Newly diagnosed with CFS

[ThatchersCold]

Hoping for some advice. I have suffered with extreme exhaustion for a couple of years, and I have really bad memory problems and brain fog. I can’t remember the last time I got through a day without sleeping. I also get ill a lot, starts with a sore throat and then I go down with flu type symptoms for a couple of weeks and literally can’t get out of bed.

I feel really down and a bit angry about the diagnosis. I want to get well and have my life back. Everything is a struggle (I’m a lone parent too which doesn’t help).

I realise it’s a bucket diagnosis and there’s no ‘cure’ as such, but I want to at least try to get better. Hoping that others who have made some headway with recovering from CFS can give me some advice.

Oh that is difficult.

It is possibly that they haven't tested absolutely everything it might be before diagnosing it though.

Can you get printouts of your bloods and post them here?

If they haven't done a full blood work up including a FULL thyroid panel, cortisol, vitamin B12, vitamin D, folate, ferritin, coeliac disease, lyme disease (note you can still be chronically ill from gluten without having positive antibodies and lyme often comes back as a false negative even if you have it) then they haven't ruled out everything. Just on the off chance you can find out the actual cause.

And have you had a sleep study to check whether you have sleep apnea?

I mean I'm no expert but if there's a chance you find it's something else and can feel at least somewhat better it's worth spamming you with all this!

Every year ME Research UK gets about 400 calls or e-mails from patients. A small number of these – not a flood, but a regular trickle – are from patients reporting that they have improved after being re-diagnosed with and treated for another condition. These conditions have included Addison’s disease, multiple sclerosis, sleep apnoea, primary mitochondrial disease, primary liver disease and paranoid schizophrenia – and in every case the caller has been content with the re-diagnosis and/or the new treatments it has brought.

These reports provide clear, formal evidence that almost half of patients referred from primary care with a diagnosis of ME/CFS actually have something else wrong with them – a fact that is not discovered until they are lucky enough to be seen at a specialist clinic. This seems like misdiagnosis on a grand scale.

See: www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/

Definitely get full printouts of everything you've been tested for to lead to your diagnosis and if they haven't tested even one thing, go back and ask for it to be done.

Also you can get private blood tests for a relatively affordable price.

Thanks for the replies. I did have the full bloods done and they came back as normal (I don’t have a printout but could probably get one).

Fairly sure I know the cause; it’s the stress of living the last 9 years of having a psychopath (my ex) threatening to kill me. I’ve got all the symptoms of PTSD but I’m not really strictly post trauma as it’s still ongoing.

Yeah you're legally entitled to them. I'd really recommend getting them and posting them here.

"Normal" is often NOT normal and almost always, not everything is checked.

And yeah, that can certainly be a huge factor in how you feel. Hopefully that's all over with now? Sounds awful. :(

Well kind of all over but he’s still out there and a threat to me and my kids, he’s not the type to forgive and forget.

Will ask for blood test results printout, thanks.

One thing I’ve noticed is that I do feel really bloated if I’ve had refined carbs or cider (I go from fairly flat stomach to looking about 6 months pregnant after a pint!).

Very good advice from @9amTrain.

I was diagnosed with CFS in 2010 by a consultant endocrinologist on the basis only that I had passed a glucose tolerance test and he could tell there was nothing hormonal wrong with me just by looking at me! Through a lot of research and persistence on my part, I now have a diagnosis of hypothyroidism and the combination of this being properly treated and my vitamin B12, vitamin D and ferritin deficiencies being corrected, I am now completely well.

Good luck!