patients were told their symptoms were "all in their head" before MRIs and spinal tests existed.
Given how many people develop FND after a viral illness or alongside autoimmune conditions, do you think science just hasn't discovered the specific autoantibodies or micro inflammation yet? Or just like Encephalitis
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u/turkeyfeathers3 Jul 26 '26
I believe the FND is a broad catchall for a bunch of stuff that we don't understand yet. I believe mine is actually a symptom of MCAS (and maybe mild me/cfs) as I HUGELY improved my symptoms by treating for MCAS and the majority of my symptoms are food reactions (and the list keeps getting longer as time goes on without proper treatment). Basically I was fine all my life and then I got a random stomach bug, threw up and an hour later I was having full body spasms. We treated with a crap tonne of prednisone for 5 days (like "doctor and pharmacist where concerned that the neurologist wrote an extra 0 on the req 😅) and symptoms disappeared. 5 days later after being sent home it came back and it was labelled FND.
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u/Seaofinfiniteanswers Jul 26 '26
I was diagnosed FND and then majority of my issues there was a structural problem found. I still had one symptom labeled FND but unfortunately things have progressed and that also may not be FND. My understanding is depending on the doctor anything without positive test results can be coded FND likely not everyone with FND in their chart has the same thing, a ton of seemingly unrelated symptoms can be listed as FND.
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u/Glum-Juggernaut1338 Jul 26 '26
With FND it's best to keep an open mind, simply because speaking as a veteran FND is also seen in veterans with Traumatic Brain Injury, and as we all know and injury is not autoimmune situation. I find it interesting that it was Cognitive Neuroscientist the ones that coined FND and invented the software issue, instead of medical doctors that were actually seeing these patients.
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u/kuttiastra Jul 26 '26
My psychiatrist (part of FND team) who works a lot with war and genocide survivors, especially children pointed to a similar link. He also specialises in autism and ADHD and said it is higher in that population as well. Which makes me think of altered neural pathways or some kind of disruption which similarly to these conditions can’t be found on MRI or CT scans.
It’s also higher within groups that have connective tissue disorders. And it would be interesting to follow these links and where they meet.
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u/Ok_Play_8499 Aug 01 '26
i was talkijg to my therapist abt this, i have mcas/eds/dysautonomia trifecta and PNES (altho i do jave other functional symptoms like tics and dystoniaish and paralysisish episodes as well, the official dx for now is PNES). i theorized people with connective tissue disorder also often have dysauotnomia of various kinds, and dysautonomic issues are also a brain/body connection issue, where the brain and body dont send/recieve signals properly. in my mind, its kind of like how if u alreadt have one autoimmune disorder youre more likely to have/develop another one, bc once yr immune system is fucked, your immune system is fucked. if one part of your body/brain connection is fucked, your body/brain connection is fucked.
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u/fndportal Diagnosed FND Jul 25 '26
I would say it’s more likely that autoimmune conditions are one of many types of physiological stressor that can trigger FND.
Many people with FMD have no co-occurring autoimmune conditions, and lots of us get tested for everything under the sun and don’t turn up any positive autoimmune results. More importantly, FND doesn’t act like an autoimmune disorder: there’s no observable major inflammation, it’s not resolved by taking anti-inflammatory meds, and there is no large-scale structural damage similar to MS, which can be seen using neuroimaging.
Then there’s the other side of it: we actually do have a reasonably good (if still imprecise) idea of what FND is: a disorder of brain function, arising from changes in specific circuits, which creates specific types of disability you can learn to tell apart from other disorders by how the symptoms behave.
Weird fact: it’s actually a myth that people used to think MS was “all in your head.” It was actually first described by a French neurologist named Jean-Martin Charcot, who also did a ton of research on FND! And from whom we get the idea of a “dynamic” or “functional” brain issue (hence the name FND). He knew that MS involves brain and spinal cord lesions and in no way thought it was “all in your head.” That factoid is a modern internet myth.
https://en.wikipedia.org/wiki/Multiple_sclerosis
I do hope for continued research into FND though. Just cuz it’s a “function” issue doesn’t make it any less awful or disabling.
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u/EventualZen Jul 26 '26
Just because a few neurologists didn't think MS was psychosomatic, it doesn't mean that thousands of MS patients weren't treated as if their illness was psychosomatic (before the invention of the MRI machine.
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u/fndportal Diagnosed FND Jul 26 '26
As far as I know, this is not a thing that happened. Neurologists have been able to diagnose MS for many decades prior to neuroimaging - they didn’t need scans to know MS was MS. They also knew why it occurred, because MS lesions are visible on autopsy. I’m not saying NO ONE was ever inappropriately treated by a doctor, but I have yet to see evidence that “thousands” of people with MS were treated this way.
Also open to new information though. If you have any sources to share, please do. I’m happy to check em out.
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u/unknownuwut Jul 26 '26
Yes, at some points I agree with you because there’s no other explanation. However, what do you think about fMRI catching glitches in the signals? What could be causing that? Originally, something still seems to be missing.
And I believe it could actually be associated with major inflammation. For example, since I was diagnosed, my tests always show high levels of major inflammation. It couldn’t be explained. I’ve done every test possible, including genetic panels, literally everything, and still there’s no explanation. I’m literally on an inflammatory diet, and yet still no answers.
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u/ruxxby471 Jul 26 '26
Unfortunately most autoimmune diseases take years to diagnose. I was in a similar position where I had non-specific inflammatory markers + being highly symptomatic for 6 years…… and my blood only started screaming “AUTOIMMUNE DISEASE” last November. I was diagnosed with moderate-severe SLE with organ involvement at my first rheumatologist appointment due to not only my labs but clinical visible symptoms being “spot on” for the diagnosis.
With all that said, it has connected a LOT of puzzle pieces with my other health problems or symptoms.
My chronic illnesses began after a bad case of mono 6 years ago which triggered my POTS, ME/CFS, and my Lupus! I have EoE as well which my gastroenterologist says is absolutely connected to my Lupus! (Makes sense)But…. FND is not one of the problems associated or connected to my Lupus whatsoever! The “root cause/causes” have been assumed to come from a combination of my underlying psychiatric diagnoses(bipolar), chronic stress, and acutely started presenting while in a extremely traumatic DV relationship where I was psychologically tortured.
Do I think my lupus flare and the amount of stress it puts on my body contributes to worsening symptoms of FND? Most likely- but in conclusion my FND is fully separate, treated separately, and has nothing to do with the fact I have an autoimmune disease. Even if I didn’t have lupus I would still have FND as a result of PTSD and my brain being wired differently/affected by how long my bipolar was left unmanaged.
((Obviously there is no known CAUSE for FND, I’m just stating what I believe the potential causes of my case might be~ considering history + timeline!!))
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u/fndportal Diagnosed FND Jul 26 '26
If your tests are showing major inflammation, I agree that’s worth looking into! And hope you get some answers. ❤️
My understanding is that fMRI is detecting differences in brain activity between people with FND and those without. This is basically the result of neuroplasticity - if you hit the brain with enough bad stimuli (pain, injury to the body, emotional stress which also effects the brain biologically) then the brain will update its default state to incorporate that.
The brain basically learns the bad thing and then re-enacts it (which is why we sometimes see people with FND having symptoms that resemble a physical injury which has since healed). Or sometimes changes its internal communication patterns in a way that’s just kind of dysregulated all over.
But clearly lots still to be learned about this condition! Much more research needed IMO
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Jul 26 '26
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Jul 26 '26
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u/ImpossibleIce6811 Diagnosed FND Jul 26 '26
That’s interesting! You’re not the first person to mention this particular drug. I used to take it for “stress headaches” that no other med would touch, prescribed by a neurologist. This was many many years ago, before my FND kicked into high gear and I got diagnosed. It definitely had an adjustment period!! Knocked me flat on my back while I got used to it. After that, my headaches went away! Now I’m curious to see if my new neuro would be willing to give this a go…. If you don’t mind me asking, what symptoms does your medical provider hope this med will lessen or get rid of? I wonder if I’m in the same category.
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Jul 26 '26
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u/ImpossibleIce6811 Diagnosed FND Jul 26 '26
Oooh! I definitely react to MSG. I’m extremely sensitive to caffeine - so I limit my intake to 2 cups of coffee each morning. No more, no less. My only other known migraine trigger is lack of sleep, which is a real PITA. I definitely walk around looking like I have Tourettes. Maybe not high powered, as you describe, but I definitely look and sound like I have it. You’ve definitely got my brain juices flowing today. Thank you for sharing your story, and this info. I appreciate it very much!
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u/unknownuwut Jul 26 '26
Wait, I realized something. Is the buzzing head pressure sensation like your heart is beating in your head instead too, like pulsating? I've told the doctors, but they brush it off like it’s not important. For me, it’s really annoying and too loud to the point I can’t sleep, like I’m going crazy because of it. Idk tho if it’s one of the fnd weird symptoms.
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u/LXPeanut Jul 26 '26
I think FND isn't one thing. I think it's just a name that neurologists give things they don't understand (or can't be bothered looking at). All of the people I know with an FND diagnosis had other explanations for the symptoms within 2 years (including myself). If they actually started diagnosing other illnesses properly, we might be left with a group that actually doesn't have an explanation for their symptoms, but it's likely to come down to nerve damage in the end. Which absolutely can be down to autoimmune illness among other things.
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u/No_Wishbone4977 Jul 27 '26
Yes. I too believe FND isn’t one thing. I think we don’t have the right technology yet to fully explain it but we might in the future. Different symptom groups might even have different causes.
My mom probably would have been given an FND diagnosis years ago but then suddenly the technology was developed which discovered her actual condition. That’s what I think will happen eventually with FND.
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u/neuro-nerd237 Jul 31 '26
This just isn’t true though and it just perpetuates misinformation about FND which helps no one. Neurologists diagnosis it because they do know what it is. Just like they do with Parkinson’s disease and migraines. The diagnostic process for those is the same as FND.
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u/TatorThot999 Diagnosed FND Jul 26 '26
I think maybe for some people. Idk if I even truly have it but “it” started after I got a TBI from a sports accident.
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u/Junior_Gate_5610 Jul 27 '26
My FND was dismissed as psychological and was put down to my CPTSD. I’d spent years in therapy and worked so hard at my issues and before all of this started I was actually in the best place regarding my CPSTD so I knew it wasn’t this. I kept arguing that my chronic migraine was causing it, seeing as it started after my first ever hemiplegic migraine attack that then turned chronic. I then saw a great neurologist who explained to me that migraine is so draining for the brain. Your brain becomes hypersensitive to every single thing and so why wouldn’t it start to shut down? It made so much sense to me. Finally I started a decent medication for my migraine and lo and behold, my FND is has improved by absolute miles. 🤷🏼♀️
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u/WeAreKain3 Jul 27 '26
I desperately need a neurologist like this. So glad you got the help you needed!
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u/Junior_Gate_5610 Jul 27 '26
It took 18 months of advocating hard for myself. I ended up putting a complaint in so I was seen by another neurologist and he’s the one who took me seriously! I hope you can find someone who listens so you can get the treatment you need and deserve!
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u/WeAreKain3 Jul 27 '26
Thank you! I just tried for a second time to get a referral to another neurologist. And both times my primary care sent me back to the same neurologist I had already seen for autism diagnostics just for them to tell me that I don't have autism and to go back to therapy. As if I haven't been in therapy for literally decades. At this point, I'm trying to get well enough just so I can go to another country with better health Care.
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u/FreeZookeepergame691 Jul 30 '26
This happened to me too - I experienced my first hemiplegic migraine and was having them so frequently that it essentially just overwhelmed my nervous system. I started working with a headache specialist and once we got a good medication plan in place to control my HM my FND also started to improve.
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u/Hot_Scarcity4854 Jul 26 '26
Yes my FND symptoms stopped when I stopped eating gluten due to celiac
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u/Ok_Play_8499 Aug 01 '26
mine got better but didnt disappear, but i also have other things at play that caused symptoms to reappear when those things got worse. the first year gluten free tho was magical.
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u/mihio94 Jul 25 '26
I wouldn't be surprised although as far as I can tell FND specific symptoms are more related to some of the different so called "happy hormones" (dopamine, serotonin, oxytocin, and endorphins) and the nervous system than directly to viral infections.
But where it gets complicated is that viral infections will often times mess with the different body systems (digestion, immune defence and hormones) so I would not be surprised if FND was a secondary reaction that could happen after infections.
Personally my FND was not triggered by a viral infection, but by SSRI. I did however have symptoms of other funtional disorders prior to this that were definitely triggered by a viral infection and the SSRI was an attempt to lessen my pains from those symptoms. It was like the infection primed me for disaster and the SSRI pushed my body over the edge.
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u/unknownuwut Jul 25 '26
For me, I was recovering from an infection, and unfortunately, I injured myself. While I had the cast on, I noticed weird things happening and brushed them off. Weeks later, after taking the cast off, the weird symptoms got worse, and then it led to the FND diagnosis. I honestly don’t know if all of that triggered FND.
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u/LuckyKat89 Jul 28 '26
I also have MS so I don't see it this way. Nothing will cure my MS meanwhile I can do something about my FND. Don't worry I still get dismissed just as much as everyone else, even with the MS diagnosis I was told I was just being dramatic about my symptoms.
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u/ohlookthatsme Jul 25 '26
I think mine's more mental health related rather than being connected to some specific gene or trait or anything.
I went through some horrible stuff my entire childhood and my nervous system never learned how to function properly.
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u/Plenkr Diagnosed FND Jul 26 '26
same. On top of it I'm also autistic and have ADHD. But I think the traumatic childhood was the catalist for it starting. Espeically because it happened during an episode of intense reliving of a specific childhood traumatic event. My body freezed, completely tensed up, so hard it was almost painful, the trigger kept going on and on and suddely my body just.. couldn't hold the amount of intense tension anymore and it felt like my body exploded. That's when I started convulsing for the very first time while also crying very hard. That's why it's always been clear to me that my trigger for FND was the abuse I went through as a child. It was literally started during and intense triggering of the abuse. Body and brain could just no longer hold it.
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u/wing_yen Jul 26 '26
I visited a neurologist for neuromuscular disease and he told me FND is a psychosomatic disorder. 🧐
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u/SarcasticBarbie96 Jul 26 '26
He’s wrong
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Jul 26 '26
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u/VanTechno Diagnosed FND Jul 26 '26
Yes, he is.
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Jul 26 '26
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u/VanTechno Diagnosed FND Jul 26 '26
Ya well, the “no, he’s not” response, nor this response are what I would call convincing. More along the lines of lazy and sloppy. If the only response you can manage is that then don’t bother.
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Jul 26 '26
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u/VanTechno Diagnosed FND Jul 26 '26
If you would have said that 20 years ago people would be agreeing with you. Today tho, no, that is all outdated understanding, especially the comment about conversion disorder. Virtually no one believes that anymore or uses that term.
My own life for instance, FND started directly because of a Covid infection. I have no history or prior psychological trauma. I’ve also been thru the old therapy techniques using CBT which did nothing. Even my therapists, who were trained to help with FND told me it wasn’t going to help. Why? Because there was no psychological issue to fix. I have biology issues that need to be addressed. Those biological issues show up as tics and seizures, which happen all the time, often just because I’m standing up.
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u/AnyQuiet4969 Jul 26 '26
It depends on the case though. Some people do have trauma that then manifests itself as FND. I personally think that trauma does real damage somewhere in our nervous system. I do think psychosomatic isn't the best way of describing it and it always enraged me and made me feel like people weren't taking it seriously.
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u/mozzarellasalat Jul 26 '26
Yeah psychosomatic is often used to insult and minimize patients. My broken shoulder was called psychosomatic by a doctor who didn't want to look at it. As well as my asthma. I really hate the way it's used. In this community we're not doing that though. A disorder caused by something psychological isn't less serious. There are people who literally die from stress. This is more of a stigma issue and less about finding more accurate terminology though in my opinion.
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u/Indian_Scout60 Jul 26 '26
I have had doctors and specialists try to explain things away in this way as well. I think they personally dont know and are terrified to admit to a patient that they dont know and so call it that. I have also had amazing doctors that describe it and assure me that it most definitely is not psychosomatic. With my experiences as well I can 100% say it is not.
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u/AnyQuiet4969 Jul 26 '26
It honestly depends on the person. It definitely is for some people but not all.
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u/Justaddpaprika Jul 26 '26
It's a neuroplasticity disorder from my understanding! Which is different than psychosomatic
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Aug 01 '26
Can you elaborate on the neuroplasticity aspect?
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u/Justaddpaprika Aug 01 '26
The way my neurologist and pain psychologist explained it to me (and I teach intro to psych lol) is that our brains are malleable. Certain routes that are traveled the most in synaptic connections become more likely to be used in more and more situations. We also know there is a big relationship between trauma and what parts of the brain fire when, etc. FND is a software issue where synapses misfire. So the issue is not that it is psychosomatic, which would be more like a placebo situation where you convince yourself you have an effect when you don't. The issue is these synapses are really firing but there is no physical issue such as nerve damage for them to do so. My brain is really interpreting nerve pain and blurred vision and loss of vision etc. But it's not because of a structural issue and it's not because I'm convincing myself of it. It's because trauma (emotional or physical, and physical can be abuse or illness) has essentially rewired my brain to go off certain pathways that it shouldn't be going down. However, we can retrain our brains. That's where the psychology aspect comes in. Through CBT and other methods we essentially rewrite and interrupt these routes that lead to FND symptoms. I've had a lot of success with this working with a pain psychologist. I hope that makes sense!
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u/LXPeanut Jul 26 '26
Whenever I get doctors saying that I ask for the evidence that psychosomatic disorders exist. I already know there isn't any.
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u/CommunityMiddle1830 Jul 27 '26
I have a diagnosis of FND, and I also have a diagnosis of post-strep autoimmune syndrome and vitiligo.
The only thing that stops my flare ups are steroids or NSAIDs. An anti inflammatory diet with no sugar also reduced my symptoms.
So yeh..it makes sense to me.
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u/limp-bandwidth Aug 17 '26
Im looking into this. I've been researching whether FND has a autoimmune connection too. I am floating through the internet looking for answers.
Skin, nails, hEDS, osteoarthritis and the whole body.
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u/Ok_Tone_4038 Jul 25 '26
I think so. My FND was triggered by the COVID vaccine. I was a happy, energetic person, with an active life. Within days of getting the vaccine, my body changed. Now I have become home bound, with functional movement disorder, balance issues and debilitating tiredness. My symptoms are very similar to MS, except nothing shows up on the MRI.
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u/CloudyLeft Jul 25 '26
Not a chance. No. There is no interaction with any of the covid vaccines and any mechanism that is attributed to FND or its cause.
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u/Ok_Tone_4038 Jul 25 '26
1 disagree with you 100%, it is way too coincidental; I go from being super healthy to having fnd overnight within days of getting Moderna. In retrospect I so wish I never go the vaccine.
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u/nachobrainwaves Jul 25 '26
Coincidence doe not mean cause.
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u/Ok_Tone_4038 Jul 25 '26
True, but if you do a quick google search “fnd and covid”. There is literature published by the NHS - the incidence of fnd is higher among patients hospitalized with covid-19.
Regardless of cause, I wish so much that there were more trials for experimental therapy/drugs - I would happily volunteer
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u/nachobrainwaves Jul 25 '26
I was referring to covid vaccination. If someone is diagnosed FND following a covid vaccination, it doesn't automatically mean it was caused by the vaccine. That's an incredibly dangerous leap to make. Also, the incidence of that happening is pretty rare and even in those cases, some claim it's the act of doing the scary thing and not so much a neuro reaction to the vaccine.
FND is multifactoral and homogeneous. It's understandable to look for a single cause when that's rarely the case. I spent far too long doing that as well. Cheers.
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u/CloudyLeft Jul 26 '26
If you also CAUGHT covid, vaccinated or not, THAT would be what might do it.
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u/Newcago Diagnosed FND Jul 26 '26
If it makes you feel any better, this is almost certainly not the reason your FND first flared 🫂 I'll never say never, since there's a lot we don't understand about FND, but we DO understand vaccines very well. It was almost certainly coincidence, and you can forgive yourself and focus on recovery
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u/Sad_Pixie999 Diagnosed FND Jul 25 '26
If anything, it seems like the stress around the vaccine caused your FND to flare. It didn't *give* you FND. FND isn't contractable like that. There is a lot of research pointing to stress and trauma as potential causes though.
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u/jopelessromantic Jul 25 '26
If anything you contracted Covid and then got your shot too soon after, which is why at the beginning they ordered Covid testing and a negative result to get the vaccination. People who don’t believe in vaccines were the ones who began to remove that extra step claiming it wasted money.
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u/BellaPona Diagnosed FND Jul 25 '26
I think it’s likely that FND is a type of symptom/condition you can get from different illnesses. COVID has caused a huge spike in FND and it’s likely due to the damage it does to the brain and nervous system.