View Full Version : Convinced of SFI
Hello,
I need some help as I'm convinced I'm dying.
Here is a list of my symptoms
Very poor sleep ( always slept really well)
When I wake up in the morning I don't want to get up and if my eyes are closed either my shoulder, finger or leg jolt.
No sense of feeling hungry
Complete lack of motivation
Whenever I try to do something I get a creepy-crawlies feeling in my calves or feels like someone is grabbing my knees
I sweat more than normal
At night I get a thumping sound in my ears
In bright sunlight I have pinpoint pupils
I am on 20 mg of citalopram have been for years and on 15mg of mitazapine.
My Dr says this is all anxiety, I've had 2 MRI scans and all good, bloods done and low free testotorone, vitamin d and zinc.
Please can someone here help, has anyone had these symptoms as I really scared I'm dying. This has been going on for 4 months now
babybert23
26-06-18, 11:49
hey pat firstly take deep breaths and calm thoughts, the fact your still here after 4 months must speak for itself in its own right
I keep telling myself that, but with all the symptoms I've got it's scarring me
babybert23
26-06-18, 12:01
ive just sent you a private message rather than take up chat room space
Bump.
---------- Post added at 10:32 ---------- Previous post was at 09:55 ----------
All these symptoms I have match SFI, so I'm extremely scared I'm going to die an horrible death. Please help and has anyone else with anxiety had this cluster of symptoms
All these symptoms I have match SFI, so I'm extremely scared I'm going to die an horrible death.
Living like you're dying is worse IMO :weep: Especially from some impossibly rare illness that only a handful in history have had.
You have diagnosed anxiety and are going through a rough time. I hope you feel better soon.
Positive thoughts
Are all the symptoms I'm getting anxiety symptoms, because I've been ok on citalopram for years plus I've only usually had 1 symptom not a cluster.
Are all the symptoms I'm getting anxiety symptoms, because I've been ok on citalopram for years plus I've only usually had 1 symptom not a cluster.
Meds can be and are fickle. What works for one may not for another and sometimes a med just craps out. My daughter has gone through that and now is going through a rough time again as she cross tapers over to Prozac. Speak with your doctor. Maybe you can get a few Xanax until they figure out what's going to work for you.
Positive thoughts
I was given some diazapem but don't want to take it as I don't want to get hooked on it. I take the mitazapine for sleep but it did work, but I'm not sure if it is now. I had it years ago and it knckede out
Has noone had any of my symptoms?
I've posted on here before about this and am no more convinced I have SFI, yes I know it's extremely rare, but here are a list of my symptoms.
Poor sleep, either not sleeping or early waking for over 4 months. Yes I get the odd day I get a good sleep, but I can't catch up on lost sleep.
When I'm awake and my eyes are closed in the morning my shoulder or my leg or my finger jerks, bit of I keep shaking my leg it doesn't happen.
I sweat a lot even if it's not hot.
My pupils in sunlight are tiny, not normal constriction, smaller
Strange sensations in my left leg
All of these are symptoms of SFI, my GP says it's just anxiety, but I'm really worried time is running out for me now.
Please can anyone whose had these symptoms and it is just anxiety let me know.
convinced I have SFI, yes I know it's extremely rare, but..........
You have a bad case of "Yeah, but" disease. You cannot argue effectively you have an illness that has affected only a handful of people in history.
Positive thoughts
nomorepanic
03-07-18, 13:18
Hi
This is just a courtesy reply to let you know that your thread was merged with another of your threads.
Please when posting on similar topics add it onto your previous post rather than starting a new one.
It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
I keep telling myself that I can't have it, but then I have another bad night and my motivation has completely gone.
I don’t even know what SFI disease is. Sorry.
Is it not just that you’re not sleeping very well? Lots of people with anxiety don’t sleep well.
If your gp is concerned it’s anxiety, what are you doing to help yourself with that?
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nomorepanic
03-07-18, 16:11
I don’t even know what SFI disease is. Sorry.
sporadic fatal insomnia and very rare
I see! All these things to be scared of. I can see why your sleep is a mess.
None of us want to die a horrible death, even people that don’t suffer from anxiety would rather not die horribly.
You’ve had lots of tests and they are clear, which is brilliant. It’s the anxiety sufferers nature to then look at things the tests can miss, or may have missed. It’s now down to you to deal with your reaction.
Do you mind telling me what your bedtime routine is?
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My bedtime routine is go to bed at 9 unless I finish late from work have a camomile tea watch a bit of TV then turn it off. I've always watched TV in bed as when I went through SSRI withdrawal I hated the quiet. This has been going on for 4 months now, I always used to sleep well, now since a traumatic event in my life well it's traumatic to me, the day after the event I woke up 7 times and haven't been the same since.
This has been going on for 4 months now, I always used to sleep well, now since a traumatic event in my life well it's traumatic to me, the day after the event I woke up 7 times and haven't been the same since.
And that tells you what?
Positive thoughts
And that tells you what?
Positive thoughts
Exactly.
How about trying to listen to some relaxation techniques before sleep? Maybe have a bath too.
Stop focusing on the waking up. I wake up 2-4 times a night, I used to sleep straight through too. Now I don’t, and that’s pretty normal. Once you stop focusing on it you’ll probably sleep much better.
Are you getting any help to cope with the traumatic event?
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It should tell me it's down to what happened, but I've been through worse in my life and never lost sleep over it.
I tried relaxation but it didn't work, I've tried acupuncture it that didn't work. I've had counselling but in the past that's worked but not this time some things have got better I'm not as withdrawn as I was now, and my stomach pains have gone. But I've still got lots wrong with meas I've mentioned.
I also suffer from SFI fear syndrome, it is very popular among anxiety warriors.
How do you mean relaxation doesn’t work? What did you try and how long did you try it for?
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I tried it for months and it didn't relax me.
I'm going to the drs today as I know I'm not right haven't been for four months.
I used to have anxiety years ago, but I would only have one symptom that would last for months and I wouldn't loose sleep over it.
Good luck at the doctor. Maybe they can suggest some relaxation techniques that do work, I think you just need to find the right one.
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I was supposed to be taking my youngest son to his pip appeal today, but I've got it adjourned as he's ill, just as well I did as I'm not down as his representative even though the DWP made me his appointee
Dr just upper and her words "happy pills".
Iwas not impressed and I told her I'm not depressed
And then what did she say?
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She said here's your prescription goodbye.
Really??
We’ll complain if you’re unhappy. Are you going to take the pills?
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I'm not sure they will help to be honest,they upped them to 30mg and no change. I had to take a melatonin to sleep last night. I've never had to resort to meds to help me sleep even during discontinuation syndrome.
Dr has given me zopione, it worked for 2 nights now I've just had another night of no sleep. Really worried I'm the unluckiest person in the world.
Just an update, I have now been referred to UCLH and the UK national prion clinic. I am really really scared now, I hope they tell me I have nothing wrong, but I'm still not sleeping properly, I got just 4 hours last night, and the night before.
I get nights where I don't sleep at all, the twitching Inthe mornings has stopped. I have been given temazapem today by the Dr, has anyone has these before?
I was given quitiapine and it kept me up all night, I was too scared to take the nortriptyline as thought it might do the same.
Really worried I'm the unluckiest person in the world.
And you would be, if indeed you had this unbelievably rare illness. I think you'd be in really, really bad shape by now being that this fear and thread started over two months ago.
Let us know what you find out!
Positive thoughts
I pray they say it's all in my head,
AMomentofClarity
07-09-18, 18:39
Just an update, I have now been referred to UCLH and the UK national prion clinic.
How hard did you have to push to get this?!?! I’m shocked that you’re being referred to a specialist for a disease that has affected only a handful of people in world history when all of your “symptoms” match anxiety precisely.
As far as the symptoms you describe:
Poor sleep - Had it
leg jerks - Had it
I sweat a lot even if it's not hot -Had it
My pupils in sunlight are tiny, not normal constriction, smaller - Never checked/noticed
Strange sensations in my left leg - Had it
I emailed the Dr in uclh to try and get some advice. And with what I got back I went to my GP whom then spoke to the Dr in uclh.
I'm not talking about poor sleep, my sleep has been getting worse, now I don't sleep at all. I took zopiclone and it worked for 2 days only. I take mitazapine and I still don't sleep.
I've even tried alcohol but that's not working.
I really really hope I'm wrong, but I have all the symptoms plus more.
This insomnia came on suddenly, I've always slept well, but now I don't sleep. Obviously from what my GP told the specialist he thinks it's something to investigate.
I'm no Dr and had never heard of SFI I only came across it whilst googling for herbal sleep aids.
I go for long 8 mile walks, but it doesn't wear me out where as before it did.
I've had 2 MRI scans, paid for by myself, but the Dr at uclh says it doesn't usually show up on MRI scans, so how they diagnosis it I don't know.
All I know is I am very scared
Another night with no sleep
The temazapem has stopped working after a few nights.
I can hardly see. I even tried a glass of hot milk and nothing.
I have a load of symptoms and nothing is getting better, just worse. Of to gp this morning.
I am even more convinced I have SFI now. I don't want to think that,but all my symptoms match.
If I have I will be the unluckiest man in the world.
I pray every night now. I just want to be me again
Had my appointment, they wrote down all of my symptoms and did lots of tests, and took a blood sample to check for the gene.
I now find it extremely difficult to go to sleep and when I do, I wake up early.
Maximum sleep this week is 4 hours. I've had 2 nights I didn't sleep at all. The only thing that helps me sleep is alcohol and that doesn't always help.
Blood test takes 12 weeks
Hi I have the same problem was wondering if you’re ok now and if the test results came back ok?
Hi I have the same problem was wondering if you’re ok now and if the test results came back ok?
The OP hasn't been on since the last post. Either all is well or she's in the recent medical journals. Being that there have been only around two dozen cases in medical history, I think you can safely assume which ;)
Positive thoughts
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