Please read me before posting about SFI/FFI: YOU DO NOT HAVE IT
Posted , 32 users are following.
Please, I'm asking a moderator to "sticky" this post to the top of this forum.
Every other day, someone comes along and posts something about having SFI or FFI and have self-diagnosed this extraordinarily rare, and incurable disease. None of these individuals are neurologists, general physicians, or even nurses, but each has come across the disease on the internet and after having read the Wikipedia entry for it are now 100% sure they've found their disease.
How do these individuals know they have SFI or FFI? Because they cannot sleep at all, or when they do sleep, it's only for an hour or two at a time. Perhaps even during that hour or two, they wake up continuously. Their existing anxiety and/or depression increase greatly when they can't sleep, and they worry about sleep all the time. Worst of all, they develop memory problems, cannot focus on anything, much less do well on exams or complicated work. These cognitive issues become the main symptom they link to SFI/FFI. It has to be that right? Regular insomnia that millions of people suffer from can't possibly come with these terrible symptoms. MY case of insomnia is much worse than everybody else's and absolutely has to be something worse than just regular insomnia, right?
Wrong. These are all symptoms of just regular old, every day insomnia. Your case is not the one.
When my insomnia started, I was like you. I could not believe that insomnia could cause me to forget the names of my friends at times, destroy my concentration, and increase my anxiety to an extent that I had to leave a very good job because of a mental breakdown. Just like every other person that posts something about SFI on this forum, I thought that I had it and would be gone inside a year.
That was 5 years ago and I'm still here.
I still have problems with my sleep here and there. I no longer harbor any hope that I'll be able to sleep like a baby for 8 hours like I used to, but neither do I care. I get enough sleep to fuel my life during my waking hours and that is enough. I learned to accept the nights that I don't sleep at all or sleep very poorly and once I made that switch and was no longer afraid to be up all night, I began to sleep better. That simple choice has made all the difference.
The above symptoms are all terrible. They are hard to accept and live with. But convincing yourself that they are caused by something like SFI is only going to make your sleep anxiety worse, and further complicate your sleep.
Think about it for a minute. Out of dozens and dozens of posts on this forum where people are absolutely sure they have SFI, how many have actually come back and said they had that diagnosis confirmed by a medical professional? ZERO.
Stop making your insomnia into something that it's not.
Your insomnia is not special, or worse than mine or any others.
You are not the unicorn.
You don't have SFI.
You just don't.
7 likes, 72 replies
NECKBONE
Posted
Thanks so much to the moderator for pinning this post. This is a topic of great importance to the mental health of those suffering from insomnia. I am hoping all those who falsely believe they have SFI will read it as well as the thoughtful replies and understand they can move on from this unfounded fear, and begin focusing on the things that will truly help their insomnia.
christine66659 NECKBONE
Posted
one of the best posts ive read ...in my late 20s,,,i did not sleep for 6 mths due to ptsd maybe micro sleeps..i just laid in bed wide awake or with eyes closed..i still went to work and took my son to school....i was completely stressed out after the deaths of two of my children...i remember reading about fatal insomnia and convincing myself i had it..no i did not...my sleep returned .im now 52 and my sleep has changed again over the last year due to age and hormones...believe me it is not the insomnia that is the problem
..it is the anxiety!!!!💕💕
michelle70460 NECKBONE
Posted
Hi neckbone. i am new to this forum & i am currently going through the worst insomnia i've ever had. My insomnia consists of where i feel like i'm awake most of the night but somewhere along the line i am getting some sleep even tho it doesnt feel like it. Anyhow, i'm replying to your post cos i was guilty of thinking i had this remarkably rare disease but after a week common sense kicked in & said "dont be ridiculous, you've got a better chance of winning lotto like 10 times over. i believe that my insomnia is caused by menopause & anxiety over not being able to sleep but i want to commend you for talking sense (or trying to) into these people who think they have this 1 in 100,000 million odds disease.
NECKBONE
Posted
@michelle70460
Glad you found the post useful. I hated seeing people worry themselves over something that has no basis in reality. Insomnia is tough enough as it is, without the anxiety that comes from thinking you have an incurable illness.
michelle70460 NECKBONE
Posted
anxiety feeds anxiety as far as i'm concerned. Unfortunately for me i take after my dad, (worry wart). i was thinking the other day, that if i lined up 100 people & asked them "do u know what parkinsons disease is"? everyone of them would say "of course". But if i asked them "do u know what SFI is"? i'll guarantee, not one of them would be able to tell me. As we both know thats how rare it is.
tom71030 michelle70460
Posted
fatal insomnia is fake
michelle70460 tom71030
Posted
Fatal insomnia is not fake but the rarity of it makes it almost non existent but not fake.
tom71030 NECKBONE
Posted
i cannot talk openly about that stuff but use your brain a bit and think does it really exists and the documentary you have seen are they really true and the answer is no do u know that its so rare that medical sciene they didnt even take much interest in it and when u look on the internet they were mentioning it as an rare component which affects 1 in 10000000000 the question is if its that rare why its on the internet Answer is for money cause i became insomniac when i first heard about it cause my anxiety got worse and i start thinking that i have this horrible disease and a very interesting thing ive seen on the internet that so many young people were on the same boat as me it means that they get there self in that horrible cycle from which they can never come out they are visiting drs wasting money on medicines and want something for there satisfaction but what they end up in psychatric hospital thats all business plz open up your eyes and see cause in some parts of the world medical services are not free at all
and when u see there articles they were like micheal corke has this or that the question is did you see anyone's dead body yet?
Wake up this fake this something else not fatal insomnia a missnomer dont believe on everything you read or see on the internet
tom71030 NECKBONE
Posted
moderater plzzzzzz
tom71030 NECKBONE
Posted
moderator come on man
lily65668 tom71030
Posted
I suspect posts get delayed when certain of us mention an S and an F and an I. I have this problem myself. I think it's because I and at least one other poster asked the previous moderator (Alan) to remove all posts mentioning the dreaded initials. That was 2-3 years back when there was a real epidemic of panic-stricken young men on these boards convinced they had it - plus at least two trolls assuring them that they did. I was genuinely concerned it might provoke a suicide attempt somewhere along the line. (Yep - I know the 'S' word will provoke an earnest message from the automatic moderator!)
The paradoxical upshot seems to be that those of us who were around then (I know neckbone was) are blacklisted from mentioning it by the automatic moderator, whereas new posters can say it. Funny, isn't it? I get round it myself by using gaps or full-stops between the letters.
I'm going to report my own post, to see whether I can bring this anomaly to the new moderator's attention.
patient_mod2 lily65668
Posted
Hi lily65668
We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.
If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.
Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.
If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.
Kindest regards
Patient
lily65668 patient_mod2
Posted
Oh dear - I said as much in my post, didn't I? As soon as I mentioned the S-word I knew I'd get an earnest little message from the automatic moderator telling me to seek help. You have to laugh sometimes...
For anyone who's only read the e-moderator's post and not mine - be assured I'm really not planning to top myself!
tom71030 NECKBONE
Posted
i was trying to say something but moderator come on man
omein26046 NECKBONE
Edited
Sfi or ffi do not exists? im not a cruel person but sometimes the truth is stranger than the fiction they are playing games with our minds and in this modern age we rely on the internet to much that if it tell us that someone is standing behind your back and u can see that theres no one there but you will start believing it i suffered from insomnia for about 12 months and im still dealing with it some nights i sleep and some nights i dont or if i do i wake up multiple times in the middle of the night or i sleep but i do not remember that i eventually sleep or not but it got worse when i heard about this thing which is Ffi or sfi i became so stressed and start believing that i have it and i go straight 4 days no sleep and then get 3 hours it was an rare component n it says that it effects one in 1 million but the impact was so strong that so many people like me they start also believing in it that they have it cause what my daily routine was before going to bed i read posts on this forum about this disease and i became obssesive with it this is a horrible cycle i have suffered alot of times from insomnia but i recover cause i wasn't aware of all of that (ffi and sfi) and i was not worried at al
but after when i read ffi and sfi on the internet my mind played that trick on me that i have it and horrible videos on the internet like ricard siagan that fake videos has such a huge impact that so many of young teen agers start believing that this thing is real and they have it they create documentaries for other to get that mentally and dont believe on everything u read or see on the internet and sometimes u cant openly say words about something which is fishy cause ur life is the most important thing take care god bless insomnia is something thats hard to deal with but its not fatal and will not kill u and dont get yourself in a stage where u find no way out cause this is non existent
michelle70460 omein26046
Posted
SFI & FFI do exist, BUT, because your odds of getting this disease is so rare, it is almost non existent. By the way, the odds of getting SFI is like 1 in 100,000 million but we are trying to stop people from coming onto this forum thinking they have this incredibly rare disease cos they DON'T have it but thats not to say it's not real, it is, but just so incredibly rare. You would have a better chance of winning lotto 10 times ova. God i wish! lol!
omein26046 michelle70460
Edited
the man who played the character of an f and f and i patient i found him on the internet the whole people were saying that he is dead i was also feeling bad about his death and then i found him alive on the internet on social media site when i asked him about that stuff he said that he was paid and that was a promotion of an sleeping aid medicine and i was like wtf the things that you see are not real fatal insomnia fake
michelle70460 omein26046
Posted
sorry omien but i disagree. SFI & FFI are prion diseases of the brain, but again its rarity does make it almost non existent. I'm not sure what country u are from but i'm from australia & about 18 mnths ago a news reporter from australia, her mother was diagnosed with FFI (FFI is inherited only) which means any offspring have a 50/50 chance of getting it, & guess what, both her & her brother are carrying the gene. Their mother died from it 6 months after diagnosis, but again this disease is as rare as hens teeth.
michelle70460 omein26046
Posted
Also begs the question, why would a sleep aid company go as far as to say that the person died. Nope, sorry doesn't make an ounce of sense to me. Maybe u should stop believing everything u see on the internet. Goodbye & good luck with your sleep issues.
angela55814 michelle70460
Posted
Nope don t believe either! My nephew is a Dr and he's never ever heard of a case either. Dont believe everything you read just scaremongering
omein26046 michelle70460
Posted
you are talking about my friend hayley web from channel 9 some of the prion disease are not accurate and they were also the part of there drama this world is full of evil dont believe everything you see hayley web has cjd not ffi it was misdiagnosed jus wanted to create that fear of Disease for selling there products fatal familial insomnia is a fake hoax dont believe on everything please this is my request even medical drs who are in this field for 34 years they didnt even heard of that disease fatal insomnia is fake as lunar landing not just a sleep aid company behind there there is so much evil going on this world and the Australian reporter u r talking about hayley web and her brother they are my friends on Facebook from 7 years ok my Aussie buddy i love australia
omein26046 michelle70460
Posted
the journalist that you are talking about she is my friend from 7 years
omein26046 michelle70460
Posted
hayley is my friend on fb before she was not even a journalist ik her husband as well so plz but i love Australia
omein26046 angela55814
Posted
yes this world is full of lies dont believe on everything you read or see on the internet Fatal insomnia Fake and the documentaries were paid
michelle70460 omein26046
Posted
Well then that will tell you that it's real & i know i'm repeating myself but sooo incredibly rare & that's why people don't believe it's real but due to it's rarity it almost isn't.
omein26046 michelle70460
Posted
thats not real why dont you get it if u loves to live in a fear then u will but they were a part of the programe a tv show if it really exists why the research centre is only in usa and the reason they gave is that people take less interest in rare diseases if its that rare which runs in an genetic lines
dont make people fool how can it be an insomnia when u have worms in your brain i want to discuss this topic on youtube but not here cause i dont want that fear in my country United kingdom it is fake 100 percent fake i safe my country and wont let this anxiety and fear in my country cause i will bring them out and show them there real strength and give them that mindset to do something good for there country dont scare my people my youth thank u
people sleep well and if u get hit by insomnia dont worry youll b good and fine but dont get yourself in trouble by believing everything on the internet u can ask any Medical neuro professional they will all laughed at your face cause f an f an i is fake it was created by some to create fear
michelle70460 omein26046
Posted
People come on this forum to discuss their issues, not to cause arguments but you seem to think you know best so lets leave it at that ok. Learn to pick your battles on some other forum & especially not with me. Oh & i don't live my life in fear just pointing out plain facts you clearly don't understand. U came onto this forum asking for advice. DON'T come on here to cause dramas. Or i could be accused of calling u a troll.
omein26046 michelle70460
Posted
okay okay sister but im not arguing you you know what is wrong with people these days thT they dont want to hear the truth now i realise that if u want to live u have to mind with your own bussiness im not a troll or anything but it hurts that the children of my youth they are having problems with anxiety it feels bad and it hurts me so i can keep my mouth shut and delete me from your forum i will never say anything again ive lost my frnd who use to think that he have sfi his md reports were normal but his anxiety got worse and he killed himself shut me off now Bye and delete me from here
Guest omein26046
Posted
Where did you find him?ive seen that vdeo anc im still very scared from it
Guest
Posted
Ive also seen that videoof that guy who was claiming he had it..scariest thing...how do you know he is alive?
Guest omein26046
Posted
Where did you find him?