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
omein26046 NECKBONE
Posted
come on moderator come on man
omein26046
Posted
welldone moderator welldone
omein26046 NECKBONE
Posted
this is my last reply Love your life and dont believe on everything which is on the internet if u use internet use it for great things and for educational purposes but dont look for ur symptoms and the horrible terminal illnesses which is mentioned on the internet ive done my research of three years of Fatal insomnia and i come to that point that this is fake cause my friend read about this on the internet and he make him ill and he didnot have this and md were saying that he is fine but he strongly believe that he had it pet and mris every medical report was fine but the impact was so strong that he committed sucide because he thinks that he will never sleep again Rip james thats my friends name
but i wont let this happen to anybody f and f and i or s and f and i is fake And all of its patients who are dead in so called documentaries are still alive thank u
and u know why it doesnt even exist
omein26046 NECKBONE
Posted
come on moderator these are my last posts come on man
NECKBONE
Posted
I think the discussion has run off the rails. Obviously, there is such a thing as the disease we are posting about here. The intent of the original post however is not to suggest that it doesn't exist, but rather appeal to the common sense of and appease the many, many people who post in this forum asking if they have the disease or worse, suggest they already know they have it. Fact is, the disease in question should be the very last stone un-turned for people in their search for the causes of their insomnia. Unfortunately for many, it is the first place they look after doing some googling and finding other fools (like I once was) on discussion boards talking about the disease as if it is as common as the flu.
Rather than worry yourself making observations that have no basis in medical science, focus your efforts instead on the things that can make a difference in you sleep.
omein26046 NECKBONE
Posted
but i was just trying to tell them the truth like prophet jesus pbuh said :
"they want you to mind with your own bussiness if you tell them the truth they will treat u with hate and stones "
ive learned my lesson im quite now God bless Ameen
michelle70460 NECKBONE
Posted
Well said, neckbone, well said. As i have even mentioned, yes, the disease is real but due to it's extreme rarity that in itself makes it almost non existent.
Nasteha85 NECKBONE
Posted
Thank you ! people come on these sites and act like fools, not to mention they scare others in the process. I never even heard of SFI/FFI until I came on this site. I understand people are scared, I'm going through hell with my sleep fear; however, I'm very cognizant of what I say, so as to not cause further fear in others when seeking help on support sites.
Mrcoolguy00 NECKBONE
Edited
Finding this post was a Godsend. Im 30 and new to the insomnia game and have been dealing with it for two months now. I also have extreme anxiety and horrible acid reflux. That magical combination has caused me to have some crappy insomnia. As per usual, i went down the rabbit hole of sleep problems and, like everyone else, fell into this rare disease. I was terrified. Crushed. My hope of living a full life was crushed. I first got my insomnia after staying up entirely too late on night building a new computer. For some reason, that sparked my inability to fall asleep easily. Ever since then, I've had the cliche insomniacs "normal nights" of sleep. I truly started to feel like hope was lost. Then, as i was on google trying to find a way to prove to myself that i dont have this awful disease curse, i found a title saying "read me you dont have it". I was naturally drawn to your post, neckbone, and had my teeth sunk in as if it were a good book. I read your post 3 times, cried some, then continued on to the rest of the discussion. Seeing everyones replies on trying to help people like me realize i dont have this made me feel quite a bit better. For me, and im sure everyone else with intense anxiety, CONSTANTLY being CONSTANTLY reassured that youre helps calm me down. It helps bring me out of the awful sink hole that is anxiety. Being told im ok, i dont have some wild rare disease, what im going through is absolutely without a shadow of a doubt normal and manageable helps bring me back to the light. Im not cured of this idea like I just took a miracle pill to make it all go away, but i absolutely will say that reading this, and having this now on hand to reference when i need, is going to help me believe that i truly am ok and am not a unicorn lol. People have said thank you for posting this in a way, i believe, as "thank you for clearing up something making people feel crazy. Thank you for posting good information". Im saying thank you in a different way. Im saying thank you for saving me from myself. i dont want to bring too much religion into this because i dont know the rules or policy on that, but i truly believe i stumbled upon your post for a reason. i believe i was meant to see this to help me let go of this heinous idea that i have something or that my problems are far worst than anyone else in the world. so, neckbone, i may not be cured yet lol, but i thank you for slapping me in the face the way i needed. insomnia is normal, its not going to kill me, and ill be ok.
nathaniel20826 Mrcoolguy00
Posted
How are you doing now ?
Mrcoolguy00 nathaniel20826
Posted
sorry for being 8 months late to reply to you. update on myself, im doing great! currently cant sleep, lol, but this is the first insomnia night ive had in a long time. dealing with my anxiety was the true cure. i had to be put on a low dose anxiety pill to save my mind from running wild. i no longer believe i have this disease. its truly been deleted from my mind. well, i say that but i ended up on this forum again. i dont think i have it. i truly dont. i bookmarked this page so i could refer to neckbones post anytime i needed to. reading it when i need to helps me just stay grounded. again i dont think i have it but i wanted to have a sliiiight refresher for myself since i cant sleep currently and i know my dormant anxiety (thanks to my medicine) might try and awaken itself if i dont stay on top of things. i also wanted to check up on others to see if anyone came back to give an update on their lives and if they have defeated the idea of this mess in their head. i wanted to come back and use my experiences to try and help any new comers if they are feeling lost and hopeless like we all once were.
Natasha1908 NECKBONE
Edited
Thank you for your post. I can't lie, it's hard to remember that the chances of actually having this disease are 1 in 100,000,000 according to many sites, when you have every one of the symptoms listed! A doctor I saw hadn't even heard of the disease which I thought would be comforting for me, but it was actually the opposite. I'm doing my best to remember that chronic insomnia is quite common and treatable and can really wreak havoc on my mind and body. The longer I dwell on it, the longer it will last. Praying we all get the rest we need to live long, healthy lives!
nathaniel20826 Natasha1908
Posted
Please ma'am , tell me that you are well as of the moment...I can absolutely imagine the sheer terror of going through this horrible phase as I am going through it as of the moment as well and I am utterly tired and mentally strived.
katherine00192 NECKBONE
Posted
thank you for trying to reassure, and i really want to believe it BUT i can not sleep more than 2-3 hours with 7.5mg zopiclone or 15mg diazepam. Surely theres something wrong?
shaun99999 NECKBONE
Edited
this is making me feel better in such a rough time please if you see this reach out to me im having the worse time of my life at the moment and because ive stupidly read about that horrid disease i feel my self having symptoms, i know its ridiculous but i cant get my head out of it.
nathaniel20826 shaun99999
Posted
I am with you on this , Shaun. It was a major mistake for me to go and search about this horrid disease all these years later despite knowing how ridiculous it is , ever since I looked into it a few days back my life turned downhill .
Mrcoolguy00 shaun99999
Posted
if you ever come back and see this let me know youre ok. not being able to sleep sucks. its a downward spiral of emotions and thoughts and problems if insomnia persists without giving you a break. but i promise you its not this awful disease. im living proof like neckbone and a few others. something else is causing the insomnia. could be a range of things. mine is anxiety and caffeine. i love coffee and sodas. if i drink to many in a week, my heart acts funny, it increases my anxiety, and it messes with my sleep. putting pressure on sleep is the worst thing we can do. we wanna have a good nights rest so desperately that we subconsciously fixate on it so much that it becomes our conscious number one thought. by that time, all heck has broke loose. i havent mastered it in the slightest bit, but accepting the bad nights of sleep when they happen will ABSOLUTELY help ease the mind about sleep in general. its not easy, but youre not alone, and you dont have it. i promise you dont.