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Original poster

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

106 replies

Capricorn8990 · 17/02/2023 15:36

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?

OP posts:
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WarriorN · 22/02/2023 18:52

I agree I wouldn't go down the cfs route till everything has been ruled out.

I think your folate could be higher; it's at the lower end and worth getting nearer the upper end. Lots of leafy dark green veg / salad daily. You could take a basic vitamin b complex eg berrocca.

Some people need folate rather than folic acid though so the sort in something like this will help www.togetherhealth.co.uk/products/b-vitamin-complex.

Tsh was a tad higher though could be post partum and not hugely out of wack - and potentially could be affected if your ferritin is really low.

What time of day was your blood test done and had you been taking anything like a b complex with biotin in it?

Make sure you're eating dairy food and milk for iodine too to support thyroid. A basic rda a-z multi vit (can take a b complex on top as those are water soluble vitamins.) but don't take high doses of iodine.

Have periods returned?

WarriorN · 22/02/2023 18:55

Re the tsh - note the note beneath it. I believe it links to a web page about planning a pregnancy with a tsh of that level. If you were it might indicate the need for thyroxine.

If you had your blood test around 9am that tsh is something to keep an eye on. If it was taken in the afternoon I'd consider asking for a recheck and make sure it's in the morning. Do not take any vitamin with biotin in it (a b vitamin) for a few days/ week before as it can affect the thyroid test.

Original poster
Capricorn8990 · 27/02/2023 22:36

I had blood tests done today for coeliac and I did a urine test. Whilst in the toilet I saw a sign about the menopause.. it said about feeling tired and achy. Does the menopause cause this? I understand that CFS is a last resort diagnosis.. if you can even call it a diagnosis but of course if it is something else I want to know. However my tests are normal, even when checking the numbers. I didn’t ask for ferritin again because I completely forgot (my brain has been elsewhere). However, I have seen online tests that you can pay for which are more in depth..

OP posts:
WarriorN · 28/02/2023 05:44

Yes I think with hindsight that's one of the reasons I seemed to fall into a cfs like state after my first. Very menopausal after my second at 41. Aches and pains were the first things to lift on patches.

WarriorN · 28/02/2023 05:58

You have night sweats - do you also feel very hot?

Have they checked you for diabetes?

WarriorN · 28/02/2023 06:02

Vit d could still be too low

Relaxingtime · 28/02/2023 06:32

Do not be out off by a receptionist
You have a right to be assessed and concerned by how you feel.
Use that to persevere when you ask for a gp appointment, not a telephone consultation
I would go in describing what you said on here to the gp.
Feeling wiped up and then feeling tired is different.
You know in yourself you do not feel right.
Good luck with some outcome to improve yourself.

Elleviss · 28/02/2023 08:12

Could it be Candida overgrowth? You list many symptoms. Not sure if they would check that on blood tests. Dietary changes would be required if it's Candida.

WarriorN · 28/02/2023 08:57

Other condition to rule out is parathyroid issues - I know low vit d is associated with one of them.

WarriorN · 28/02/2023 09:00

parathyroidpeeps.com/symptoms-of-this-disease/

CrunchyCarrot · 28/02/2023 19:27

It's often after birth or during menopause that hypothyroidism begins. Just a headsup on that front.

SuffolkUnicorn · 28/02/2023 20:04

I’m exhausted myself have you had your thyroid checked? I only had a problem with mine after my son was born bearing in mind this was 7 years ago I’m still exhausted I have days where I cannot open my eyes and my muscles feel like they are falling to the floor I went to the doctor last week she said I’m very low on iron I’ve been taking them for months but I’m still exhausted please see if you can get a dr sooner

SuffolkUnicorn · 28/02/2023 20:08

Relaxingtime · 28/02/2023 06:32

Do not be out off by a receptionist
You have a right to be assessed and concerned by how you feel.
Use that to persevere when you ask for a gp appointment, not a telephone consultation
I would go in describing what you said on here to the gp.
Feeling wiped up and then feeling tired is different.
You know in yourself you do not feel right.
Good luck with some outcome to improve yourself.

This I agree

when people say oh I’m so tired this isn’t what we are experiencing this is chronic fatigue and I’m tripping up sometimes when I go out . I was literally about to post about this I may still make a one

mummylondon16 · 28/02/2023 20:13

Test privately. I had hashimotos for 15 years after pregnancy and gp just said I was “ fine”
one of the most common symptoms of under active thyroid is fatigue. Sadly the nhs ranges are so wide they might say you are “ normal” or “ within range” when you are far from it. I test myself twice a year with thriva. I test thyroid, folate, b12, inflammation, Vit D, and a few other things. It’s well worth it as I know what to supplement and it shows your tests over time on a graph ( you can even manually input tests results you had at GP so you can see your overall patterns).
also ask GP for print out of all tests never accept verbal feedback

SuffolkUnicorn · 28/02/2023 20:16

mummylondon16 · 28/02/2023 20:13

Test privately. I had hashimotos for 15 years after pregnancy and gp just said I was “ fine”
one of the most common symptoms of under active thyroid is fatigue. Sadly the nhs ranges are so wide they might say you are “ normal” or “ within range” when you are far from it. I test myself twice a year with thriva. I test thyroid, folate, b12, inflammation, Vit D, and a few other things. It’s well worth it as I know what to supplement and it shows your tests over time on a graph ( you can even manually input tests results you had at GP so you can see your overall patterns).
also ask GP for print out of all tests never accept verbal feedback

thanks pp I’m going to do this and OP I think you should too

I agree they either say fine or borderline to me never have a printout

worldwidetravel2017 · 17/07/2023 14:19

How are you all ?

I just got a chronic fatigue syndrome diagnosis from a consultant rheumatologist... today
Hence found this thread

InMySpareTime · 17/07/2023 14:34

Welcome @worldwidetravel2017 I'm still hanging in there, currently applying for PIP not for the money but for access to close parking etc.
I went away in the spring and overdid it massively, and haven't yet got back to baseline. Hoping a nice quiet summer will help me slowly recover.
The hardest thing is PEM, it's so easy to do too much without realising then crash hard a day or two later.
I would like a personal battery display for my energy levels to alert me when I need to stop and recharge. Not gonna happen but it would really helpSmile

worldwidetravel2017 · 17/07/2023 14:38

I applied for pip but they havent decided yet .
I cant work as much as i used to etc

Silvermeadow · 19/07/2023 15:27

Hi, I've just had my diagnosis today alongside biological depression. It does take a long time, I had loads of blood tests, at first it came back I was anaemic etc. Had to keep making appointments and going back. I think the only thing that made them take notice was that I almost had a break down in front of the receptionist and told her that if nothing changes I'm going to walk off and kill myself soon because life is becoming unbearable. You need to let them see you at your worse which is really hard because when you have a flare up the last thing you want to do is phone the gp. What you describe sounds exactly like CFS.

worldwidetravel2017 · 19/07/2023 15:37

Got my diagnosis this week

worldwidetravel2017 · 19/07/2023 15:38

Silvermeadow · 19/07/2023 15:27

Hi, I've just had my diagnosis today alongside biological depression. It does take a long time, I had loads of blood tests, at first it came back I was anaemic etc. Had to keep making appointments and going back. I think the only thing that made them take notice was that I almost had a break down in front of the receptionist and told her that if nothing changes I'm going to walk off and kill myself soon because life is becoming unbearable. You need to let them see you at your worse which is really hard because when you have a flare up the last thing you want to do is phone the gp. What you describe sounds exactly like CFS.

Wanna share the woes ? feel free to pm if so

Original poster
Capricorn8990 · 29/07/2023 21:57

Updating: have an appointment with the ME/ CFS services on 17/08. Still no real improvement.

Sorry to those who have had their diagnosis and are struggling 😔

OP posts:
worldwidetravel2017 · 29/07/2023 22:26

Re vit D levels - having actimel helped me re vit D

ComeTheFckOnBridget · 29/07/2023 22:28

Anecdotally, I'm hearing good things about vagal nerve stimulation

Pleasemrstweedie · 30/07/2023 13:33

Just be aware OP that a CFS clinic is not likely to look beyond CFS in looking for a diagnosis, so I would expect to you to get a diagnosis. Whether that diagnosis will be correct and whether any effort will be made to improve your situation, is another matter entirely.

I speak as someone who was diagnosed with CFS more than once, but always in error. The rationale seemed to be that it was the easy option, compared to fixing the issues I actually had.

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