Seeking an Actual Diagnosis

[LCMILLER]

Hi there. For nearly a month I've been experiencing extreme tiredness. I've experienced bouts of this before (history of a brain haemorrhage and I have endometriosis) but this is much different.

I can only stay awake for up 3 hours at a time and sleep well during the evening (9pm till 12pmish is my normal).

I have recently had some medication increased (pregabalin) and my Dr thinks it's that even though my symptoms started before the increase.

Those of you with ME am I wrong to push for more investigating? How did you get your initial diagnosis?

Is there anything I can do to ease the tiredness?

[ChocolateBrownie]

Hi LCMILLER

I’m sorry you’re having a hard time.

ME/CFS is a diagnosis by exclusion so there’s a whole heap of blood tests required to rule out lots of other health problems before you get to ME/CFS. It can take several months to diagnose.

With Endo, hopefully you’ve had all of your vitamin and iron tests to ensure there’s no deficiencies.

Also have you had COVID? This could be some post viral fatigue? Lots of it about this year!

Fatigue is not the only symptom of ME/CFS, but can be difficult to sort out those symptoms when you have other health problems in the mix.

The main “treatment” for fatigue is pacing. There’s lots of information on the web about that. Try not to overdo anything, even if you have a good day, don’t rush around and try to catch up.

I hope you get to the bottom of things.

Best wishes

CB

[ALKT]

a brain haemorrhage or stroke can often leave people with serious fatigue . if you have post exertional malaise as well as fatigue then it is likely m e . please google the symptom list for m e then you may have a better idea for discussion with your g p sincerely hope it is not m e because their are no treatments or cure .

[strongmouse]

Dr Charles Shepherd of the ME Association has written about the importent tests which need to be done to exclude other diseaese before diagnosing ME. If you think there are tests still to be done then stand your ground.

The ME Association has some great information and a helpline. Don't be fobbed of by your GP. Usually there knowledge of ME and overlapping conditions isn't great. Stay as informed as you can. All the best.

[_Sarah_J]

My experience has been that since doctors don’t know much about it, so they don’t like to diagnose it. I have sleep apnea, and was finally diagnosed by a new sleep dr who had me fill out a questionnaire: the same symptom checklist you see everywhere online. In the previous 6 years of me seeking help not one other pcp or sleep dr or neurologist did that one simple thing. Good luck.