Hello, I have been experiencing sporadic episodes of paralysis for the past three years. I start feeling slowed down, and heavy, and then I just freeze like a statue- I am completely aware of my surroundings and am completely conscious, but can't move or speak. These episodes can last between 2 and 30 minutes. It's so debilitating, and makes me worried about going places alone.
I've been to cardiology and neurology and had blood tests, and nothing has come back. I was told by my doctor earlier this week that I probably won't ever get a diagnosis, which was super helpful -.-
So, I'm basically looking for some support and knowledge that it can get better?
Thank you x
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PsychosomaticNerd
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I'm new to this, just diagnosed with FND a month ago. But I greatly fear paralysis because it's so hard to move my arms and legs (though still possible.) Today I lost feeling in my right foot except for tingling. I hope if I do get paralysis it's on and off instead of constant.
Do you feel that having an official diagnosis makes it easier to deal with the symptoms and the impact that the symptoms have on your life? I think with FND, symptoms do tend to be quite sporadic rather than permanent, from what I've read- thankfully!
A diagnosis makes no difference in the symptoms, but it does help whenever people ask me why I'm in a wheelchair. I can now just say I have a nuerological condition instead of explaining my whole medical history.
Yes, I didn't expect a diagnosis to make the symptoms go away! Just yeah, I just wondered if even having something to call it makes it a little easier to deal with emotionally, being able explain it to people (without just detailing your entire medical history, exactly as you said), and you can attempt to find a support network.
I guess I'm hoping at some point I can just tell an employer 'yeah, I have [whatever disorder]' and they'll get it, rather than looking at me like I'm a bit crazy!
So it's both...Sporadic is correct but it can be a Permanent long term illness that can either be a lifetime thing that you have to learn to manage e.g having regular 10mins breaks every hour or couple of spread out hours in the day everyday just to breathe and forget about any pressures, lie down, short walk, or appreciation of drag air by the window capturing the day etc just to avoid paralysis because your body is shutting down due to overload or you completely recover with time...
This is from reading real life cases of others experiences plus my own so far.
Hi, this happened to me about 3 weeks ago for the first time and I was so frightened as I had never experienced anything like this before. It was so so frightening! My husband and I put it down to me doing too much as I had a few weeks of feeling "normal again" and I forgot to pace myself and I took my daughter to a play date where the nine year old just screamed high pitch about 10 times and my body just shook non stop/tremors/wide gait I couldn't drive home, I had to get a lift. Once inside this happened to me the exact same thing, my fingers bent back, my body arched, my face contorted and then I froze for about 15 minutes, I was so so frightened as inside I felt normal but couldn't communicate anything. Since then I have started making unusual sounds when I am speaking almost squeaks and barks, a bit like torrets. My energy is very low but sleeping is not good and have difficulty walking sometimes but sometimes fine. This is such a strange condition it is so frightening and I am getting no medical help as although I have a diagnosis my GP thinks it's mental even though I hit my head 3 years ago and that is when it started. Does anyone else face this? I am having to pay to see people privately as I am feeling so desperate and I don't have any money anymore also you don't know if there any good. Any advice would be good though. Thanks Gill
Bumble3, that sounds like a non-epileptic attack, also called a dissociative seizure. The other symptoms sound like FND. The opisthotonus posture that you described (body arching backwards) is common in dissociative "seizures" (the sufferers tend to not like to use the word "seizures"). This posture is on the cover of the book Psychogenic Movement Disorders and Other Conversion Disorders: amazon.com/Psychogenic-Diso...
Like you, I have involuntary vocal outbursts that resemble tics, and I have echolalia. I have not been able to get rid of this problem. I can repress them my moving my lips or fingers, but they still eventually come out. Once in my life, 3 years ago, I had my hands painfully bend backward against my will, frozen there for about 2 minutes, right after I had a 3rd bout of explosive diarrhea in a hospital before surgery. I do not have dissociative seizures. I have seen many books about non-epileptic seizures/attacks on Amazon.com. There is a website called nonepilepticattacks.info . Dissociative attacks are discussed briefly in youtube.com/watch?v=bfLv5jM... . 11 out of 16 patients had remission of the dissociative seizures in a 12-week study that used cognitive behavioral therapy (CBT) books called "Taking Control of Your Seizures: Workbook (Treatments That Work)" and "Treating Nonepileptic Seizures: Therapist Guide (Treatments That Work)". The $220 book Functional Neurologic Disorders has 3 chapters on non-epileptic seizures.
My walking improved, after almost 3 years of extremely weak gait, after I watched an episode of TLC's "My 600-lb Life" in which the overweight patient refused to get psychotherapy, claimed that she was doing everything possible to lose weight, which she obviously was not, and wasn't losing weight. I thought to myself, "She's like ME in thinking that psychotherapy is worthless and thinking that she has done everything possible to get better." I wave of guilt flooded over me, and suddenly I had the ability to walk several blocks without a cane, which I couldn't do since last year.
Even if a physical injury started your FND, your FND can still be psychological. Your subconscious brain might have thought that hitting your head caused more damage than it really did. This would be considered psychological, although you cannot control it with your consciousness. FND only happens when a person is awake/conscious; that is evidence that it is "psychological".
Hi Pickleweed, thank you so much for your reply, looking forward to watching the clip. Very interesting about your other comments, Im very open to trying anything. Thank you for your reply I will let you know how I get on. Thank you
Bumble3, the first time that I watched that Stanford video I got offended, because the video implied that FND was psychological, which I was in denial of. Now, after more reading about FND, I admit that FND is psychological, although it's psychological in a way that people don't usually think of the word "psychological".
I think it explains it well, I know what you mean. But I think if we are to face this head on we have to be open to everything. I know that my head injury started this and I know that it triggered migraines, I also know that people didn't believe how awful migraines were as immediately I couldn't walk and even my husband didn't believe me. If I hadn't had really good friends my daughter might not have got to school some days as my migraines were so bad, his family thought I was "nuts" and in a way I'm not surprised if some of the emotions are coming out physically. Although I know I am not able to control it, I can try by meditation, therapy, relaxation to get better but I find it very frustrating as it's not all mental there is a lot of physical sides too. I think that is why it is hard to explain it, I have an unsupportive GP who thinks it is all in the mind so that is difficult you feel very alone. On the plus side I have a fantastic sense of humour and refuse to let this get me down, I am very fortunate I have a great life, lovely friends an amazing daughter and husband I am so much luckier than a lot of people, I can get through this at least it is not terminal, it's crap but there is a chance it can get better. Laughter is a great medicine! Also understanding it medically helps big time too, it's a shame I had to fight to find out about it all by myself though.... this site is amazing thank you everyone.
PsychosomaticNerd, can anything bring you out of the paralysis, like your phone ringing from a call, or a sudden impulse to do something like check your e-mail, a doorbell ringing, or someone talking to you? If so, that would be evidence supporting functional paralysis. Try not to freak out about it. Try to move your toes or fingers to get out of it. Paralysis is a fairly common glitch in people's nervous systems.
Thanks for your reply pickleweed. If I have an episode when I'm on a bus/train, coming up to my stop gets me out of it, or my dog picking up something potentially dangerous in his mouth, but low level things like phone ringing or people talking to me doesn't. Moving does bring me out of it, but it is really difficult (like the part in Kill Bill where she's speaking to her big toe, willing it to move but it won't). When I do manage to move significantly enough, I do come out of it. My partner often asks if I want to be moved, and if I make a positive noise or nod very slightly he will move me- normally an arm, or sitting me forward, or helping me to standing. Then I come out of it and sometimes feel really fatigued, and sometimes totally back to normal.
Ive had FND for 22months, have experienced paralysis as well as non epileptic seizures amongst other symptoms and I can say it gets better over time... And knowing how to manage it. Knowing you need to just get up and do something important etc... Like go to the toilet, or get a drink of water because you're so thirsty or whatever it is that means you are doing it independently without having to wait for someone to do it. I explain in this way because I use a wheelchair and often I have to wait on people to help me but other times I just say f*** it (excuse my French) I'm doing it myself. Self distraction techniques you can use are imagining you are somewhere you love, the beach or be creative e.g use your surroundings, smells, the fresh air from the window etc so if you're laying on the bed, aim to touch the edge imagining whatever you want that edge to be, sand, or the lines of a railway track I don't know just something... To get you out of the state.. Use the pictures on the walls the art, the ceiling anything you can regardless of whether your eyes are open it shut. You can do it. You'll be fine. I say this like it's easy but I have very depressing days as my life was taken and snatched right before very conscious eyes as I had violet seizure wide awake seeing everything,. From that day nothing was ever the same again 😭 but now I have other days where I can manage it. It's a half disabled life... And just got to get on with it.. When I'm down I'm down (depressed and crying a lot) when I'm up I'm up (going out a lot, laughing and enjoying the up days) life is too bloody short. People who have never suffered a condition like ours take this saying for granted and don't realise what it actually means. Until they experience something like what we have, if they ever do.
Anyway good luck you will be okay. Try and be confident in yourself, just go out if you want to, do what your heart desires do not fear FND - if paralysis kicks you whilst you're out alone there are kind human beings out there who call the ambulance... I always get helped by strangers.
Keep a typed note in your bag or wallet where they would easily find it, explaining you have paralysis and you just need an ambulance to be called, the note handed over to the paramedics explaining nothing should be done and be placed in a safe place to have the time to recover.
Wear an FND wristband I think they can be found on fndhope campaigning page or promoting awareness page or get one made by these companies that print things or do personalised things.
And Or print the page on paralysis from neurosymptoms.org site plus your note 😎🤓🤗
I really hope this helps... Where are you based? I'm in London
Thank you GentleFlower. I do try not to let it stop me, it's just frustrating and actually really boring when I'm stuck for 20 minutes at my desk, staring at my screen and I can't do anything XD.
I've just ordered a medical badge online (I made one last week after a particularly bad episode at the pharmacy where no one noticed I was frozen for like 25 minutes, and when they did notice they just assumed I was having a panic attack/was anxious/didn't speak English), so the medical badge is making me feel a bit more safe in terms of being out alone.
They do a kinds of medical identification, and you can completely personalise it. Just helpful if you're out and about and have an attack of any kind. I hope this might be helpful =)
What diagnosis do you have so far? If it's an FND diagnosis why don't you go to a consultant who specialises in this, Dr Simon Harrison MAUDSLEY, Neuro psychiatry consultant, Denmark hill, kings college - look it up and call up and ask if you could steak to someone as you suspect you have FND symptoms but need advice on how to get your GP to refer you there. It sounds awful. I'm sorry you're having to go through this.
I don't have a diagnosis annoyingly. My structural neurological and cardiological functioning has been deemed regular, and I've been told my symptoms are too sporadic for it to be Potassium/Sodium related. I've been to a cognitive behavioural therapist, but we didn't even really get to the paralysis stuff in our 10 sessions as there was so much else going on- namely a high level of existential anxiety and depression leading to suicidal compulsions. I am thinking about seeing a somatic therapist, but maybe it would be worth looking up the neurologist you mentioned x
I hope you can find a way out of this. I too have anxiety and depression but I am hoping you can get a diagnosis this will really help you but that's something we just have to either wait around for of keeping fighting for. The neurologist might help diagnose correctly FND
for you if it is that - but it sounds like you have this.
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