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.

Do you have an online account for your GP (e.g. Patient Access)? You should be able to see your blood test results there if you do. If you can, please post here the EXACT results (I.e. not the doctor's comment "acceptable levels" but the numbers) for things like Vitamin D, ferritin, folate, B12, TSH, etc.

Do you take any supplements? As a vegetarian, at a minimum I'd say you want vitamin D (everyone should take it) and B12, but I can recommend a complete one if you'd like, with iodine, selenium, etc. However, DON'T start taking any now if you're not already, since you're probably about to go through further blood tests and don't want them to skew your results and cover up what could be a diagnosis.

Also take a look into B12 deficiency and pernicious anaemia symptoms - mine showed up as a teenager and led to significant fatigue. Even with treatment (B12 injections plus accompanying supplements), I still need more sleep than your average person. It can be an auto-immune issue that goes hand in hand with thyroid issues and low levels of other vitamins and minerals, too (they're not absorbed/used by the body in the right way).

You have my full sympathy and I hope you get some answers really soon.

If you do get blood tests and don't have the online system, you should be able to phone up for the numbers or ask for a print off. Come back to us here and we'll do our best to help if your GP doesn't. Good luck!

@desperateexhausted,

Haven't read the replies yet, but just wanted to say that you seriously need to be referred to a sleep clinic. That's obviously not normal. They have a great one in London... think it's in St Thomas's, but not sure.

I have a sleep apnea disorder. I sleep alone, so didn't know. I was waking up 15 times an hour. I now use a Cpap machine. At the sleep clinic (you are
filmed overnight) there were young people, skinny people, all kinds of people. (Be aware that if it's over a certain level your driving license will he removed)

You might just need to retain your body so you're sleeping at night rather than during the day.

It could also be sleep apnea, which I've suffered from, and I had very similar symptoms to you at the time.

I've also been fine (once I lost weight) and then about 2 years ago it started happening again, but this time it turned out that I had dangerously low B12 levels as well as very low ferritin, iron, vit D and calcium. I'm a meat eater but can't absorb it. I'm now on injections for life and they help a bit.

Yeah doesn’t sound like carbon monoxide which is good. Seems like the sleep apnoea or narcolepsy ideas are worth following up. It sounds dreadful for you.

Underactive Thyroid? Had debilitating tiredness and could not work for 2 years prior to diagnosis and meds

@lljkk

Am I the only insomniac reading this with ?

Are you joking?

This isn’t something to envy.

I’m also surprised at the number of people baffled that your blood tests are clear. This is what many of us with ME go through as there simply are no tests.

OP, I would make sure they’ve tested for things that aren’t standard.
Vitamin D
Thyroid antibodies and free T4, not just TSH
C-Reactive protein
All your hormone levels

For me, my fatigue has improved significantly since folate and vitamin D deficiencies were picked up and treated but it’s still bad. Tests all normal too and it’s soul destroying.

The fact that OP doesn’t have a diagnosis doesn’t mean she’s not trying FFS. And you don’t need to have a diagnosis for reasonable adjustments to be made - it’s about the symptoms you’re experiencing and the impact of them.

Have your work referred you to occupational health yet?

My ferritin was 2 and my GP still refused to do anything other than give me the same tablets I'd already been on for years without any change, so I had to keep pushing.

Saying that, it's taken almost 10 years to get to a point that I've finally been able to get a referral to a haematologist and asked for iron infusion.

I've had 2 so far and although I'm still tired I'm hoping it will show an improvement given time.

Low iron??? Totally caused this. Maybe you need a transfusion? If you’re not eating you’re not getting iron

This would be a good clinic to be referred to if you are anywhere near London

www.rbht.nhs.uk/our-services/lung/sleep-and-ventilation/sleep-centres-royal-brompton-and-harefield-hospitals

Hope it went well this morning OP.

Hey everyone, just popping back to update. So I had my appointment (it was a video call) and I was expressing my point so passionately I was practically shouting down the phone at the poor woman! Anyway, she said she strongly suspects fibromyalgia or chronic fatigue and will do me a referral to a neurologist or a sleep clinic (she’s looking at available services near me). She actually seemed to believe me when I said I’m 100% certain this isn’t mental health related and agreed to go down the physical route which was honestly just a dream come true. Thank you so much everyone for your advice here and your PMs, I feel much more positive about relaying this news to my boss on Monday.

Good luck and all the best to you, OP, I hope your employers will reward your honesty as they should.

Oh well done, that's a brilliant update. I hope you get your appt - and some solutions - very soon.

Just wanted to suggest a blood test for coeliac as that could be underlying cause of IBS symptoms and also deficiencies such as Vit D, b12, iron etc also frequently found with underactive thyroid.

Great news. Keep us updated.

Good to see your update, OP, and I’m delighted the private GP has been so helpful, and signposted a future diagnosis.

I have to say, you have done amazingly well to keep going this long.

You must be a great asset at work, even if they are frustrated at the moment. Reading what you have been putting up with, I just take my hat off to you that you’ve maintained a professional career.

I truly hope you are feeling better soon. 👍🏻

Very pleased OP.
Posters being dismissed by GP's or Consultants drives me wild.

I get it a lot. I have to fight all the time. I'm dismissed. Re Type 1 Diabetic, HRT, frozen shoulder, etc, etc. I always end up seeing a nice Consultant who always apologises for the years I've been dismissed and how badly my case has been handled. Always.

It's great to hear you're being seen; make sure you're passed around to get a diagnosis. To help with the process, you could consider getting a fitness wearable device; that will track the amount of sleep and wake-ups, so you can use the information in discussions.

Just in case something is affecting your blood pressure, you can also get a heart rate monitor and do readings a few times per day (always do 2, 5 min apart; repeat at least morning and evening) write a note next to the results about how you're feeling. It will add to the picture.

So I had my appointment (it was a video call) and I was expressing my point so passionately I was practically shouting down the phone at the poor woman! Anyway, she said she strongly suspects fibromyalgia or chronic fatigue and will do me a referral to a neurologist or a sleep clinic (she’s looking at available services near me).

Excellent outcome, OP - and it might be worth talking to a few of the relevant patient organisations to get their feedback on proposed referrals as they can have good intelligence on this from their patient and carer communities.

That degree of exhaustion has to have a medical component. Common factors are low Vit D and low iron.

NHS has a disgracefully high threshold of what they consider 'normal' thyroid levels which would be considered very low in most other developed countries. It's worth getting a private set of tests done for this. Though there would usually be additional issues such as weak nails, thinning hair and eyebrows, husky voice etc.

In your position I'd buy some Floradix liquid iron, as it doesn't cause constipation, and take that every day. Also Vit D spray (eg DLux by BetterYou.) Go for the stronger dose. Avoid tablets on both of these. Vit D tabvlets are known to be ineffective. The spray works far better.

You could also try cutting out dairy as some people develop a dairy allergy after a virus and that can cause severe anaemia.

Glad she’s referring you. Do you have other symptoms? I saw lots of people suggesting CFS but that goes hand in hand with things like feeling like you have the flu, feeling really unwell after doing something and pain, not just over whelming fatigue. I hope they get to the bottom of it for you

Number one, its not your fault. Number two, you need to get to the bottom of it. Don’t be fobbed of by your GP! It could be many things, chronic fatigue, b12 deficiency (gps usually use the test which checks the total b12 in your body not the active amount!!! You need to go back and keep going back until you get answers!!

This doesn’t sound normal at all. I work 8-5/6pm as a teacher, with additional hours planning and doing other non-teaching duties at school. I manage to eat healthily with proper meals. I don’t fall asleep on the job.

I read your update and I hope the GP schedules a blood test to check for things like low iron, low b12 and thyroid. Are you a vegetarian? Do you eat enough calories? If it’s none of these then it could be ME/CFS.

OP please please see a GP and ask for a thyroid test. A lot of what you’ve said has resonated with me (I nearly failed my degree because of these symptoms which were due to an undiagnosed thyroid disorder -under active).

What made me go to the GP in the end was one Saturday eve in Winter I went to bed, didn’t set an alarm, woke up, it was dark and 4:00 on the clock. I assumed it was the middle of the night but it was 4pm Sunday! I didn’t know what was wrong and it took nearly 2 years for them to diagnose me (all the while it was getting worse, vomiting, hair coming out in clumps..) I was fobbed off as being overstressed with Uni work until a locum requested a thyroid test.

It might not be this, extreme fatigue can be a symptom of many things. Please call the GP. I have other auto-immune conditions now from being undiagnosed for so long. I don’t want to worry you but I wish I’d heard the same thing when I didn’t know what was wrong.