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

Sympathies op.
I have M.E/CFS & fibromyalgia and sometimes it takes all my strength just to stand up to go to the bathroom. It’s miserable feeling like this and no way could I manage with a 3 year old!

Are they also going to do an endoscopy at some point so they can biopsy to check for coeliac disease? With your exhaustion, low iron and stomach problems it’s a possibility and doesn’t always show on blood tests.

I hope you get some answers (& some treatment!) soon

thank you @HelloKittySkittles and sorry to hear you're struggling too

i have no idea what will happen after the sigmoidoscopy, but will be pushing for all tests to find out exactly what is 'wrong' and what i can do to feel like myself again, not this shell of a person just so fed up!

You need a referral to someone who can formally diagnose cfs (by excluding everything else that could be causing it). This isn’t usually done by a GP ime. It sounds like it’s having a huge impact on your life-I’m so sorry. If it is confirmed as cfs (once everything else has properly been excluded) then you can be referred to your local nhs cfs service who can help you manage it. Either way, you shouldn’t have to face this on your own 💐💐

@MrsDoraDumble just feel that i'm being totally fobbed off, before i had stomach issues i had contacted my GP about the tiredness and lack of energy and was told my thyroid etc are all fine but to take more vitamin c - that was back in July and no change, if anything it's getting worse. i have been run down the past few weeks and obviously have some underlying issues but just feel that they think i'm being dramatic

honestly just miserable tbh

Ask a family member to be an advocate for you in this to help your energy reserves. Keep a diary for a usual 24 hours so they can see how much you need to sleep. Ask for an appt with a different GP, take your advocate and your diary and strongly request a referral for further investigation. You can do this op!

How are your Vitamin D levels?When mine get too low, I get so tired, and get pains in my knees.

Have you any other symptoms?
Have you had your cortisol checked?

Low iron can make you feel horrendous even without being anaemic. If you can't have iron tablets push for an infusion.

@thegcatsmother no idea, but all my tests have come back normal bar the iron levels so i assume they must be okay? just no idea what's going on

@Summerofcontent i just feel totally run down - exhausted, nausea, headaches, stomach pains, aches all over 

@RavingAnnie i will ask for one. when i got my blood results the doctor said my levels were low but not low enough to give me anything so i should find my own supplements, but now can't take them because of this procedure on friday

Have you had a virus in the past that floored you? Or a virus that dragged on? Could be chronic fatigue syndrome but, my experience was glandular fever mid 20’s that left me just as you describe. The doc said the exhaustion could last 2 years but it continued.
About 7 years later I had a 3rd baby. Three months later, swollen weak joints hands. Knees, etc. Bloods all normal.
It took 8 more years before inflammation in eyes had a good GPRefer me to rheumatology. There the consultant diagnosed inflammatory arthritis and other auto immune conditions. He said the numerous ‘normal’ blood tests were common in inflammatory arthritis, they showed normal inflammatory markers when the disease is active. He took a medical family history, my gran had rheumatoid and he said I had the genetic base, all it needed was a virus to knock my immune system. I started treatment and got my life back. Within 4 weeks I could walk 3 miles, before I struggled to get out of bed,.

Sorry for the long history - it may be irrelevant to you babachic but it may trigger a thought for you or someone else.

Not all your symptoms fit, but have you been tested for helicobacter? They can do a blood test. I recently finished treatment for a gastric ulcer and I'm shocked how much more energy I have.

Sorry if none of this is helpful - do you - have adequate sleep

• eat enough fresh food including fibre and regular meals
• get 10-15 mins daylight every day
• have low stress levels
• get adequate rest

Also try a good quality multi vitamin and spatone sachets or Feroglbin (though it sounds you really need the ferrous fumurate liquid) and a probiotic. I'd also get tested for coeliac asap and if its not that opt for a low gluten diet anyway as you may be gluten sensitive but not intolerant. I find milk can be irritating- I vary between different alternatives such as coconut and oat or lactose free, to be gentler on my system.

You may do all these things but even if CFS is diagnosed you would probably find these things are suggested as alternative approaches anyway. Also have a look at the Spoons approach to managing energy.

I'm on immune supppressing medication and these are things that help my energy levels.

Have you had covid? I had all those symptoms for over a year after it.

I was so similar at your age, except I didn’t have any dc (you’re doing amazing). Everyone took the piss out of me, saying I was lazy ( I believed them), long story short turns out I have an auto immune disease, the “physical” symptoms didn’t materialise until about 20 years later. I think although no proof, it started with glandular fever as looking back it started then. It was awful, made worse by thinking it was indeed because I must be lazy 😢. Sorry to ask this (I don’t usually like people being asked this) but can you afford private blood tests? I was falling asleep everywhere, I could have put myself in danger looking back, I wanted to sleep all the time. I really hope you get some help, I now have 2 young dc and am holding down a stressful job, I couldn’t have done that without treatment, you’re not being dramatic or lazy please ask for another opinion if you aren’t being listened to and maybe print out a summary as you have here, I find it easier to do that.

@lotsofdogshere

Have you had a virus in the past that floored you? Or a virus that dragged on? Could be chronic fatigue syndrome but, my experience was glandular fever mid 20’s that left me just as you describe. The doc said the exhaustion could last 2 years but it continued. About 7 years later I had a 3rd baby. Three months later, swollen weak joints hands. Knees, etc. Bloods all normal. It took 8 more years before inflammation in eyes had a good GPRefer me to rheumatology. There the consultant diagnosed inflammatory arthritis and other auto immune conditions. He said the numerous ‘normal’ blood tests were common in inflammatory arthritis, they showed normal inflammatory markers when the disease is active. He took a medical family history, my gran had rheumatoid and he said I had the genetic base, all it needed was a virus to knock my immune system. I started treatment and got my life back. Within 4 weeks I could walk 3 miles, before I struggled to get out of bed,. Sorry for the long history - it may be irrelevant to you babachic but it may trigger a thought for you or someone else.

Omg, can’t believe I missed this! Identical! Thank you for this! And sorry you had the same, so sorry 😢

@Mossstitch i had covid in May 2021, i spoke to my GP about possible long covid but was totally dismissed

@lotsofdogshere @Phoenix76
thank you for sharing your experiences, that sounds really hard and scary! Glad you're both being supported and managing things much better

I will keep on at my doctor to see what can be done next

@Thelnebriati I don't think I have but will keep it in mind next time I speak to my doctor. i had no idea ulcers could have that kind of effect, glad you're feeling better

@MistySkiesAfterRain that's really helpful thank you. I would say i get adequate sleep but feel like recently i've had too much, my body just seems to be unable to function without extended periods of rest/sleep. I will have a look at the spoons approach too- never heard of that.

OP have you had your covid vaccine? I’ve been feeling very much the same and had full bloods done, everything normal apart from low folate. I’m in folic acid now but don’t feel much better. I was thinking back to when I started to feel like this and it seems to be around ages weeks after I had my second covid vaccine (Pfizer). I was chatting with my friend today and she says she has been feeling the same and had wondered if it was to do with her vaccine so when I said I was feeling the same she is even more sure it is connected.

This sounds exactly like long covid OP. I would ask for a referral to one of the dedicated hospital clinics. Were you fine before you had covid?

Well if the symptoms only started after covid I'd say its what they are calling long covid, if you had symptoms before then it's not. I got covid March 2020, the fatigue was like nothing I've ever felt, like wading through treacle. Usually very fit never even had flu despite working in NHS with close patient contact. Managed full time work for years on 4-6 hours sleep but after covid I could sleep 12 hours and still be shattered. Nausea for 4 months, upset stomach for months more, worst headaches I've ever experienced especially after exertion (as simple as doing a big shop or working for a few hours), breathlessness, sinus pain, various other inflammatory and allergic symptoms. Couldn't work for a year then graded back to part time. I'm semi retired so able to work bank hours when I like but even 18 months later I feel ill after 2 consecutive days working, usually in bed 12 hours and headache/nausea for 24 hours after. It has slowly got better and I'd say I'm back to 95% but you have my sympathy if you feel as bad as I did with a small child, I was at least able to stay in bed whenever I wanted and pace myself. I'm sorry I can't offer any solution, I've tried various natural remedies without much success just discovered that ibruprophen (anti-inflammatories) seem to help me more for the weird headaches, whereas in the past I would have used paracetamol for a headache so the symptoms are obviously caused by inflammation.

@MaryAndGerryLivingInDerry

OP have you had your covid vaccine? I’ve been feeling very much the same and had full bloods done, everything normal apart from low folate. I’m in folic acid now but don’t feel much better. I was thinking back to when I started to feel like this and it seems to be around ages weeks after I had my second covid vaccine (Pfizer). I was chatting with my friend today and she says she has been feeling the same and had wondered if it was to do with her vaccine so when I said I was feeling the same she is even more sure it is connected.

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)

Sorry but I wouldn't hold out much hope that the long covid clinics will cure anybody, I'm a therapist at a hospital that has one, it is mostly run by therapists and is about breathing exercises if breathlessness is a problem, or pacing strategies/energy conservation if fatigue is problematic. As with a lot of things, time is a great healer 💐

This us what has happened to my 14 yr old daughter. Covid Easter 2020 (no test avail so not 100% but pretty sure). She can sleep 12 hours wake for 2 & be exhausted again. 50% school timetable and still not managing. GP said; 'you can't prove it's long covid - you'll feel better in time'. Here iron was only 16 when last measured (I have a history of low iron and have infusions).