When you have a flare up what are the two things that bother you most usually?

[trueman]

Just interested to know which two things bother you most when you have a flare up? And how long your flare ups usually last?

Thank you

[Bronagh2015]

The soul destroying fatigue and awful facial, neck and chest rashes. My flares can last from 3 weeks to 6 months.

[trueman in reply to Bronagh2015]

Thank you Bronagh. 6 months! And here I'm moaning about 4 weeks.. The fatigue is strange. You think you might have energy then whack! It knocks you out for another day or two.. That's me anyway. Thank you for responding. I'm interested to know what each person feels is more prominent during flares.

[Dragonfly4]

Fatigue, fatigue and fatigue.

Sometimes intolerable pain... Tramadol helped, steroid injections help.

It can last a day, to weeks, to months.

What bothers me the most. The lack of understanding of those who think you look 'fine' and have no idea of the everyday struggles.

The unpredictability of the disease. One minute you're OK, then something goes out, you feel ill, you are sitting having a chat on the phone, go to stand up and something's not working, you realise your jaw hurts from smiling, your hand won't move because it's stuck in the shape of the phone and your hip gives out so you hobble along. Infuriating.

Payback. Having a good day, doing your stuff and thinking woooohoooo, this is a good day... To waken the next day feeling as though your knocking on deaths door.

Absolutely, totally and utterly frustrating and infuriating.

Wanting to do, wanting to live... Having to take time out to rest just to get through to the next day.

[trueman in reply to Dragonfly4]

What a great post Dragonfly! This part I especially can relate to..

"The unpredictability of the disease. One minute you're OK, then something goes out, you feel ill, you are sitting having a chat on the phone, go to stand up and something's not working, you realise your jaw hurts from smiling, your hand won't move because it's stuck in the shape of the phone and your hip gives out so you hobble along. Infuriating.

Payback. Having a good day, doing your stuff and thinking woooohoooo, this is a good day... To waken the next day feeling as though your knocking on deaths door."

This is exactly how it works for me. And just why, I am sure, most look at you and think 'you look fine'. Especially if one day you seem ok but the next you are suffering - and nobody quite 'gets it'.

Thank you.

[sophiecr in reply to Dragonfly4]

Well done! You said it all for a lot of us.

[loopy-lou in reply to Dragonfly4]

Hi Dragonfly4, Your words are so accurate and so well written. I can totally relate to everything you have said. This is how it is.....I like your wanting to live....I am forever saying I don't want to say no but I will have to see how I am tomorrow. Great post!

[misty14]

Hi Trueman

Interesting question to ask. My three worse things are, pain fatigue and feeling ill!

Hope you feel better soon.X

[Hidden]

Pain, relentless pain mostly in the same places but I get it in different places too, then I seize up every time I sit down....and chronic fatigue, 18 months down the line. Wondering if I am in a permanent flare! Seriously tho, thinking about going back on steroids (really don't want to) as my body seems to have stopped working properly again. Do have the occasional day that I feel good but it never lasts more than half a day. It seems is am in the same place as everyone else - gentle hugs to you guys x

[trueman in reply to Hidden]

Thank you Ladybird. Ive never been on steroids. Im due to get a steroidal inhaler today and hoping that makes a difference with this wheezing. Have a steroidal nasal spray. Do the steroid tablets make a huge difference for you?

[chrisj]

My energy levels can be good and then out of the blue I'm tired out, it last a few days. I have mild SLE and other things

Its the burn ups, clamminess and fatigue that get me down, makes me feel quite poorly and all I can do is rest till it passes. Its about pacing myself

[Eileen73]

Hi, I'm new to lupus. Just curious does anyone have achiness in their feet and keeps them up at night? This is awful! It feels like it is traveling up my legs. Aside from the fatigue and rash. It hurts so bad to walk.

[Hidden in reply to Eileen73]

I get it sometimes. It sometimes wakes me up and I can find it hard to make my feet comfy on the mattress.

[clarelsmith]

Normally when I have not paced well , am still learning.

And stress but not intention work and home life.

Pacing is most factor

C x