Miserable about a flare up

[KatyMac]

I've spent.most of this week in bed and a fair amount of last week too because of a flare up

I try to sit in this glorious sun but it's hard when basic hygiene and eating take more energy than I have

Feeling a bit sorry for my self

Didn’t want to read and run - what’s the flare up of OP?

As someone who suffered really badly with chronic fatigue several years ago you have my sympathy. Whilst your problem may be different to mine I do know what’s it like to be so exhausted that it’s virtually impossible to get out of bed and find the energy to have a shower or lift a hairdryer. The only advice I can give you with the benefit of hindsight is to listen to what your body is telling you, and don’t feel guilty. I know to my cost that you’ll do yourself no favours in the long run if you push yourself too hard, so give yourself a few more days of real rest and then if you feel up to it start to take baby steps and build up gradually.
I was lucky enough to be referred to an NHS Chronic Fatigue Centre and although I wasn’t very appreciative at the time the advice I received there was really helpful and has stood me in good stead. I now consider myself free of the condition but on the odd day when exhaustion does begin to creep in I’ve learned to slow down rather than try and power through as I would have done in the past.
Hope you feel better soon.

Try and work out what your brain is trying to protect you from. We think flair ups are random but they’re not

TBH @millymae I'm never quite sure, I have a few CFS/ME or Fibro are probably a good call

Don't think it's the IBS, no extra symptoms for that

Could be my thyroid as my meds aren't balanced yet or menopause having a blip

Or maybe i caught a minor bug and I've gone post viral without even noticing symptoms of the bug

Oh I've done the cbt about 6 times I reckon but a flare up always comes unexpectedly - I'm pretty good with balancing my spoons but they still sneakbup on me

No idea @Happyinarcon

But it's a bad one

I’m so sorry you’re having such a long flare up, it’s absolutely awful to be in that position. I’ve got a similar chronic condition too & know that I’m on my way to a flare - it’s been a
while since I’ve had one & it’s inevitable one will hit me soon.
Working out why we get them is another thing entirely, everyday life is so complex & there are so many things that can trigger our bodies into a hugely negative reaction.
I hope you are able to get some relief from your symptoms soon.

Sometimes it's obvious what caused it - sometimes I know it's going to happen so plan for it

But when it comes out the blue - it's so annoying

I have things to do!🙄

I’m in the third week of a really bad Rheumatoid Arthritis flare. Have hardly been able to walk at times and just using my laptop for work has been difficult.

I’m overdue my infusion, which should have been three months ago, but I had extensive emergency surgery at the end of last year so couldn’t have it. Fortunately I get it this week, so once it kicks in, I should start to feel better.

This weekend it’s decided to go to my jaw and neck too, so eating and turning my head is interesting. I’ve lived on a cocktail of codeine and Tramadol for 3 weeks. This flare has been the worst in 7 years.

@HelpMeGetThrough that sounds awful especially the delay after surgery - My brother has RA its horrid

My only problem with eating is that easy to prep/eat food is normally not the best nutritionally or safe for allergies/intolerance

My hands have been bad and my joints but it's the exhaustion/struggle to breathe that has been the worst

So sorry to hear this @HelpMeGetThrough - that sounds absolutely miserable and you need that infusion asap. It’s so debilitating, painful and exhausting when you have a flare like that, especially after 7 years - hope you feel better soon.

Thanks to you both. Hopefully the infusion this week will get me back on track again. At least the warmer weather looks to be on the way too.

You poor thing, three weeks is far too long to suffer an RA flare! If you are normally stable, it’s probably the combination of your infusion being delayed and also the effects of the op setting off your joints. Do you have a Rheumatology helpline you can call? Depending on how it works in your area, you may be able to get a steroid injection to help settle your joints via your GP if this happens again. If you flare a lot your treatment may need looking at.

How are you doing @HelpMeGetThrough ?

Has the infusion materialised?

I'm still feeling pretty shit

Still struggling to stay awake/alert for.more than a couple of hours before a rest/sleep

I have a couple of autoimmune diseases (they’re the shittest collectible in the world but there you go ) and it’s the most recently diagnosed that makes it obvious that I really struggle with extremes of temperature and seasonal changes. I wonder if that’s something that might be a trigger for you?

And the hour going back maybe?

I just feel so tired and down

Fibromyalgia has over 200 symtoms.... including IBS/ diverticulitis.

Neurological symtoms .
Pain Symtoms.
Perception symtoms.
As well as general symtoms.
I run a world wide Fibromyalgia group.
At least now it's been diagnosed as an Autoimmune disease.. a good few years back it wasn't. I have it most days.. but flare up pretty bad.
Along side osteoarthritis and my other severely disabled conditions.
It's never ending.
My daughter is in a wheelchair now with all her autoimmune diseases.. as well as EDS and PoTs .

( I'm on morphine patches).

@KatyMac do you take high strength vitamin D? If not, consider it or ask your dr to check your levels. If they’re low they can prescribe a regime to boost your levels.

I do I alternate between 6000 & 9000 each day & I take high dose b12 too ( plus K, methyl folate, ubiquinol, potassium zinc magnesium and iron....just in case)

Yeah, no one every has one auto immune!