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Please read me before posting about SFI/FFI: YOU DO NOT HAVE IT

Posted , 32 users are following.

NECKBONE
NECKBONE

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

72 Replies

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  • robinmk4l
    robinmk4l NECKBONE

    Edited

    Thank you! Also worth adding, it might be called fatal INSOMNIA but its first and foremost a severe degenerative neurological disease and a type of CJD which causes sooo many more symptoms then just insomnia. In fact, in the sporadic version of FI, insomnia is not even a common complaint! So if you dont also have severe cognitive decline, ataxia, dubble vision, dysautonomia, problems walking etc you can rest assure that you do not have SFI 😃

    • girl02520
      girl02520 robinmk4l

      Posted

      It's a neurological disorder and a prion disorder but it is NOT CJD. CJD is its own disease and is not related to FFI, however they are both prion disorders. Its good to keep the information factual so people don't get confused.

  • lily65668
    lily65668 NECKBONE

    Posted

    Wonderful post, neckbone. I enjoyed reading it. But you do realise, don't you, that it won't make a blind bit of difference?

    I campaigned unsuccessfully for a long time on these boards to stop people claiming they had these unicorn diseases - with a tiny amount of authority too, as I am actually a former neuro nurse, as well as a long-term insomniac. And needless to say, I never saw a single case of either of the above diseases. I don't think I'd even heard of them in my nursing days, so rare are they, though I knew about other prion diseases. Incidentally, I can't even mention the dreaded initials. The automatic moderator has me on immediate block if I mention them... while allowing frantically anxious teens to bandy the subject about and compare symptoms at will! LOL, as I believe they say.

    I'm sorry to hear you're another insomniac. I went through 40 years of poor sleep but, like you, worked around it quite successfully. Fortunately, I started sleeping like a baby again as soon as I retired from paid employment at age 66, and it hardly ever troubles me now.

    Just one small point. I'm not sure whether you and I have had this conversation before, but do you know about SSM (sleep state misperception)? Although I've only recently come across the expression, I figured out that I had this decades ago. This is when you quite distinctly "remember" having been awake all night but partners or roommates confirm that you'd actually had several periods of deep sleep, often involving snoring. Clinical sleep studies also turn up the same phenomenon quite often.

    I'm not saying our insomnia is entirely imaginary. I know only too well that it isn't. However, totally sleepless nights are probably much rarer than we think, and even a couple of one-hour periods of deep sleep snatched during an otherwise sleepless night can be quite adequate to keep us ticking over the next day. I suspect that partly explains how people like you and me go on for decades functioning quite adequately with what seems like intractable insomnia.

    Anyway, I'm very reassured to see that someone is continuing the good work of trying to reassure young men that they're not going to die of lack of sleep. I'm afraid I've largely given up the struggle!

  • angela55814
    angela55814 NECKBONE

    Posted

    So well said Neckbone . Your sleep issues are so similar to what I have had this past 5yrs and I have adopted the same attitude as you have. Some nights I sleep some nights I dont SO WHAT!!! It is insomnia NOT SFI.

    I now do not spend hours worrying fretting lamenting about whether I am going to sleep. If I sleep great if I dont so what!! I find with this attitude I sleep better.

    Everyone out there who thinks they have SFI GET IT OUT OF YOUR HEAD HONESTLY YOU DONT HAVE IT

  • Gareth51625
    Gareth51625 NECKBONE

    Posted

    Great post neckbone. You'll probably remember me contacting you back in 2017 about my insomnia and I also worried I had this terrible disease and well 17 months on I'm still here and able to communicate just fine. I've not had anything else happen to me that would give a warning sign that I have SFI or FFI. These prion diseases progress quickly so surely I would be having balance problems and cognitive issues by now. I think the majority of people posting that they "definitely" have it are trolls trying to worry people who visit this section of the forum.

    • lily65668
      lily65668 Gareth51625

      Posted

      Hi Gareth,

      Great to see former S F I "sufferers" like you and neckbone posting. Failure to come back and post again after an appreciable time gives the impression to more nervous posters that the original poster died of the disease.

      I agree that some posters may be trolls, though I've always given most of them the benefit of the doubt. The one obvious troll (to me anyway) was unfortunately saying he was a nurse and confirming that he, as well as all the others, really did have the disease.

    • Gareth51625
      Gareth51625 lily65668

      Posted

      Hi Lily. I still have varying degrees of insomnia most nights which I attribute to a very overactive mind but more recently I've also practiced sleep restriction - sometimes staying up all night to prove to myself that loss of sleep isn't terrible and basically teach my brain to not care that I don't sleep that night - it eases sleep anxiety. Then the following night I tend to sleep better than usual from being more tired. If I had SFI I still wouldn't sleep well. I think some people on here could consider deliberate sleep restriction sometimes or some people would call it deprivation lol. It does put the mind at ease when you do get a longer sleep the night after.

  • NECKBONE
    NECKBONE

    Posted

    Great to see everyone and I do recognize all of the usernames. I haven't been around in awhile due to "life stuff" but just dropped back in to see how the conversation was going. It looks like the SFI posts have shifted into overdrive in the last year and I had to make this rant. I wish I could shake people out of worrying about something so ridiculous as this, but I know where they have been and I understand how it happens. The memory loss, the anxiety, the loss of cognition; nobody thinks it can just be only lack of sleep, so they search for something much worse and they are sure to find SFI online, at which point it quickly becomes an ingrained belief that they have it, even as unbelievably remote as the possibility is that they actually do have it.

    And Lily, I cannot believe (well I suppose I can) that someone would act as a medical professional and come on here to "confirm" cases. Such people are truly the scum that you only find every once in a while on the internet.

    I'm going to let this be all I post for now but I am coming back soon for Part II, dedicated to the other great delusion that is driving people deeper into the insomnia nightmare: Sleeping Pills

    • lily65668
      lily65668 NECKBONE

      Posted

      Neckbone, per your last para - no I can't believe it either! The individual in question claimed to be an RN (US style) but I'm far from convinced that he was. He was around on various sleep boards for quite a while - mainly accusing me of not having been a nurse because I was saying posters couldn't possibly have S F I - but I haven't seen him recently. Maybe he'll emerge again if he reads this thread. I can still remember the ID he was using.

  • derek76
    derek76 NECKBONE

    Posted

    You are fortunate if you are able to get enough sleep to fuel your life during your waking hours, I we could all do that we would not have a problem.

    • NECKBONE
      NECKBONE derek76

      Posted

      I'm sorry, but there is nothing fortunate about it and I'll thank you not to insinuate that I've had an easier time of it than you or that your problem is worse than what I've overcome. It's not.

      This is the great insomnia delusion (of which the SFI rubbish is a part):

      "My problem is different/worse than others. I cannot function like this. This person is saying that he got through insomnia but his problem COULDN'T have been as terrible as MINE."

      It was. You have to resolve yourself to just go out and do it anyway. What other choice do you have?

    • derek76
      derek76 NECKBONE

      Posted

      I don't have SFI. I have Fluoroquinolone Toxicity Syndrome that presents with a whole range of problems including insomnia.

      You said that you get enough sleep in waking time so how else can one interpret that plus that you've overcome.

    • catherinnosleep
      catherinnosleep derek76

      Posted

      you have Fluoroquinolone Toxicity Syndrome?

      like that tattoo artist on youtube got from taking cipro for a uti?

      did you see that story?

      How did you get Fluoroquinolone Toxicity diagnosed?

    • derek76
      derek76 catherinnosleep

      Posted

      I did not see about the tattoo artist but have heard of many victims of the drugs. If you go to the EMA web site (European medicines authority) you can watch the June 2018 conference with sufferers from around the world telling their stories. I was first prescribed them when I had prostatitis and in hospital to have my aortic valve replaced. First thing on leaving hospital I went to my GP with tendonitis

      Twice later I was prescribed the drugs and stopped them on day two again with tendonitis. It was not until some time later that more of the effects hit me when other drugs were prescribed..

      I have had various neuropathies suggested and even CMT but it is only now that Fluoroquinolone Toxicity is even considered.

    • NECKBONE
      NECKBONE derek76

      Posted

      How do the doctors go about diagnosing that syndrome?

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