Autoimmune fatigue

[Onesixone]

I'm really struggling with fatigue at the moment and wondered if anyone has any advice or tips. The rheumatologist thinks I have UCTD and one of my symptoms is fatigue. When I have a flare up, I push through work in the week (I only work part-time) but then spend the weekend and any days off completely floored- it feels like i'm literally unable to lift a finger or muster the energy to do anything, I just want to pass out and sleep! I try to pace myself where I can, but it's affecting family life and it's so frustrating not having the energy to do all the things I want to do!

Work on the pacing yourself, if you can afford it buy help with cleaning, ironing etc. It is frustrating but fighting it uses up energy. I am very glad that I developed autoimmune connective tissue later in life so haven’t the demands of family and employer. At least your consultant accepts fatigue as a symptom!

Sorry no tips but watching with interest. I have two autoimmune conditions (first diagnosed 30 years ago, second 5 years ago) and get terrible fatigue - often without even a major flare of either condition. It just appears out of the blue and can last for weeks.

Really struggling this week. Had to come home early from work today and last week had to take a day off. Usually like you I push on through and try to recover in my own time but this time I can’t even manage that.

I try to keep active - gentle walking etc. Not drinking alcohol. Lots of water, healthy food etc. Makes no difference and I find even gentle activity really takes it out of me - really only worth it for mental health benefit of being out.

I know that one day I’ll suddenly realise it has passed and then I’ll feel amazing for a few weeks. But I wish I knew how to make that happen and stop the fatigue happening again.

Hospital consultants acknowledge fatigue as a symptom. GP useless and told me that it’s because I am depressed. Which I am not (I just cried with frustration when I went to see them about it - but it’s the fatigue making me sad, not depression making me fatigued!).

Fatigue is such a tricky one. I always feel like I'm being a wimp because I'm just 'tired' and everyone else is but then I remember the times that I to sit down and rest halfway walking up a flight of stairs. In my case, a long term course of steroids helped massively but I don't know if that's a treatment for UCTD. Now, I'm generally okay although I do get very tired very easily.

I completely get what you mean @mynameiscalypso about feeling like a wimp. I feel like I must come across as so lazy, when I really want to be up and active but just physically can't! It's hard to explain to others. I've worked out I definitely need to avoid alcohol (I barely drink anyway) as that makes it worse. I'm going to discuss medication with my consultant soon so maybe that will help.

Ooh sorry to bump this but it’s not old enough to be a zombie thread yet… I googled ‘Mumsnet autoimmune tiredness’ as I think I just need solidarity and to hear that it IS actually a thing and not in my head.
OP I have UCTD too and don’t often hear of others with it. I was diagnosed in 2022 ish after suffering since 2017. I think I still haven’t really taken that in, and need to actually start looking after myself. I tend to always blame feeling ill/tired/pain etc on me just being whiney but actually I think it is all part of the disease. UCTD is a tricky one as it was presented to me as pre-lupus, not really bad enough to fall into any actual specific disease. So then I must just be weak for feeling this bad !!?