Why can't I sleep?

[epicclusterfuck]

I feel so unwell, haven't slept well in I don't know how long. Waking at 2,3,4,5 in the morning and can be awake for hours. I have autoimmune issues that seem to be multiplying - coeliac, hypothyroid, b12 injections, below average kidney function, tingling in feet and legs, tinnitus, aches and pains.

What is going on?

OMG, did I post in my sleep. I swear I could have written this OP!! I suffer from the same symptoms than you and I too am sooooo tired of sleeping so badly. I used to have such amazing deep sleep, went to sleep and woke up nice and refresh. Nowadays, I woke up with my tinnitus louder than my alarm clock (which I don't need anyway as always awake early) and pins and needles in my arms and feet that makes me wonder if I slept under the mattress rather than over!

Although not officially diagnosed as B12 deficient yet, I am pretty sure that this is what is causing all my symptoms and my GP is finally coming around this. In desperation, I started to inject myself two months ago and started to feel much better, but it only lasted about 10 days. I tried again, 3 injections, again better until again the symptoms came back.

I have been perimenopausal for some time now and a number of people have suggested the symptoms could be my hormones, even though I don't suffer from any of the common symptoms of the menopause but decided to give it a try. I've been on hrt for a month now, and so far, no improvement at all, if anything, it was worse at first. So back to B12 injections. If you are definitely deficient, one injection only is unlikely to make you better.

The problem as I am finding is that the symptoms could be caused by different issues and it then becomes a vicious circle. Are the symptoms worse because I don't sleep well, or do I not sleep well because of the condition? Last week, I had better days the day after I changed the patch, but the week before it was exactly the opposite. Saturday, I got up feeling almost normal, was so happy, got on with my morning, for the first time not feeling everything was a drag. By lunch time, the tingling, tinnitus and that overwhelming feeling drained was back.

I've started to keep a diary, including symptoms, sleep pattern (got the fitbit), whether my day was stressful, if I exercise (as I feel worse after I do, and now haven't for two weeks), and where I am with the hrt.

At least it helps a bit to know that other women experience exactly the same things because most of my friends going through the menopause talk about the sweats, hot flashes, anger busts but when I ask about tinnitus and pins and needles, they look at me like they have no idea what I'm talking about!

Thank you. Things are all bound up together - changes at work, people leaving, new manager, fewer hours. Ideally it would be time to move on but I feel too unwell to cope with a new job and I need to work as DH is unable to. It's a bit circular... I'm doing a course too so probably taken on too much and struggling with recentish bereavement, still to do admin work related to that.

I don't feel able to relax at all, any tips there would be good!

swingofthings sorry to hear you are the same! Feeling worse after exercise I definitely relate to, I have to limit walks to an hour max otherwise I need a long time to recover. That may be B12 or anaemia related, also my thyroid problems mean underlying problems with energy metabolism.

Not sure it is all menopause as I've been on HRT over 5 years. Too many variables!

Epic - it does sound like that could enough of a reason for your sleep to be so effected. More than enough of a reason. Any one of those would be enough.
Hopefully the dust will settle at work and it won't seem so bad (although the reduced hours aren't great - unless you can afford a cut?).
I totally know about feeling like you can't chance jobs. I'm in a very similar situation myself on that one.
Can you put your course on hold? And I'm really sorry about your bereavement.
Swing - sorry that you're not sleeping too. It sounds like you might be onto something with the b12 though. Out if interest, do the tablets not help if taken every day?

Dc are up.. Catch you later and hope you have a great day, as great as possible anyway.

Vit B12 deficiency is anemia. It is normally associated with low iron, but anemia is a general term to say that red blood cells are not working properly and that can be for a number of reasons, including low VitB12.

I don't think it's the hrt either. I'm only staying on it for another 2 months so that I am not being accused of not giving it a go, but deep inside, I've never believed perimenopause was the cause of my problems.

Can I ask. Do you find that the tinnitus is worse when the pins and needles are too? For me, the relationship is definite. The worse the P&N, the worse the tinnitus and the worse the exhaustion.

Coelic disease is well associated with low B12 deficiency. The normal treatment for low B12 is a loading dose of 6 injections over two weeks and then 1 every 3 months. That's the NHS practice, but many people find that this is not enough. Having one only doesn't make any sense (although like you, that's what my GP suggested initially!)

notabee, the problem with most people with Vit B12 deficiency, and certainly those with coeliac disease is that they can't absorb the vitamin. This is why the test for VitB12 is not reliable because it only test the full amount of VitB12 in the system rather than just the 'active' part, so you can end up with a normal level, but not able to absorb any of it. If the problem is not absorption but just low levels, say do to a strict vegetarian diet, tablets might help, however, if the issue is absorption, it won't as it will be broken down by the stomach (or wherever it is broken down). Injections means the full amount goes straight into the body.

Off to work to, another 8 hours to get through somehow, which is how it's been now for many months!

That's what I have for crohns and I have severe sleep issues. I always know when I am due another injection! Was on meds- sleeping tablets but even they weren't working....

On the sleep front specifically I think mindfulness can help. The concept is to accept things rather then fight it. It about focussing on our being rather than our thoughts. I did a bit of it and did find thst it helped but it takes quite some practice to learn to switch off. On one hand you have to follow a routine so need to think for thst but on the other it's about being kind to ourselves and accept that it's ok if it doesn't work. I do use deep breathing and find that this helps and has sent me back to sleep.

My problem is that even though my sleep doesn't appear so bad compared to some I get very little deep sleep so never feel refresh. I have colleagues who sleep 1/3 to 1/2 and get more deep sleep than me!

If suitable for the pain i find an electric heat pad makes me comfortable enough to sleep with a podcast

Just spoke to GP and she is going to prescribe earlier injection of B12 (last one was eight weeks ago) so should be able to collect that today and hopefully get an appointment with nurse to do it soon.

Can't put course on hold but then less hours at work means I can spend time on the project work though yes could use the money from more hours! Think health is more important right now though.

Hope everyone gets a good night's sleep tonight 😴

Oh and yes tinnitus and pins and needles are both worse than usual at the moment.

Just another tip re sleep hygiene type stuff- I have found that not checking the time when I wake up helps. Previous psychologist I was seeing recommended it. I know that I was wake up every 30-60 mins or so from about 2am to 6 when I get up for work, but I now take my watch off, move my phone away and turn my alarm clock towards the wall where I cant see it or reach it. My problem isnt falling asleep...I have iron deficiency anaemia and could fall asleep pretty much anywhere at any time (ish), but I cant sleep through. I feel much more rested now I dont look at the time- I must nod off again quicker.

Writing things down also defo helpful if you have a lot of stuff going on. I do this when I am nearing deadlines as I cant stop dreaming about weird stressful stuff otherwise.

I also sleep way better on non-work nights. I have paranoia about not waking up (as if!). I have 5 different alarms on 3 different devices now (yes overkill) and this gives me some reassurance that I can go back to sleep.

Not much help, I have never suffered from "proper" insomnia (apartfrom very acutely) so I dont pretend these will solve the issue but every little helps, etc.

Surprised that a cuppa helps as caffeine keeps you awake

Have you been exposed to ticks? Walked in the long grass? You don't need to remember being bitten.

Many of your symptoms could be attributed to Lyme Disease which is rapidly increasing through the population ( my teenage son has it). It's known as the great mimicker, as it mimics so many other conditions.

Have a look at this -

caudwelllyme.com/

Different things work for different people. I was always a great sleeper, but was hit hard with insomnia for no reason lately.

Anyway I battled through it, and did a bit of digging on the net. I was one of those who would wake up at three or four am and could NOT get back to sleep. I know others have it the other way around.

When it happens now I take a 250 magnesium tab with a small glass of milk and/or a few spoons of yogurt. My blood sugars were obviously low. Well it works (most of the time) for me. I hope that might help some of you.

An all night electric underblanket switched on low when you wake up really helps too.

I have had tick bites years ago but was tested for Lyme disease and it was negative. I have also taken magnesium previously so may try that again.

Lyme disease tests are very inaccurate in UK. Please don't rule it out.

This questionnaire can give you a more accurate diagnosis.

lymeontario.com/wp-content/uploads/2015/03/Horowitz-Questionnaire.pdf

indeed, lyme disease tests used by the NHS are reknown not to be accurate, however, it is a rare disease. Only two percent of tick bites will carry the disease so even if bitten, the chance of catching it is low. The symptoms are more or less exactly the same as b12 deficiency.

Where we live in the Highlands of Scotland 15percent of ticks are infected. In a Scout camp last year, 5 boys out of 25 came back showing symptoms of Lyme disease (bullseye rash) and were given antibiotics (my son included - although he now has chronic Lyme). Richmond Park is another Lyme hotspot.

I am pretty certain I was bitten by a tick two summers ago as we were walking in high grass (got lost) in a region also known for tick infestation. I didn't see the tick but only hours later there was redness and in the middle of it a tiny hole full of blood. This grew to a large bruise around it. I was aware to watch for the bull-eye rash and flu-like symptoms but I suffered from neither. I read that you can get an allergic reaction immediately from the bite, but the typical bull-eye rash that is sign of the disease doesn't normally show itself until at least three days following the bite. Still my GP has tested me and I'm awaiting the results (which are taking forever!!)

Derailing from the thread, but can I ask how is your son faring? Is he receiving any treatment? Is is affected with chronic symptoms despite antiboitic treatment? Is it because he didn't take a high enough dose for long enough? I read that it is very difficult to find a specialist who actually knows anything about Lyme Disease in the UK.

We've seen the Infectious Disease clinic who gave more antibiotics - another 2 weeks. But the life cycle of Lyme bacteria is 28 days so this wasn't enough. He was tested abroad -Armin labs and he is now receiving treatment from a private clinic in Edinburgh at great cost. He has received antibiotics sent over from Europe as the UK is well behind Europe and USA in expertise. The NHS has been useless as there treatment guidelines are out of date.

There is a Facebook group that offers a wealth of support called Lyme Disease UK. I strongly recommend you join.

Please don't be complacent and act now as you only have a small window for successful treatment.

All the best!

Good luck to your son, hope the treatments help him.

How are people doing? I've been awake since about 3.. so annoyed as actually slept well last night. I've started taking supplements again including magnesium and thought that helped. It was so good to get up and have some energy but looks like that was a one off. B12 jag tomorrow, well today, so will see if that helps.