What tests should be done before you accept a diagnosis of chronic fatigue or Fibro?

[4cats2kids]

I have had really bad fatigue on and off for several years. Have also had muscle aches and joint aches, pain in my lower back that feels like it in my spine. Stiffness that can be seen in the way I walk. I often get headaches that seem to run up my neck, behind the back of my head and behind my eyes. My eyes often hurt.

Have a several visits to several gps. Blood tests keep coming back as normal and they say no need to refer to anywhere else. One said possibly Fibro another chronic fatigue but neither would commit to a diagnosis. I wonder if they think it is all in my head as I’ve had mental heath issues in the past.

Would be grateful for any advice as this is ruining my life.

I have both fibro and and CFS my fatigue is never ‘off’ but is less severe on some days than others. The diagnosis was a process of elimination -i.e we can’t really find anything in blood tests. I spent several years being told all bloods are normal then a lovely young, newly qualified Dr joined the practice and actually listened to all my symptoms. She then booked me a double appointment with her to come back and do a pressure point test for fibro (not used much these days I believe) and said she was certain I had it as I reacted to so many pressure points, then referred me to the chronic fatigue team. This appointment was several months wait and was with a physiotherapist (which I’m still confused about) who spent an hour asking questions and declared he thought I was definitely also suffering from CFS. I’m not sure who referred me to rheumatology but, after more blood tests, they simply confirmed they were happy with the fibro/CFS diagnosis and that I had no rheumatoid arthritis. I do have osteoarthritis but that’s a different issue. The diagnosis doesn’t actually change anything tbh apart from knowing I have a legitimate reason to not be able to get off the sofa.

What I have discovered is that the ‘normal range’ of blood tests can actually be quite low and that some people don’t feel well until they are in the optimal range for many things -ferritin, B12, Vitamin D, TFT. Getting a Dr to offer any treatment when they consider your results as ‘normal’ is a different matter.
Would it be worth getting some high strength Iron, B12 & Vitamin D to see if there is any improvement? I’m sorry you are suffering, it’s awful to not have any answers. I spent years feelI got the Drs had me down as a hypochondriac -I think a lot of them in the practice still do tbh. I hope you get some answers soon

www.ncbi.nlm.nih.gov/pmc/articles/PMC5986027/

stichtingb12tekort.nl/english/misconceptions-about-a-b12-deficiency/

www.martynhooper.com/2018/02/10/chronic-fatigue-syndrome/

www.mumsnet.com/Talk/am_i_being_unreasonable/3902160-Chronic-Fatigue-Syndrome?msgid=96373977

www.mumsnet.com/Talk/general_health/3522328-ME-CFS-Fibro-spoony-thread?pg=2

I was diagnosed in 2012 after suffering for 7 years. Believed CFS/ME after a very minor bout of Glandular Fever. I had all the usual blood tests, many many times. Lots of ECGs to check for an abnormal heart rhythm, blood tests to check liver and kidney functioning. Tests for coeliac disease.
Mostly it was being bounced around between doctors, being given ridiculous advice (do yoga!) and falling out if the system again until I moved house and tried again at a new practice. Finally got referred to a specialist rheumatology clinic in Bath where I got one to one CBT and I was on Gabapentin to manage the pain for about 8 years overall before I gave up on it because the side
effects were too bad.

I'm sorry you're feeling so awful, it really is the most difficult thing to process when you keep getting knocked back. All I'd say is keep pushing. I was far too easily knocked back when I knew what I was feeling wasn't just normal for a "growing teenager"

So much of what Idoknowwhatyoumean says is my experience also. I eventually had a great doctor who did more bloods and listened as I had a bad flare up last year. He got me on proper painkillers and referred me to a rheumatologist to check nothing else was going on and also after ruling out arthritis, thyroid issues or anything else.
The rheumatologist did a pressure points test and confirmed fibro as the diagnosis. This was over 12 years after it was first diagnosed by a doctor who said 'I think it's fibro' and gave literally no information or support at all!
I think your doctor needs to check there isn't anything else here-and this can be done so do go back to them and ask.
Bloods can come back normal but can rule out other conditions.