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
katie12043 NECKBONE
Edited
Than you so much for this. Ive entered stressful life period a few months ago and my sleep got worse. Few nights ago I stopped being able to sleep and started panicking I have FFI (I did not know regular insomnia can be so bad). My anxiety got really bad and then I found your post. I am determined to do a sleep study to check for sleep apnea. Thank you for your very encouraging words.
williamgal97 NECKBONE
Edited
my insomnia has be crushing me mentally and physically 😪 I hope I don't have this disease
nathaniel20826 williamgal97
Posted
I hope that you're doing well right now ?
pilar30447 NECKBONE
Edited
Neckbone- An impressive and comforting post. Very well thought out!!!!! Thank you for this. Hopefully people will trust they dont have Fatal Insomnia after reading your post.
I sleep average of 12 hours per week. 12 hours per WEEK... for 5 years...... living nightmare indeed. Now, I know menopause is an "unmentionable" topic but its the cause of immense suffering for many women. Changing neuro chemistry affects sleep center for those of us hardest hit by our hormonal losses. I'm completely ,utterly horrendously exhausted, angry, fed up, live in a foggy mess.Its aged me terribly!!!!! But if I am still here, sporadic fatal insomnia-free, then i wholly believe others with severe insomnia do not have this rare, rare, rare prion encephalitis. Horrific as severe chronic insomnia is, and horrific it absolutely is, it's (almost never) SFI, FFI. My heart is out to my fellow insomnia folks I totally relate to our shared problem. a horrendous issue indeed. But not a neuro degenerative disease.
wishing you well my exhausted friends.
Someformofhuman NECKBONE
Posted
Thank you for this writeup. I needed to find an outlet to share my thoughts and I found this post.
I am a Covid recovered 33yr male patient on November 20 2021. I am fully vaccinated and not been hospitalised. However I have not slept well since, everyday averaging around 4/5 hours of sleep. Before that, I always sleep for 6-7 hours a day, (6.5h is a sweet spot for me) gym and run 10km and cycle 100km every weekend. After recovering from covid I was so health anxious and that every bodily sensations I've felt must mean it's cancer or some underlying terminal illness. It all started back in Dec 2021; I kept checking my heart palpitations thinking that I've a heart problem. That kept me up all night. I've went for a blood, ECG and fecal test and everything was fine. In fact, the nurse said that I was a hallmark of a healthy fit individual. I still can run and cycle and do endurance activities without any problems. But the back of my head keeps telling me that I have a hidden issue which is so damn annoying, like a crying child in your head. I also had a long term GERD, but now it's all gone.
For months I kept Googling my symptoms from moles of my body to the headaches I feel and the sensations of numbness of my arms. Yes, these are all side-effects of long covid. Then I found this "unicorn" disease called FFI/SFI. I was soooo damn scared and that made me feel even more anxious. The problem with googling your symptoms is that they all overlap with other diseases and that doesn't mean you have them. I kept assuring myself that thought but the anxious feelings of uncertainty won't go away. I feel like crap and crying and I had not had good sleep in a long time. I am thinking of going for a sleep test.
Till today I am still suffering from sleep maintenance insomnia. Now, I sleep at 12 and I wake up at 4-5am EVERYDAY for no reason and that really affected my everyday life. Every night when I wake up the room environment is so dark and I constantly check my phone what time it was. When I saw it was 4:30am I feel even more frustrated. I am so damn tired, but thankfully throughout these 4 torturing months I still have the cognitive and mental capacity to be alert and sharp and still able to gym, talk to friends, hike long distances, road cycling and be alert... It's just my eyes are so damn tired.
May I know if anyone also experiences sleep maintenance insomnia? I am just worried and harbouring thoughts that this going to be my new way of life and its permanent - I want find a way to get rid of these catastrophic thoughts and be assured that I do not have some terminal illness and get back my 6.5 hours of sleep.
Nonetheless thank you for your assurance that I do not have this disease. I am able to fall a sleep easily but but wake up way too early. I do not think it's a hallmark of this unicorn disease.
Thank you all for reading my story. If I need a sleep specialist I will share this post to him/her as I much prefer to write than to speak. I feel much better after writing this down.
Mrcoolguy00 Someformofhuman
Edited
i hope you update us on how youre doing. what you described, im the exact same way. every bump, tick feeling, cough, twitch, EVERYTHING i feel i panic about. i had covid in april '21. wasnt vaxed yet. i had super mild symptoms but my anxiety caused me to have a bad experience. my covid lasted 2-3 days but the rest of my quarantine was awful because i was health conscious from that moment on. im triple vaxed and doing very well now, thanks to the anxiety medication i had to be put on. im no where in shape as you but im perfectly ok. im glad you dont believe you are the unicorn. as beautiful as they are, no one here is one. i would seek a sleep expert and ask what may have caused your change in sleep length. my new outlook though is "some sleep is better than no sleep". 4-5 hours is crummy compared to a gorgeous 6-7, but for the moment until you can get professional help, maybe that 4-5 isnt as horrible as it seems. i wish you the best and hope youre able to find longer fulfilling rest my friend.
HealthAnxiety NECKBONE
Posted
Thank you so much for this important and comforting post! I've been struggling against an episode of health anxiety where I'm convinced I have SFI, and these sleepless nights being terrified experiencing symptoms that match up while fully knowing in my rational brain that there's no way I have it have been very scary and rough.
I'm trying my best to avoid Googling symptoms obsessively and stay calm, but it's quite difficult. I decided to post after waking up after barely 2 hours again, sweating and overheated in my relatively cold room. I can't get back to sleep due to being so worked up, and I thought writing this out here might help me feel a little better and reassured.
My heart goes out to everyone else currently grappling with this fear! It's really hard to accept that we are not unicorns and that we are eventually going to be okay, but it is true! Please listen to this post, we're going to be alright.
I'd appreciate anyone reaching out to offer solidarity and a bit of reassurance, and I would be happy to talk to anyone else experiencing this fear to offer some empathy and comfort!
JackyO14 NECKBONE
Edited
I have all the symptoms you mentioned and I haven't slept in 6 days and I don't feel any exhaustion or tiredness.
Unfortunately, I can't make my own contribution here in relation to what you mentioned.