fatigue is ruining my life

[babachic]

i'm so miserable

being investigated for stomach/bowel issues (sigmoidoscopy this week), but have had bloods checked several times over the past few months and all has come back normal, apart from low iron (which i've been told is linked likely to the stomach problems i've been having). i'm just so down, i can't function.

i've been signed off work the past week and can't get out of bed, i can last an hour in the morning and i have to go back to bed and sleep most of the day then am back in bed at 10pm exhausted, i have a 3 year old and i feel like i'm letting her down and missing so much with her - i don't even have the energy to sit on the floor and play with her! i can't go to the shops without coming home for a nap, if i walk to the play park with her that's me in bed the rest of the day. how is this normal? i keep being told it'll be the low iron but i'm not even classed as anaemic yet as it's not super low, and i can't take supplements right now because of the ongoing investigations into my tummy.

i'm on antidepressants and have been for about 2 years now, when i came off them i had tiredness (not as bad as this, this is like a total body shut down) and that's when i knew i needed to go back on but this is just aches all over my body and i can barely keep my eyes open. i need to have a lie down after i come out the shower so i put off having them because it makes me so tired afterwards

i'm only 25, i feel about 80 years older, i can't do anything, i can't live like this

My decline started after my first jag and has beeb amplified after the second jag and booster. Unlike you though everyone I've spoken to says they felt rough for a few weeks and then returned to their baseline. Not me. It's been a dreadful year (first jag in February)

My first one, in may, I had a mildly painful arm for a day. Can’t recall any fatigue or other symptoms. My second jab end of July, really sore arm for a week and my lymph nodes all swollen. Within a couple of weeks I found myself having to go to bed in the afternoon, I am very much not a day time napper! I actually had to give up my job a few weeks ago as I am so exhausted I couldn’t do it properly. My arms still aches today 4 months later in the same way it did after the jab. I can’t believe it isn’t connected. I’m getting loads of sleep, loads of rest, eating well, taking my supplements, exercising. I keep waiting to feel better and it’s just not happening. GP thinks nausea and headaches are migraines.

It could very well be low iron. I felt like death this year the iron levels the gp tested for came back normal, it was only when I got a private test my stores (ferritin levels) were in the toilet. A friend of mine had hers tested recently and was told, "a little on the low side, but nothing to worry about" when her hair was falling out due to low iron.

Can you start taking iron supplements after your procedure? See if yhag makes a difference?

I'm sorry you're having such a hard time OP.

This kind of chronic fatigue can be very difficult to diagnose I think. I'm in a similar situation.

Must be astonishingly hard with a small child. Is your child getting all of the free nursery house she is allowed? If you were willing to do that, and you think your child would be happy in nursery, it might give you some space to recover.

Sorry you’re feeling so bad op, that sounds really hard to deal with. I would double check that they have taken your vitamin D levels and push for them to test them if not. I felt similar to how you’re describing years ago, along with other symptoms (dry itchy skin, ulcers, sore eyes) and it took 18 months of different tests including thyroid function, checking for cancers etc. before they finally tested for vitamin D. My levels were virtually non existent and I had to be referred to the hospital to see a specialist and had high dose tablets prescribed.

Within a few weeks I started to feel so much better. I was shocked at how awful a simple vitamin deficiency could make me feel. I genuinely thought I was possibly dying with an undiagnosed condition for over a year and every day felt like wading through mud. Hopefully if it is this for you, it won’t be as long before it gets spotted!

Also just to say that you will need prescription strength vitamin D if your levels have dropped very low so it’s not something you can fix with supplements- they’re usually about 1000 units and I was given 40,000 units a day to start with to get the levels back up.

You need to get your thyroid checked too. And don’t be fobbed off with “it’s normal” for that or any other test. You need to be optimal - as in top of the range - not just anywhere within it. I feel shocking when my thyroid levels are at the lower end of normal, and can just about function when they’re in the top 25% of the normal range (or in the case of TSH the lower the better).

I had a private blood test early this year because I was permanently exhausted but my GP says bloods were fine. Turns out my vitamin D level was scraping the bottom of the NHS 'fine' level which in other countries would be classed as super low. I've been taking a high dose supplement ever since and feel soooooo much better. It has to be worth a try?

MaryandGerry & need2getfit That's interesting to hear. I have had (undiagnosed but I knew 90% it was) ME for years, managed to work PT then just after 1st vacc I had to be off work 2 weeks as the fatigue got way worse. After the 2nd vac I ended up unable to be in work more than 1 day a week for nearly 3 months. Before I only got that bad if I got bugs/viruses or major exertion like decorating. It pushed me to finally give in & get referred to my local ME/CFS service, who confirmed the diagnosis, as I was worried for the 1st time about not being able to work at all. I'm pro-vac but reading on ME forums this reaction is not uncommon. It seems to provoke the inflammation response which is already be over the top active in ME. I had considered using the Yellow Card drug side effect reporting scheme, as this sort of thing needs to be studied & recognised. Especially if people are going to be required to have vacc & boosters to keep certain jobs or travel. Of course it's not necessarily the cause for the OP but be aware it is something that a lot of people are experiencing.

Sounds almost exactly like what happened to me, including the stomach issues. I’m diagnosed now with ME/CFS- one of the therapists at my clinic says she suspects it’s actually long covid, but it can’t be proven one way or another now as I was never tested for covid when I first got ill.

Have the doctors given you any anti nausea tablets? I had some dissolvable ones that helped a bit. I’m slowly getting some strength and energy back with lots of rest and pacing

@Aldehyde I have something like CFS and the vaccine did this to me too. I'm having a really hard time deciding whether to have a second vaccine, as I've had long covid twice and reacted badly to the vaccine too.

@riotlady what kind of anti-nausea tablets do you have? I think that would really help a lot.

@Blueberry40 this chimes with my experience a lot too. I've noticed that GPs say "Normal no action required" when a level is at the very bottom of normal. I'm fortunate that I can read my test results online and then I know if it is really normal or actually just scraping through at the lowest possible level. I'm currenly extremely low in iodine and trying to sort that out.

@babachic is there any chance that you could get your actual blood test results from the online interface in your GP surgery? If we took a look at them, we might be able to figure out if you are "low/normal" in something and help you figure out what you need. If you don't currently have access to them you can request it and the surgery should allow you to have access.

@StrongLegs Sorry to hear that, it is a dilemma when you don't know the short/mid/longterm consequences of either option. Personally I'm going to see if I can regain pre-vacc functioning levels & if sustained I'll consider the booster. However not at this point. For now at least my job doesn't mandate the booster, but I'm sure that will change as it has for some travel rules. Then it's a double bind of 'lose my job' or 'possibly get so ill I can't do any job for rest of my days'. Not a choice I relish!

On another point for @babachic , I also had lifelong anaemia (hello mostly veggie diet, tea drinking & heavy periods). Your blood ferritin levels should be 50 as a min & pref much higher. This needs a specific ferritin test as it's not the same as haemoglobin. Ferritin measures the amount of stored iron in your liver & you can have low levels even if haem seems ok. My ME/CFS service recc minimum of 50, but it can go over 100 safely (just too high may mean another condition, so check first before chugging iron supplements). Also chelated iron is way easier on the digestive system, a bit more cost but worth it to avoid more GI upset.

@StrongLegs I take prochlorperazine, I have it as a tablet that dissolves between my lip and gum so I don’t have to try and swallow if I’m throwing up.

@Aldehyde yes I totally get your dilemma. I'm in the same situation. It's really challenging to know which is the good option.

@riotlady crikey. Sounds as though it's good that you have those then.

@MaryAndGerryLivingInDerry

My decline started after my first jag and has beeb amplified after the second jag and booster. Unlike you though everyone I've spoken to says they felt rough for a few weeks and then returned to their baseline. Not me. It's been a dreadful year (first jag in February)

My first one, in may, I had a mildly painful arm for a day. Can’t recall any fatigue or other symptoms. My second jab end of July, really sore arm for a week and my lymph nodes all swollen. Within a couple of weeks I found myself having to go to bed in the afternoon, I am very much not a day time napper! I actually had to give up my job a few weeks ago as I am so exhausted I couldn’t do it properly. My arms still aches today 4 months later in the same way it did after the jab. I can’t believe it isn’t connected. I’m getting loads of sleep, loads of rest, eating well, taking my supplements, exercising. I keep waiting to feel better and it’s just not happening. GP thinks nausea and headaches are migraines.

Sorry to hear this as well,

I've been off sick since august and just cannot see how I can return (I only worked part time but have 2 v small dc).

@Aldehyde

MaryandGerry & need2getfit That's interesting to hear. I have had (undiagnosed but I knew 90% it was) ME for years, managed to work PT then just after 1st vacc I had to be off work 2 weeks as the fatigue got way worse. After the 2nd vac I ended up unable to be in work more than 1 day a week for nearly 3 months. Before I only got that bad if I got bugs/viruses or major exertion like decorating. It pushed me to finally give in & get referred to my local ME/CFS service, who confirmed the diagnosis, as I was worried for the 1st time about not being able to work at all. I'm pro-vac but reading on ME forums this reaction is not uncommon. It seems to provoke the inflammation response which is already be over the top active in ME. I had considered using the Yellow Card drug side effect reporting scheme, as this sort of thing needs to be studied & recognised. Especially if people are going to be required to have vacc & boosters to keep certain jobs or travel. Of course it's not necessarily the cause for the OP but be aware it is something that a lot of people are experiencing.

Sorry to hear this.

I was in bed for 5 weeks after the first vaccine and then got signed off work 2 months after the second (august) and I'm still off. I've had the booster in the meantime.

I just cannot see how I will manage returning to work. Some days I am just floored. I only worked part time but have two very small dc and I think I will only return if I can reduce my hours further. Even that's at a push.

I suffer from fibromyalgia but I am sure I have ME as well. I've never pushed for a diagnosis as they say chronic fatigue is part of the fibro. But I may have to do this now.

sorry for disappearing! been a long, tiring week. so sorry to hear so many people have been feeling the same and for such a long time for some, but glad there's some ways of helping/managing it

speaking to my boss tomorrow to discuss a possible return to work over the next few weeks so will see how that goes, i have days where i feel okay (like today) but spent the weekend in bed and couldn't keep my eyes open after a 20 minute walk in the park last week

@StrongLegs spoke to my GP today and she just said my blood showed my iron levels were 21 which she said was 'intermediate' - no idea if that's high or low!

forgot to answer some questions

• i had covid in may 2021 and it's probably been since then (give or take a couple of months) that the tiredness has been a problem

• i've had both vaccines, my second one floored me with flu like symptoms for 2 weeks in mid october

I have no idea what your GP is measuring as 21 - but if it's "iron" it needs to be between 10-15, so I suspect it's ferritin, which I'm getting sick of hearing is so woefully misunderstood.

I'm not surprised you're on your knees. My haematologist (yes, really) said it needs to be nearer 100 for women of child bearing years, and definitely over 50.

The ridiculous ranges used is 13 to 150 - which now with 20 years of hindsight is criminal.

So, with all the usual caveats, I reckon you need some serious iron supplements.

@lborgia thank you, i had no idea. she just said iron levels but i imagine it's ferritin as you say - makes more sense. i'm picking up liquid iron later today, my hospital procedures have been delayed so makes sense to just take it and see how i get on. she said 21 is intermediate but if it's between 13-150 then 21 definitely doesn't seem intermediate to me!

Yes, but the old fashioned way of looking at it is anywhere between 12-50, in which case I suppose it could be perceived as intermediate... although I wouldn't want them in charge of any statistics Have you taken liquid iron before? Needs to be something really strong. Good luck!

Also sounds a bit like Addison’s disease, might be worth having your cortisol and adrenals checked?

@babachic how are you now ? Xx i have been like this for nearly 2 years 😩 x

I had fibromyalgia and cfs diagnosis for 7 years, and it turned out to be a gut health issue. Id had several courses of antibiotics and then stomach acid inhibitors so my bad bacteria multiplied. Oil of oregano softgels for a couple of weeks and probiotics or kefir for life are just good maintenance for everyone. It may resolve or take the edge off your symptoms.

if your gut health is poor, you may develop a food sensitivity, gluten and dairy are the most common. Cutting these out for two weeks will be enough to let you know if you are affected.