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?

Absolutely mad. The cost of a private iron infusion is about £600 in the UK.

Coming to this thread a little late, OP. Firstly, please don't look to having CFS as a diagnosis if at all possible. It's the last ditch 'diagnosis' when the medical profession have no idea what's causing your symptoms. It's a very negative diagnosis to receive as it will prejudice doctors against you in other circumstances. I have heard some real horror stories. If you ever do think you really have CFS (like I do) then you are far better off not mentioning it. Sorry it is this way, CFS needs far more research done and real help given to people.

That said, my first thought is that you may have thyroid issues. Can you please clarify that TSH result you posted, it's very hard to see. Is it 0.03? Or 2.03? You need a full thyroid panel, which means TSH, FT4, FT3 and thyroid antibodies. You can get such a test from Medichecks, doing a simple finger prick blood test that you send off for analysis. That avoids the NHS labs not testing those things because you have 'normal' TSH.

You should also have an iron panel done (that will include ferritin, the stored form of iron). Also folate, B12 and you say you've had Vit D done already (not everyone responds to D supplementation via the oral route. You may need to use a spray such as Better You).

That's the bare minimum of tests. Any of these being sub optimal can mean you feel very tired.

Just reading through your symptoms there with the upper abdomen pains, nausea etc - what does all of that feel like? I get this with gallstones. I don't really get the screaming pain people talk about but painful niggles on the left and right side under ribs and really severe fatigue when I have a flare up. My gallstones were diagnosed shortly after having a baby.

I'm not saying it's exactly that but could be something similar - have they arranged an ultrasound for you?

Also if you want more information about chronic fatigue, you should look at the agreed diagnostic criteria:

me-pedia.org/wiki/Canadian_Consensus_Criteria

me-pedia.org/wiki/International_Consensus_Criteria

www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html

You could take a look around the Phoenix Rising forum for more information, it's a place for those with ME/CFS.

phoenixrising.me/

Holy shit. That’s just over $1000 AUD. It’s about $200 out of pocket after Medicare rebates, and sometimes people can get them for free through the public hospital system if they’re unwell enough but that would probably take months.

A completely agree with @CrunchyCarrot . Don't go in and say you have CFS. Lots of treatable or even curable conditions have a similar set of symptoms and you want to make sure doctors properly test for those. Including referrals to appropriate specialists.

@MeinKraft Good point about gallstones. Bloody bastard things they are.

@Capricorn8990 Where is the upper abdo pain? What does it feel like? Does it match up with your nausea?

I said that your symptoms might be parathyroidism, that's nothing to do with your thyroid.

Hi, I have ME and yes reading through your list of symptoms it does sound very similar to mine including being physically sick on a night, especially if I had done too much that day or the day before. It took 7 years before I finally received a ME diagnosis, I had alot of different tests then I was eventually referred to an ME clinic, have a look to see if there is one local to you and see if your GP will refer you.

If it is chronic fatigue you don't particularly feel much better. Mainly a diagnosis. I have it but no meds help. When it hits it hits so bad. Seriously feel like some days I've been hit by a truck and struggle with our 4. I did get back bloods saying low iron and vitamin d but even when they were raised back it didn't particularly help

I've never heard of ferritin before

You’ve obviously been lucky enough to have never had any issues with your iron or energy levels.

Why the passive aggression?

Sorry I’ve not replied to everyone yet, had a bad day yesterday.

I managed to get a doctors appointment today. My doctor is really good and she really listened to me. My iron levels were checked several times after having a baby and this included ferritin which came back normal as I had low platelets and they wanted to check for anaemia.

The only test I didn’t have done was for coeliac so I am having tests for that and they will re check my vitamin D levels too.

She is referring me for chronic fatigue syndrome as the checklist described me to a tee and all the tests I’ve had have come back within normal range.

I feel worse and worse everyday at the moment and it’s really making me depressed. Feel like I have 0 quality of life.

@HundredMilesAnHour im sorry I totally misread what you wrote

What was your B12 level? Number?

@TiaI 836.6

Do you know what your ferritin level is?

@belimoo I don’t have the print out for that as these were done in September time, but I checked with my doctor that they were done and she said they were as when I gave birth I was low so I was given medicine for it (can’t remember what) but I was sent home with a lot!

Ill ask for a print out of them when I get my blood tests done next Monday

I do think a recent ferritin result could be very interesting, especially if your iron has been low in the past. It's very difficult to get ferritin levels to a decent level using supplements.

I agree with @belimoo . You need current iron studies. September is a long time ago when you’re so fatigued and your iron might have gotten low. I’d be pushing for the GP to add iron studies to your current tests on Monday.

Fybromyalgia is a similar condition. Unrefreshed sleep is a huge problem, awaking stiff and in pain. The pain is in distinct areas, but can spread. The trigger points are here:
Front lower sides of your neck.
Upper chest.
Inner elbows.
Just above inner knees.
Back of your head.
Top of the shoulders.
Upper back (at shoulder blades)
Upper buttock.
Constant exhaustion is ever present, and overdoing things can cause a flair up. Your other symptoms are similar. All the tests your GP is doing are important, because diagnostic process is to rule out other conditions. A Rheumatologist can make a diagnosis. It is very difficult when you are told that all results are normal. Please do not think that it is 'all in your mind'. These conditions are very real and disabling. Not all medical practioners are up to speed. Hope you get the answers you need. In the meantime, have gentle exercise, rest as much as you can in your circumstances and eat well. Relaxation exercise and deep breathing techniques can be very helpful.

OP I felt like this after surgery and turned out to be shingles you can get it without a rash

Ask to see a rheumatologist. It sounds autoimmune and a good blood test to check that out is an ANA (antinuclear antibody) test. I have a feeling that a rheumatologist has to request it and that GPs can’t hence me suggesting that you get a referral, but check with your doctor as I may be wrong. I had (and still have) the same symptoms for many years and it ended up being lupus. I do get skin problems though which you don’t say you have so it may not be that. You may have Undifferentiated Connective Tissue Disease (which is mainly a fancy way of saying you have something like lupus or RA or sjogrens or similar but they haven’t got enough evidence to say which). If it’s any of those things there is treatment available so it’s worth the referral (and if you can afford to go private for the initial appointment it will save you a good 8-10 months on a waiting list - you can usually get seen privately within a week or two).

Thank you for the further replies and advice! I’m sorry I haven’t got back to everyone individually.

i had a baby group yesterday and I had to sit out whilst we had the dancing bit. Today I couldn’t get out of bed without dragging myself. The aches and pains I have today have hit me badly!

im taking it easy today and my mum is over to help with my little one who is full of a cold.

I’ll reply to messages when I can! X