Pain and just fed up of it all..

[Sara_A]

If it's not terrible fatigue it's now pain! I had a couple of ok days then a day in bed yesterday which was probably caused by the hot weather and doing some walking and the the rain so that little lot put me in bed for the day!

Today I have joint pain and stiffness where I just don't know what to do with myself, it hurts to sit, to stand, I'm just fed up I'm in too much pain and discomfort to get in the shower even with my seat or a bath. I dont want to sit and read again I want to do something useful like housework or something but I just cant and I've had to come upstairs and have a little meltdown and cry away from partner and kids! I feel so useless and I hate it I just want to get on and do things not just do nothing.

Its damp out again today so my joints and muscles are hurting and despite 30mgs zomorph this morning and at night I'm still in a lot of pain.

I just don't know what to do with myself as I'm uncomfortable and in pain but don't want to waste another day doing nothing but read laid in bed, what a waste of time.

Moan over, I have been out twice from shielding for a walk with the dog but scared myself after the 2nd time as felt rough so had a panic I'd caught something as I'd opened the gate but I'd used a piece of kitchen roll in my hand so that I didn't touch it with my hand.

[svfarmer]

Hi I’m so sorry your in so much pain at the moment- think maybe a call to your GP and ask if you can have something to ease the pain- it might mean a course of steroids - are you on any medication at all? The thing with lupus is you never know how your going to be from day to day - with me I had to give up my job and accept that I couldn’t do everything I wanted to do - I was used to running round like a headless chicken so I found it very hard to adjust with all the fatigue- but now I’ve learnt if I’m tired I have got to rest - it must be very difficult for you with children- thankfully I was diagnosed 4 years ago when my 3 sons had all grown and left home - sending big hugs 🤗

[Sara_A in reply to svfarmer]

Hi, yes I'm already on zomorph twice daily I usually take 30mgs in the morning and at night and I'm on 10mgs steroids daily and 20mgs methotrexate daily.

So yesterday I had to take an extra 5mgs morphine to top up cos of the pain. It took the edge off but everything away.

I sometimes have to increase my steroids to 20 or 30 when I'm worse but I hate doing that I hate being on them anyway, I've been on them over 10yrs and rheum said I'll probably never get off them, I'm usually on 5mgs maintenance but on 10mgs at the mo because I was struggling in the mornings and my partner was having to lift me out of bed as I couldn't move I was so stiff.

I'm just so fed up (I've had this for 20yrs ) but just now and again get fed up that I cant just get up and get on with things, today I feel a bit less pain but still have sore stiff joints. I hate the day to day not knowing how I'm going to be and if I'm going to be able to simply wash up or climb the stairs that day!

My kids are 4 and 7 yrs now so its been a very very tough last 4 yrs definitely but now they understand and are doing things more for themselves bless them, they are great x