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.
my insomnia has be crushing me mentally and physically 😪 I hope I don't have this disease
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 .
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.
How are you doing now ?
I hope that you're doing well right now ?
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.
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.
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.
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.
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.
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!
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.
Dieux, merci beaucoup pour cela, je n’ai même pas regardé, j’ai juste vu la miniature d’une vidéo sur YouTube à ce sujet et j’étais tellement bouleversé, je suis retourné dessus en espérant un certain soulagement, une sorte de réfutation à cette idée que je pourrais avoir une maladie absurde dont je n’avais jamais entendu parler auparavant, et il n’y en avait aucune.
Ces gens sont tellement irresponsables dans leur quête de créer du « contenu » que cela me rend malade qu’ils soumettent même la moindre parcelle de leur audience à cette terreur cauchemardesque, ce qui semble être une possibilité presque certaine qu’ils ne survivraient pas à leurs trente ans.
C’est comme à la loterie, vous savez ? « Cette chose très improbable pourrait tout à coup m’arriver. »