Living with extreme fatigue for 18 months, no answers

[Wobblyheart]

I am just feeling so hopeless today.

I've had so many checks and scans (but of course it's impossible to scan the full body). A year ago GP and a number of other health professionals were putting my fatigue down to anxiety and being a new mum. Now I have new symptoms and awaiting ab investigation in 2 weeks time.

I am hopeless and scared. I haven't been able to find people who can relate to the level and extent of the fatigue I have been feeling so I know it's not normal. It's not anything easy to spot like thyroid, hormonal, diabetes celiac, vitamin deficiencies etc. Ive even been tested for autoimmune, MND and MS. All negative.

All I keep thinking now, with all of this and bre symptoms.. I guess it's cancer? I have also been having night sweats in the last year.

I have anxiety but I am struggling to see logically what else could it be.

Do you have other symptoms?

I would suggest if it was cancer and they've done blood tests, it would have shown up.

It may be chronic fatigue syndrome aka ME. This is only diagnosis by elimination. There's no test for it.

Some gastro symptoms that came to light and which I never had before a couple months back.

These make me think cancer as I don't think I quite fit the CFS

@Wobblyheart have you tried any anti depressants? I had an awful year last year. My lg was born in Jan and I was so tired even after having a good nights sleep. I was dizzy and forgetful. I had pins and needles amongst other things. I had every test going. Three drs told me to try sertraline and I finally gave in and within a few weeks, all my symptoms had gone! X

@Wobblyheart forgot to say, I also had a lot of issues like ibs type symptoms x

It sounds like CFS to me. What makes you feel that out isn't CFS?

Could you have had Covid? The extreme fatigue, normal bloods, being diagnosed with anxiety, sweats and gastro issues are all very common with long COVID.

Any other symptoms? Other common LC symptoms include brain fog/memory problems, heart palpitations and feeling fluey after exertion (PEM). There are lots of others too but those are the most common. Any other niggly issues you have?

Thank you for your message, I am on sertraline, I'd didn't make any difference to my fatigue :(

Just to clarify although I'm sure you're aware, long covid can trigger CFS in many people, but there can be other cardio, neuro or gastro issues too.
Good luck, rest as much as you possible can (easier said than done) and I hope you get some energy back soon.

Btw, lots of us do understand the extreme fatigue you describe. It's horrendous and ruins your life but no one around you really understands. I used to describe it as feeling very anaemic and weak, not having eaten in a week and then run a marathon. Even then, I don't think it fully described how I felt.

Oh I had a few last year and still some now (like, pardon me urinary urgency but this is due to prolapse and complicated pregnancy/birth).

As to others - heart racing, breathlessness, immideate muscle fatigue on minimal exertion...

With the PEM I am not entirely sure whether I have experience it. There were a couple of occasions in life when I definitely had something similar, like I couldn't get to work as I felt like a ten tonn truck hit me after an intensive work out. But there were only two or three of these instances in my whole life, there it was so obvious. At the moment it's more no matter what I do and how much I rest I don't see a change in thr level of the fatigue. Although I haven't had more than 0,5-1 days rest in the last year.

Oh yes and the brain fog. I became very disorganised

Yes I think I am really struggling with this aspect. My gp, my partner ... everyone thinks I am fine as I just carry on as I used to (or mostly), but what choice do you have with a 19mo?

I did have covid but I think symptoms started a couple of months before then. But it'd difficulty to unpick what was causing which as it was towards the end of my pregnancy