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?

Can you push for your VitD to be checked again? I had really low Vit D and had the tiredness, anaemia, brain fog, aches etc. The tablets didn’t do much but then they gave me an injection of VitD. And another after 6 months. New woman.

@PlantyPotts I am going to ask. My doctor said that there was no need to do further blood tests to check my vitamin D because the tablets usually work. I’ll ask when I do get to speak to my doctor! Glad you’ve got yours sorted now!

It's a diagnosis of exclusion which means they rule out all other possibilities first. I'd say you still need your bloods investigating more before you seek a decision on CFS.

Its tough though op, so do keep pushing your gp for investigations.

I felt like this when I had low vitamin D. How low was yours when they tested and what strength of vit D were you prescribed?

No advice on the CFS, but hopefully others will be able to advise x

@ComeTheFckOnBridget I thought it was a process of elimination of other things. I just hate calling the doctors. I have been made to feel by some of the receptionists that I’m bothering them when I’m explaining what’s wrong (as they always ask to determine if a telephone call or F2F is needed.) I also feel like I’m bothering the GP at times because some just don’t seem interested in getting to the cause. My endometriosis diagnosis took 10 years and it was awful. I just hope this isn’t going to be the same scenario.

I get that they are sooo busy but I’d like to function normally and live a normal life.

Thank you for your reply

@SundayNightDrama it was 31 ml, but it should be 60 and above. I think it was something like 50,000 IU and I took one tablet a week for 6 weeks.

Thank you so much x

@Capricorn8990 I know, it's really hard engaging with doctors especially since the pandemic. The number of hoops you have to jump through - and every referral seems to take about 6 months.

It is time consuming but keep ploughing on - the sooner you start the sooner you get answers.

Make sure they really investigate your vit d, iron, b12, thyroid etc. There are lots of treatable things it could be before you get to CFS.

@ComeTheFckOnBridget often feels that way doesn’t it. I definitely will because I want to be the best mum I can do my little girl and have the energy to keep up with her!

They did a full blood count and checked my iron, b12 and thyroid which were all normal as they did think I could have an issue with my thyroid. The only issue was with the vitamin D but I’ll ask them if they could redo all of the bloods again! Thank you x

Don't be fobbed off, I hope for your sake it's not CFS but you'll need to keep going back for investigations for them to reach the point where they consider it. Also see if they've checked your inflammatory markers and infection indicators.

Worth getting copies of your blood test results, if youee within normal ranges but very low within them then push for treatment anyway.

Have you had covid? Worth asking about long covid possibility.

I was going to ask the same thing about long covid. Check out www.nhs.uk/conditions/coronavirus-covid-19/long-term-effects-of-coronavirus-long-covid/

Do you know what your ferritin levels are? They GP will tell you they're normal if they're around 12 or over but I have symptoms if below 30 and they should ideally be over 50 or more.

I think the key is that there is something going on. Whether it is CFS or something else you need your doctors to work with you to establish. And don't accept a CFS diagnosis to readily. There are lots of very treatable conditions that can cause debilitating fatigue.

I spent 5 years going to doctors saying something wasn't right and feeling dismissed before an optician spotted I had signs of myasthenia gravis, I am now on medication and doing much better.

potential causes for your could be - thyroid (GP tests aren't always accurate) , coeliac (don't cut out wheat before testing though) or any number of other conditions. It's worth really looking and the pattern and detail of your symptoms.

I think the key is that there is something going on. Whether it is CFS or something else you need your doctors to work with you to establish. And don't accept a CFS diagnosis to readily. There are lots of very treatable conditions that can cause debilitating fatigue.

I spent 5 years going to doctors saying something wasn't right and feeling dismissed before an optician spotted I had signs of myasthenia gravis, I am now on medication and doing much better.

potential causes for your could be - thyroid (GP tests aren't always accurate) , coeliac (don't cut out wheat before testing though) or any number of other conditions. It's worth really looking and the pattern and detail of your symptoms.

Same here. I have debilitating fatigue if my ferritin is below 45! So worth checking.

What is your B12 result. In the U.K. the acceptable range is pretty low compared to other countries so you can have low b12, be very poorly and still be classed as totally fine by your Gp

Do you know the optimum range?

I echo the two posters re ferritin. I felt EXACTLY the same as you OP after my daughter was born. I was told "that's what having a child is like, you'll be tired." My ferritin was "normal" at 16 but I didn't feel right until I got it back up over 50. I took iron tablets and then liquid (the tablets are hard to digest) and my GP didn't seem at all interested in it, and I had to ask specifically to even have my ferritin tested in the first place (it's not included in a "full blood count"), but it worked.

Best not to pursue the CFS route unless or until you have to.

I was diagnosed with CFS twice, once by a consultant and once by a GP who was desperate to put me on antidepressants.

Actual diagnosis was secondary hypothyroidism, low B12 and folate, vitamin D and ferritin deficiencies. Properly treated, I'm fine now.

NB after your loading dose of vitamin D, you will need to take a maintenance dose if, say, 2,000iu a day, preferably softgels rather than tablets.

They did a full blood count and checked my iron, b12 and thyroid which were all normal as they did think I could have an issue with my thyroid

Get a print out of your blood test results. The U.K. ‘normal’ range for B12, and even ferritin, is quite low and you can still be symptomatic at the lower end of ‘normal’. Ferritin for our lab has a normal range of 22-300. Ferritin under 70/80 isn’t enough to support healthy hair growth so you may not feel well with levels towards the low end.
B12 has a normal range of 150-1,000 -ish. Other countries start a lot higher, in Germany they sell it over the counter to self inject because they realise how much lower levels affect people.

I had all your symptoms (pre DC) when I was suffering from hypothyroidism. I never understand lab results for TFT but I know there are many symptomatic people who’s bloods don’t put them in the range for treatment due to how the reference ranges were decided. If you get a print out of your blood test results and post it on a new thread in general health, asking for blood test results help, there are lots of really knowledgeable people who could give you pointers.

I have CFS, but it took the best part of a year to rule out absolutely everything else before I ended up with that diagnosis.
I hope for your sake that it's something else that is treatable, as CFS is a dead end treatment-wise, they just leave you to it and hope you somehow just magically get better.

I was going to say this. Low ferritin can make you feel as bad as anaemia. It needs to be over 50 in women (told this by two GPs and an endo!). Push to get that tested.

Also what was your thyroid result? Did they just test TSH? That can't pick up all thyroid problems. You need TSH, FT4, FT3 and thyroid antibodies tested ideally.

I'd check ferritin first and go from there. Given the blood loss you mention, low ferritin is a high likelihood.

Yes to checking ferritin.

Mine was 16 because of heavy peri meno periods and I was falling sideways as I walked along the corridor at work, as if i was about to faint. I was struggling to walk to the top of a hill with the dogs as I was out of energy.

I take ferrous sulphate and have had no issues at all, though as above there are alternatives if you need them.

Good luck OP.

Thank you for everyone’s replies.

I did get copies of my results but would ferritin say ferritin on the results list or would it be listed as something else?

I will ask about long Covid as I had in in august 2021 and then again in January of this year, but I didn’t feel ill like I do now after having covid the first time in august