Sacked because I can’t stop sleeping

[desperateexhausted]

Posting here for traffic and NC because I’m ashamed and furious with myself.

So I haven’t been sacked but if I don’t get a handle on the problem I’m heading that way. I have a job with regular daytime hours (no horrible shift patterns, no very early starts or late finishes) and I can’t manage it.

A week of regular 9-6 work absolutely exhausts me to the point that I have in the past fallen asleep in my clothes the moment I got home, not eaten any dinner and slept through til the next morning several times a week. Some weekends I sleep for almost the entire 48 hours, emerging only to use the toilet or microwave a ready meal. I’ve had countless sick days (probably over 20) in the last year because I’m sometimes so tired that I can’t see straight, I feel nauseous and dizzy when I sit up and the fatigue is so overwhelming I feel like I’m being crushed.

I also sometimes (often) sleep through the morning and simply don’t turn up at work. I have two alarm clocks going off right next to my head and they don’t wake me, particularly if I’ve had a night of insomnia (which I also, somewhat ironically) suffer from. This has been going on since my teenage years (I’m now in my 30s) and affected every single job I’ve had - I’ve had probations extended, been sacked from freelance contracts, and now I’m on very thin ice at work. I’m outwardly a professional and successful person but I can barely hold down a job because I cannot stop sleeping and I’m at my wits end. Chronic fatigue has been mentioned by a previous doctor but wasn’t followed up for reasons beyond my control.

I don’t know what to do. I don’t want to live like this. I’m not exaggerating when I say it’s ruining my life and will ruin it even more if I lose my job (which, frankly, I deserve to). I don’t want special treatment from work, I know how ridiculous it sounds as a grown adult to say ‘sorry I slept through my alarm) 20 odd times a year. I would chop off a limb for an official diagnosis but every blood test I’ve had for the obvious possible reasons comes back completely clear (and I’ve had a lot of blood tests for this over the years).

Has anyone experienced similar and found a solution? It’s getting to the point that I’m terrified every time I go to bed on a weeknight that I won’t wake up when I need to, which in turn keeps me awake worrying, which then disrupts my sleep even further. Any advice would be very, very gratefully received.

It’s mad your GP hasn’t looked into this further. You def need to go back and push for more tests - can you see a different one in the practice or go private?
. And tell your manager what you’re doing.

It does seem like you need a second opinion to rule out other things before a CFS/ME diagnosis, I had tests for all sorts of things before they confirmed it for me.

Not a doctor, but CFS is diagnosis of exclusion, so once other things have been ruled out, CFS comes into frame.

Problem is, GP won’t refer OP for a first opinion, because all the tests are coming back clear.

But to be referred to a CFS unit you don’t need to test positive for anything. So it would make sense for her request being referred direct.

If they feel it’s narcolepsy not CFS then they report that to the GP and OP will be referred on.

You should be referred to the sleep clinic. They are definitely still doing referrals as I’ve been referred during covid. Do you sleep alone? If not can you ask your partner if you snore badly or dose it sound like you stop breathing? That’s what triggered my referral when my DH noticed I sounded like I wasn’t breathing at night.Classic signs of sleep apnea, so is falling asleep and being exhausted during the day. I have other health conditions which cause chronic fatigue and had been putting my excess sleeping down to this but the sleep clinic think there is something else going on. My results are inconclusive for sleep apnea so they are going to be doing a more in-depth investigation apparently, not sure what that entails yet.

I honestly couldn’t attempt to hold down a job right now. I’m lucky to be a sahm with a DH working from home otherwise I couldn’t cope.

I’d be going back to you go and demanding a referral to the sleep clinic. Go into face book at look at some of the autoimmune support groups, they are absolutely fantastic at pointing people in the right direction and telling you what to be asking.

Sounds awful and very worrying desperateexhausted, feeling like you do is just not normal.

I would suggest that you are honest with your employers and inform them that you have made countless GP appointments regarding the issues and have received no help and that you are now going to go Private to access help. Do you have Private Medical Cover with your employer?

It's dreadful that your GP has just dismissed you so out of hand over this.

@desperateexhausted I’ve pm’d you

Thing is there really is a multitude of things it could be, I think the length of time it's been going on for is important.

See your GP and insist on a referral to the Sleep Service who will know how to investigate better than your GP is

You don't have to rely on your GP. Places like medichecks.com you can buy all sorts of blood tests. You pay a bit more to get them done by a proper nurse (at a local NHS clinic normally) and then they're just as accurate.

@desperateexhausted

You can search for NHS sleep clinics here and ask your go for a referral

www.nhs.uk/Service-Search/other-services/Sleep%20medicine/LocationSearch/682

I'm not trying to alarm you but...we laughed a lot about someone at work who used to randomly fall asleep. It turned out they had a brain tumour. You need to get this sorted even if you need to camp out at your doctors.

I have sleep apnoea and I was like this. I used to drop my kids off at school and sleep most of the day before picking them up. I once got woken up by them ringing me at half 3 to see where I was!
I am overweight which doesn't help, but it definitely can affect anyone. They said even if I lost weight I would still have it.
I have a CPAP machine now and it's changed my life, I work full time and manage to do the school run lol

I think you need a blood test at least to rule out several deficiencies etc. Are you depressed by any chance? Or cited it be a chronic fatigue type problem maybe post virus?? Or could it be sleep apnea? Many people that can't stay awake have this xx

You sound exactly like me. I was eventually diagnosed with bipolar disorder and a circadian rhythm disorder. Unable to tell which came first but I’ve struggled with sleep my whole life. I’m on medication that helps stabilise my mood and also sedates me so that I get to sleep at a reasonable hour...most of the time. There’s still times where I experience what you’re describing. But I function much bette these days due to the meds.

@m0therofdragons

My gp did bloods and all was fine then I called back because I still had symptoms (exhaustion) and a different (female) dr said she wasn’t happy she had all the tests she wanted. More bloods showed I am not anaemic but my blood cells are so small they can’t absorb enough iron - my ferritin levels are 6 and should be at least 12 to 100 ish although women with periods are rarely higher than 75. My periods aren’t especially heavy these days. I’m flagging at the moment so back on iron tablets. When my ferritin levels were at 24 i felt amazing. B12 deficiency also has this kind of impact xx

My ferritin was 6 in Feb. Getting tested again next week.

I couldn't believe how tired and out of breath I felt.

I'm hoping mine goes above 12 at least

Any chance of requesting flexible working so you're not worrying about your alarm waking you and then you'll sleep better?

Perhaps a sleep specialist is the way to go, have sleep studies been suggested.

Oh I see someone's mentioned Medichecks I used them for a few fertility/TTC things and thought they were excellent.

You sound like my DH! Do you drive? The final straw was when DH fell asleep at the wheel and crashed. He was then referred to the sleep clinic. It was found that he has many jerky movements through the night which disturbed his sleep. I was aware of some of this but not the full extent. He was prescribed melatonin to help his sleep pattern,and told to avoid alcohol. He also had some other health issues discovered which had contributed to his tiredness.

I think you need a referral to a sleep clinic asap.

Agree with going private. Your GP is being gatekeeper.

I suggest doing some research to find NHS consultants specializing in sleep disorders, that also do private work.

Book a consultation with them and then see if they can refer you into their NHS clinic. That should get the ball rolling.

OP you sound very similar to my sister who has suffered with tiredness for many years and got absolutely stonewalled by the NHS. Basically told it was all in her head and "probably connected to your existing mental health problems" because it's easier to fob someone off and blame them than refer them, right?

She eventually went private and is now diagnosed with CFS and fibromyalgia. She also has IBS and her consultant said that he often sees the two conditions present in the same patient but no causal link has yet been found.

She now works part time, mainly from home, but tax credits, PIP and mobility allowance have helped a lot.

There is a management plan and her energy levels have bounced back from their lowest - at the time she was diagnosed she literally couldn't walk unaided (and she's always been physically fit.)

Really strongly suggest you go private and push for a diagnosis. Something is wrong and you need help.

I was like this for a long time.
My thyroid was out of kilter but then it still didn't improve. Minor iron problem but iron liquid make me so so ill (tablets were even worse). Had Vit D tested and low but not too low but the consultant said -try vit D. Took liquid vitamin D in orange juice and a large multi vitamin within a week I was normal. Stopped the liquid vitamin D within 4 days I was back to sleeping despite the multivitamin. Took it again and within a week I was normal. I stopped the multivitamin at one point but not Vitamin D and I stayed normal so I think it is the Vitamin D 100%.

In your case -I'd demand a referral but in the meantime -take a good multivitamin and liquid vit D in orange juice -every day for 2 weeks and see if it has an impact.

If you're working from home, are you getting exercise?
May sound counter-intuitive, but there's been a program on radio4 recently about the benefits of early morning walks - one of the benefits being improved sleep patterns.
I agree with PPs that you need to press your GP for a referral, but it may be worth giving this a listen/try in the meantime:

Just one Thing - Michael Mosley
www.bbc.co.uk/programmes/m000v3fz

Have you heard of a condition called hypersomnia? I really think it's worth looking into.

I would ask for a referral to a sleep disorder clinic - there's something not right here.

Look up sleep disorders like this one and push for a sleep study rarediseases.org/rare-diseases/non-24-hour-sleep-wake-disorder/

I was like this before I started taking thyroxine for my hypothyroidism. I genuinely spent all weekend every weekend asleep.
Doesn’t sound like that’s the case though if you’ve had lots of blood tests. Hope you get some answers soon OP, it’s sounds a miserable way to live