Think I’ve got chronic fatigue syndrome - any advice?

[Capricorn8990]

Hi all, bit of background.. I had my first baby in June 2022, she’s slept through the night since 9 weeks old (I count my lucky stars!). I lost over a litre of blood during childbirth and my placenta got stuck so had manual removal. My platelets were low so I was given a dye (can’t remember the name) to help them.

For as long as I can remember I have never slept well. I wake up unrefreshed feeling achy and hungover as if I’ve done a major work out whilst drinking heavily. I have a sore throat most days and generally feel under the weather and stiff. If I go for a walk the following day I am wiped out. I get muscle aches all through my body too and sometimes it hurts to move. My brain fog is awful. I find it hard to explain what I’m trying to say and I’m sluggish when responding to people and slow. I have terrible headaches which lead to migraines, dizzy spells that make me lose balance and nausea to the point where I’m sometimes physically sick at night. I also suffer from horrible night sweats. I am so tired throughout the day that I could fall asleep on the spot but with an 8 month old the show must go on.

I went to the doctors and they did lots of blood tests and it showed I had low vitamin D. I’ve been taking high strength tablets for 6 weeks but they haven’t helped at all.

I am a 29 year old woman who feels like I’ve been struck by a train everyday. It’s getting me down now. I’m slim (about 60kg) and 5ft 4.

Today I felt so awful that I cried. I’ve requested a GP appointment to discuss my concerns further but they’ve given me an appointment for 3 weeks time.

My MIL seems to think it’s just being a new mum and my hormones being everywhere but I don’t think it is. My hormones have levelled out and my periods are stable. I know being a mum is tough but this tiredness is something else.

Has anyone been diagnosed with chronic fatigue and how did they get their diagnosis?

When I speak to the doctor what do I say? Do I tell them that I think I may have chronic fatigue from doing my own research?

The test for ferritin might be listed as Iron stores.

This is the full blood count I had done. Is ferritin not included in this?

I have post viral fatigue at the moment. All blood tests and a chest x-ray were normal. Physically there's nothing wrong, but I'm exhausted and shaky all the time. I would persist in getting your bloods done, just to rule out anything else, and just wait for it to improve.

Sounds like it could be Long Covid/ME. Any heart palpitations? Kind of like you're going over a humpback bridge and feeling that weightless feeling?

Get the GP to rule out all purely physical causes first.

I had CFS, it was due to a complex mix of psychological factors that caused physical effects in my body. The NHS basically washed their hands of me, I don't know if things would be different now. I eventually fully recovered with very gradual controlled increases in activity plus expert psychotherapy, I had to go privately to access this.

@Mysmallgarden sorry that you’re experiencing fatigue! It’s horrible. I don’t feel like I have a quality of life at the moment as drastic as that sounds. I’ve suffered with OCD all my life and I’ve been able to control that but now seems like this is setting me back

@Mysterian yep I do get heart palpitations! Is that a CFS symptom?

@ManchesterGirl2 that is my plan but it just seems so hard to get the doctors to listen without them being dismissive or saying they don’t think it’s xyz without explanation.

sorry that you experienced no help from the NHS. I’m glad you have it under control now

@Capricorn8990 ferritin isn't included in the test you had

Yes. I've had Long Covid for over 2 years now, but nowadays the symptoms I get are 'textbook' ME/CFS. I've got good at working with them and avoiding things that set me back. I can only work 5 hours per day now and social life is much reduced.

NHS website:
"Common symptoms of ME/CFS include

feeling extremely tired all the time – you may find it very hard to do daily activities
still feeling tired after resting or sleeping
taking a long time to recover after physical activity
problems sleeping, such as waking up often during the night
problems with thinking, memory and concentration

Some people with ME/CFS may also have other symptoms, including:

muscle or joint pain
headaches
a sore throat
flu-like symptoms
feeling dizzy or sick
fast or irregular heartbeats (heart palpitations)"

Where’s the rest of your blood test results @Capricorn8990 ? Did they even do Iron Studies? That’s what it’s called in Australia where I am. It includes your ferritin which is your iron stores.

I’ve had CFS for nearly 23 years. It’s crap. There’s no treatment apart from making sure the rest of your health is normal.

Have you been checked for sleep apnoea? You don’t have to snore to have it and you don’t have to be overweight either. Has a partner ever commented that you pause breathing while asleep? It can cause a sore throat from the snoring, and can also cause headaches, mental fogginess and generally feeling like shit. You’d need a sleep study to diagnose it and usual treatment is CPAP. Your GP would the one to refer you for the sleep study.

Your GP sounds like you need a different one. Can you see one who is interested in getting you feeling better?

The usual treatment for low vit. D here is 1000-2000 IU of vit. D daily for 3-6 months and then recheck blood levels.

Other blood tests that might be useful and tend to be standard here for tiredness are ESR (erythrocyte sedimentation rate - a measure of infection), autoimmune tests like ANA and CRP, coeliac antibody screen, B12, folate, E/LFTs (liver function tests), fasting glucose, and thyroid tests including TSH, T3 and T4.

Congrats on your baby.

These could equally be caused by hyperparathyroidism or something else. They are lots of things that need to be ruled out before you start thinking it's chronic fatigue or long Covid (I have long Covid - confirmed by autonomic function tests - and it doesn't sound like that's what you have).

Hi Op! I was diagnosed with ME/CFS. I told
My GO that I thought I might have it. She agreed and referred me to a specialist unit. As part of that referral process, she had to run many blood tests to exclude other issues.

The advice I've had from the GP and the hospital is to pace myself. In other words, build in rest periods into your daily schedule and spread out particularly tiring activities across the week.

I'm starting a series of weekly seminars with the hospital in about a month so I will know more then.

I agree, your symptoms do sound line ME/CFS.

If that's the only blood results you've had then you haven't had anywhere near enough tests to be diagnosed with CFS/ME/Long Covid. Palpitations, exhaustion etc have many possible causes.

As others have said, CFS is a last resort diagnosis which you really don't want unless you've exhausted every other (treatable) avenue.

@Mysterian I really do feel for you! I hope with time your symptoms improve.

I have had a look at the ME/ CFS symptoms and I do experience a lot of them.

@BananaBender ill take photos and post the rest but I can’t see ferritin on any of them. So I’ll have to ask for that to be checked. I do snore occasionally but not every night and my partner has never commented about me holding my breath.

Thank you for the advice and insight into what can be offered. It’s hard to know what to ask for if you don’t have a clue what should be checked! Awhh thank you, I’m really enjoying motherhood.

@HundredMilesAnHour I had thyroid checked which came back normal as GP said it may have been an issue with my thyroid given my symptoms but that’s now ruled out.

@dizzydizzydizzy thank you for commenting. Can you remember what blood tests you had done to rule other stuff out? Also, referral wise how long did that take? I’m aware waiting lists are much longer now since covid. Good advice and something I’m already trying to do as I notice if I have a very busy weekend I’m wiped out by Monday! That’s great re the seminars. I hope they benefit you and you can learn how to manage through them.

@belimoo no I had other tests done, but I only posted that one as I thought ferritin may be on there but under another name. I’ll post the other tests I’ve had done with the results.

I have a telephone call with my regular GP on 9th March but that’s almost 3 weeks away. So I’ve been advised to call on Monday for an earlier appointment.

I can't remember what blood tests I had. The hospital told the GP which ones to do. All I know is there was a lot of them.

The waiting list was pretty short actually. A few weeks for an initial appointment. Then a few months wait for the seminars.

Test results

Test results

@dizzydizzydizzy thats good that you didn’t have to wait that long. Pleased for you about the speediness and how good your GP is but I’m sorry about your diagnosis. I hope I don’t have CFS/ ME but I’m fed up of feeling so rubbish and exhausted so I wanted to do my own research and go to the doctor with my views

That doesn't show your ferritin levels. It's usually stated quite obviously. Not sure if I've missed it but I can't see your B12 or folate either? Any of those can cause anaemia which could be an obvious cause of your symptoms.

I do have CFS but have found that fixing my low levels of vitamins and minerals has had a big positive impact. I also know that I have to rest regularly and incorporate that into my life. I wish I could do as much as others but I know I'll burn out if I try so I limit myself.

I hope you don't have CFS and you find something which is more easily fixable.

Just tell your GP that you think you may have it and say why you think that. My GP agreed with me straight away, although I had spoken to her many times in the previous few months about sore throats, dizziness, etc etc

Another one to add is allergies and intolerances. My irons been low but I was still tired. I found I’m allergic to milk and cutting it out has made a massive difference to my energy levels / aches pains. Turns out I’ve just been poisoning myself.

Celiac is easy for them to add to a blood test. Others are normally done privately as it’s hard to get them on the nhs

@Capricorn8990 That’s some great blood test results you’ve got, apart from vitamin D, but it’s easily supplemented and you should be able to get it back to normal relatively quickly. Definitely no iron or iron studies on there which is ridiculous when testing a woman who is complaining of tiredness and has recently given birth with significant blood loss. That and the more in depth thyroid tests would be helpful information to have. Was your vitamin D test done in October? It probably should be done again to check if the supplements have made an improvement. Follow up on a sleep study for sleep apnoea. If you can do an in hospital one where you stay overnight it will be more detailed and accurate than an at home one. Of course that will depend on whether you’re BFing baby or not, and able to be apart for one night. In Australia it would be from about 6pm to 7am.

Are iron infusions done in the UK or are they hard to access? Absolutely bloody brilliant if you have low iron. About an hour of your time and 1000mg of iron run through a drip straight into your blood. No tummy troubles unlike iron tablets, and the effects can be felt after about one to two weeks. Easiest way to correct low iron.

The criteria for iron infusion in the UK is ferritin below clinical range (which for some labs is as low as 11)!

11? Bloody hell that’s low. It’s 30 here.