LUPUS UK
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I’ve over done it! 😣

I’ve over done it at work. I got home today and felt the pain and tiredness all over me.

I fell asleep for an hour and a half and I’ve woken up more tired and in so much pain.

I’ve just said to my child, that I don’t know what to do about dinner cause mummy feels to unwell to cook 🙁 (dinner actually feels like a mountain I can’t climb)

My right arm I’ve been suffering with all week, pain and a heavy feeling. It starts in my lower shoulder blade and going down to my little fingers. It’s so heavy and I feel like I’m struggling to use it.

I’m filled with dread cause I’ve got to be up at 6am tomorrow and at work for 7. I can’t do it!!

I’m not sleeping well, the pain at night is awful.

So sorry for the rant guys and ladies, it’s just one of those days. I think I’m crossed with myself for over doing it as well xx

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Hi Lisa

I do sympathise. If it were just us, we'd crawl into bed until we had a little bit of energy. No one will suffer if you just have beans on toast, cheese on toast, scrambled eggs or an omelette tonight. Do you have a mum or mum-in-law who can do a big cook and fill your freezer with stews, bolognese, etc? This is what I do. Then, when I'm ill, my husband can just pull something out of the freezer. I also keep stocked up with frozen veg, jacket potatoes, frozen chips, etc. I always make sure I have eggs in too.

Where are you up to with diagnosis and treatment?

Heather xxx

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Hi Heather,

How are you?

I cooked frozen pizza in the end, it went down a treat.

As for diagnosis they’ve delayed my appointment, they said it’s due to unforeseen circumstances (? I’ve never had that in a letter from the hospital before) so now I have to wait until 16th May 😕

Treatment wise my GP has prescribed Amytriptaline and I’ve been taking that for the last few nights xxx

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Well, I'm glad you've eaten, but 16th May sounds like a long way off. Keep going to your GP,if you are struggling. I had a steroid injection 10 days ago. I feel much better. I still have joint pain, but I also have energy again..

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I’ve seen a lot of people on here say about steroid injections, is that what they do (give you more energy?)

I’m glad you’ve got a bit more energy. Have you used this extra energy to do anything nice or go anywhere nice and treat yourself 😊 xx

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The pain has diminished. I think the steroid reduces the inflammation throughout your body. i'm just rejoicing at spending a full day awake. I did some cutting back in the garden for a couple of hours on Thursday and it didn't knock me out for the next two days. I'm just gently enjoying my life.

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It’s lovely when you get a day or two where you see the whole day isn’t it.

Ah nice that you got out in the garden.

We’re taking the little one on a Easter egg hunt tomorrow so I’m hoping tomorrow is a good day for me. I’m resting for the rest of today to reserve my energy levels.

Do you have any nice plans for Easter xx

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Feel for you. I over did it last week. There was no way I could get up the next day. For the safety of all people, I had to take a day off. Slept 13 hours and rest all day. Pizza, toast, take ways are all on emergency standby.

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Enjoy the Easter Egg hunt xx. I can't believe I'm still feeling OK. I am being careful to rest and I still have aching joints, but the pain is milder. My son and his wife are expecting their first baby any day now so we're hanging around at home in the beautiful Peak District whilst waiting for the call to say that Katie is in labour 😬😬😬😬

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Oh wow how exciting!! I bet you can’t wait for some new born baby cuddles.

Well at least your being sensible and still taking it easy, I’m pleased your having a easier time with milder symptoms. Enjoy 😊

P.s keep us updated on the baby news, do they know if they’re having a boy or girl? Xx

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I've completely crashed! I was fast asleep by 7.00 last night. I dragged myself out of bed at 10.00 this morning having had a night of disrupted sleep. I walked my dog as my husband has hurt his back so can't walk the two dogs. Fortunately, we have a lovely walk where the dogs are able to run free. I just shuffled along. All the uneven ground made every step painful. I sat down at the end of the walk and a lady asked me if I was ok. I felt really embarrassed that someone should be able to tell that I was unwell. I'm back in bed now. I hope this is just a blip.

It's a boy! I'm checking my phone relentlessly to see if he's on his way!

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