I am soooooooo tired and I don't know how to fix it.

[Topoftherange]

Admittedly, I have been really quite stressed for a long time and it's getting worse and sadly not currently something 'fixable' but everything combined is having such a detrimental effect on my energy levels and I just want to sleep all the time.

I am 53 next month and have been in peri for many years. I also have endometriosis, adenomyosis, IBS, adhd and a history of depression and anxiety so I know that I struggle but no matter what I do to help myself I just can not fix this overwhelming exhaustion and it is really punching the life out of me.

I go to bed exhausted, my sleep is either really deep and satisfying or the complete opposite and restless as hell (although, tbh it has been the latter for a while now). I wake every day with high anxiety for the day ahead, I do not wake refreshed at all and feel like a zombie until around midday. I will get a few hours in the early afternoon when I may feel a little more human-like then crash again towards the end of the day (I only work a few hours a week and then it's not until the afternoon). I constantly battle the urge to fall into a deep sleep around 7pm, if I do this then I can't sleep when I do go to bed but often I am just too knackered to fight it so that becomes a no-win situation.

What can I do? Obviously everything is a million times worse at this time of year but do try to be healthy, I eat as well as I can (although can be a bit difficult with daily digestive issues), make sure I avoid any known trigger foods, I have protein with every meal and I only drink water. I walk for around an hour a day (split into two smaller walks) with my dog over fields and woodland and have to really push myself most days as I feel wobbly and drained. I am not overweight. I don't take any meds which could leave me so tired, in fact I currently take no meds only co-codamol or paracetamol a few times a month for my endo/adeno pain and peppermint oil sometimes for my gut issues. I try to combat my stress with daily relaxation techniques, hypnotherapy and have just finished my last counselling session (I have had quite a bit of counselling over the last few years) but none of this helps.

I was anaemic for many years but following iron infusions and a gynae op to stop my bleeding 4 years ago my iron levels have now returned to normal, including ferritin which had previously been at 3 for years. I had a full blood panel taken at the end of summer last year and all results returned as normal. Normal levels for iron, vitamin D, B12, folate, FBC etc. Thyroid levels are all normal too.

I honestly don't know what else I can do for myself to combat this exhaustion? Alongside the restrictions of my current chronic health issues I am finding this exhaustion and malaise just too much.

Any suggestions? I know there is little I can do about some of my chronic health issues and certainly not with my source of current stress sadly (my mum is terminally ill with advanced dementia) but I just want to be able to get through the day without desperately wanting to go to bed.

Your GP might be able to refer you to Sleepstation, I think it can be free for someone on a low income.

I actually had a gaatroscope a month ago. They found a 1cm type 1 hiatus hernia but told me no treatment necessary as it's unlikely to cause symptoms this small!

I'm still waiting to hear back from my gastroenterologist but if I do manage to get an appointment with her I will ask about taking a ppi although I do have some famotidine at home so could try that and see if it's helps.

Thank you so much for your reply.

I have often wondered if my B12 levels were having any affect on my body and symptoms. I do display a lot of the symptoms of a b12 deficiency but I have always placed my trust in the NHS/GP but it was only a few years ago that I signed up for a Patient access account and was shocked that my ferritin levels had been below 6 for years. My GP would just tell me that I was a bit low on iron and would prescribe tablets which wrecked my stomach so she just left me to it, no suggestion of infusions etc. The only reason I got an infusion was because my gynae wouldn't perform my op whilst the levels were so low. So I do now wonder about my other results and have lost my faith in the NHS a little bit.

I have looked and it doesn't seem as though they have given ranges at any time for folate or vitamin d. I've attached the results and you can see that my folate has been falling for a couple of years.

I joined a few b12 support groups but as they were all discussing self injecting I withdraw as I have a needle phobia and was concerned about ordering from overseas and not knowing what I might be injecting myself with. How can you guarantee it's safety? I would get DH to inject me if I thought they were completely safe. Did you suffer any initial side effects from injecting?
Or should I just take folate supplements and ask for retest bloods in a few months? I find it all confusing tbh with the brain fog and exhaustion, I struggle to make any major decisions without panic and self doubt.

I do often wonder about thyroid issues too. Again all come back within range but I do have so many of the symptoms. My grandfather had hyperthyroidism, mum is borderline and my sister has had a lot of issues these last few years with hypothyroidism which they could not control and then she discovered she had a parathyroid tumour.

Ugh! There is so much it could be and it's all so confusing.

Could be, I have had Covid a couple of times over the last few years. I ended up in bed for a week last April with a rotten flu/covid thing.

However, everything turned pear shaped anyhow in 2020 - MIL died as a result of the lockdown delaying her cancer treatment, my mum's Alzheimer's was getting worse which was (is still) very stressful, I lost my beloved dog and perimenopause had hit around 2019 so it's hard to know exactly what could be the instigator to how I am feeling right now. Maybe it's a combination of things which I somehow need to tackle individually?

Bless you, it sounds like you’re struggling. Brain fog is a neurological symptom and can become permanent if not treated - if it’s caused by a B12 deficiency only injections can reverse that damage. This is why we get so frustrated with the drs - they go for tablets or the starvation dose of injections… if you want to be cynical, you might be interested to know that “Big pharma” make HUGE profits on the tablets but virtually nothing on injections.

I buy my B12 from German pharmacies - so it’s the German equivalent of buying from Boots online essentially. If you could buy B12 to inject from Boots, would you worry about doing so (beyond the needle phobia I mean - the buying something to inject would you trust Boots)? It’s essentially just like doing that (they are all regulated etc). I found that actually I am better with needles by doing it myself weirdly - I think it’s because I’m in control of it.

I genuinely think the injections saved my life (untreated you can die from a B12 deficiency) and I’m a big advocate for them now. I too was a little wary at first, but I was so desperate I figured I had nothing to lose and everything to gain. Note that your first injection must be under musical supervision in case of the unlikely event of anaphylactic shock. If you can’t persuade your doctor to trial you with an injection, you can pay to have one done at a clinic. Then you can do tour own after. If no other option, you could always do it in the car park of A&E so you are where you need to be if you do react. It is extremely rare, but you wouldn’t want to be home alone if you’re that 1 in 10 million!

For them to work, you need to be taking 5mg folic acid daily alongside them. If your level is low, until it builds up, take the folic acid 1 hour before the injection.

You then ideally want the other cofactors - a daily vitamin B complex (no more than 10mg of B6 daily so check how much is in it). Take this for 4 months then a 2 month break. If you find one without B6 in it no break is needed. Magnesium, vitamin D (plus K2 to make sure the calcium goes to your teeth and bones and not clog your arteries) - 10,000iu daily in a soft gel capsule with olive oil carrier (I get mine from eBay). Iron supplements if your levels are low (or monitor it regularly to check it’s not dropping).

It’s a bit overwhelming, but so many of them require other vitamins to be at the right level to work it’s important to take them all.

Oh and your question about side effects - I got the B12 skin for a while. It’s a detox vitamin so you often break out in spots to start with. But after a few weeks that calms down. Some people find they’re exhausted to start with as their body is working hard repairing the damage, some find a new lease of energy. Depending on which it is for you determines when you should do your injection - if it gives you energy, do it at the start of your day. If it makes you tired, just before bed is perfect.

@Greedybilly could be right. A couple of years ago, I had norovirus, Covid, flu twice, acute tonsillitis, laryngitis between September and February. They all cleared up by Spring but I had to take time off work (self employed - so easy to do but no money coming in!) because I was so shattered. It took a couple of months of doing nothing, and when I went back to work on an intensive project, within two days I had laryngitis again.

Looking back, I am sure it was post-viral fatigue, either from Covid or flu. You may actually have to rest, OP, like you would if you broke a leg. There is a massive difference, IME, between sleeping or cslumping on the sofa all the time, feeling constantly stressed and guilty that you should be doing other things, and doing the same while thinking: I must do this if I want to recover. The acceptance mindset is part of the healing process.

Go back to your doctor and ask to try methylphenidate-hydrochloride XL, (XL means slow release.) Brand names include Concerta, Ritalin, Medikinet, Equasym, Delmosart, Xaggitin, Atenza, and Affenid.

I was lucky. My doctor started me on this and it suited me from the start. It's a totally different medicine from Elvanse. For a while it was in incredibly short supply/unavailable, which could be why your doctor didn't suggest you try it. But even NHS now seems to get hold of the Xaggitin brand name version.

Elvanse is an amphetamine but methylphenidate acts (in my very limited understanding) like SSRIs in that it blocks the absorption of noradrenaline and dopamine so they stay in the brain longer. The noradrenaline would help keep you awake and the dopamine helps keep you motivated and focused on doing things, bypassing that horrible ADHD firewall between intending to do something and actually doing it. It's not a magic wand. But it does make a difference.

Use this as your bargaining tool. GPs don't like prescribing ADHD meds for some obscure reason. But if you tell them your exhaustion is so great that you will need to give up caring for your mother, then the state would have to care for her, which would cost far far more than your daily dose of Ritalin. If they quibble about giving it to you, tell them this.

OP, you say your stomach is really bad at the moment. That can be a sign of long Covid and gut health is also related to ADHD.
Can you add some probiotic every day. I used to drink Actimel though I didn't like that it either had refined sugar in (not good for gut health) or sweeteners (also not great for gut health.) But a small amount of live yoghurt, fruity kefir or a kombucha drink everyday - or, if you can face it (I can't) kimchi or sauerkraut. You only need a bit each day.

And cut out all refined sugar and refined carbs. Up the protein. Apparently a Keto diet is good for ADHD. It doesn't suit me in its most extreme form, but I have increased protein and rely mainly on unprocessed carbs as much as possible. There is a big difference in energy levels.

And how you feel could well be a combination of all these things: post viral, ADHD, gut health off kilter, high stress, mild vitamin and iron deficiencies. Work on all of them.

When you meditate, have you tried the very deep breathing forms of meditation? They are apparently very helpful if you are stressed.

Thank you again, that's really helpful. I do overthink things a lot and yes, if the B12 shots were available to purchase from somewhere like Boots I'd have fewer concerns, it's all down to the fear of the unknown I suppose and going it alone without the support of the NHS/GP which is our default here in the UK isn't it?

I will spend this weekend really looking into B12 issues and seeing what I can do for myself. I do need to take it seriously, I know it can cause irreversible damage if not treated properly and promptly.

I am on a quest to find a magnesium supplement which doesn't mess with my already f'd up digestive system, I have tried a couple of the supposedly gentler forms like glycinate but I still ended up with a bad tummy.

I would love to take a few months off but I have only just returned to some work helping my sister with her cleaning business and I really have to see my parents throughout the week as my dad is struggling with his mental health due to my mum's Alzheimer's. If I could run away and hide out for a couple of months I am sure I could start to feel much better but life gets in the way! I will just have to work on other things to help until mum goes into a care home and we can try to get dad in a better place mentally.

I have been looking into finding a dairy free kefir, both my DH and friend drink the dairy version and say it has improved their gut health.

I don't have a sweet tooth so eat very little sweet stuff and no upf due to my gut issues. I can't go keto because I can not tolerate diary, eggs, red meat or chicken so a keto diet without these things would be very restrictive and I already have a low BMI and I can not afford to eat lots of the protein I can tolerate as good quality meat is so expensive these days.

I will try to add in anything that I don't already do and within my budget.

What were your b12 and iron results exactly, the nhs has a very low pass rate so you can be poorly but still told you're fine

Good luck! I found a Facebook group called B12 Wake Up, which is run by the B12 Society, to be extremely helpful. They have lots of files to explain everything, plus a list of safe places to buy your B12 from. They were working on a training program for UK GP’s - it was at the final stage ready for sign off a couple of years back. I don’t know whether that ever got rolled out but I’ve certainly not seen a change in drs attitudes. There’s also a book by Dr Chandy called Vitamin B12 Deficiency in clinical practice. I found that really useful. I’ve attempted to add a picture showing the cover of the book and you can see that I really did buy it as well! It might take a while for the photo to be reviewed.

They all come back with a 'normal' stays on my records.

Thank you

don't take them telling you they're "normal" as meaning you should feel fine! That was our earlier point, the bottom end of normal is very low and not enough for many people to feel fine, particularly if a couple of things are low and/or you have other conditions as well.

I think 5.2 is only just normal, plus it was a year ago. If you did have T2 diabetes then perhaps metformin instead of diet control

Magnesium l threonate is the only one that doesn't upset my stomach - i take it just before bed

I also order b12 from Germany and it's all good although do have to get husband to do the injections

Lots of people need a ferritin level closer to 100 to feel well. Check out the Iron Protocol Facebook group.

I'm another self-micro-rewarder and I find it really works. Little treats or skives throughout the day or maybe work on one of my secret plans. I've managed to reprogramme my internal monologue as well and it's mostly onside these days instead of constantly undermining me and slagging me off like it used to. Most days when I go to bed I can think of a few good things that happened in the day (or bad things that didn't happen), serves as positive reinforcement. I've got nobody else cheerleading for me so I do it for myself. Have you got anyone to talk to?

I'll get it checked again. I hope never to go on metformin as I know it would wreck my already terrible digestive system.

I will look into that, thank you.

Thanks.