Finally found somewhere: Well I have commented and... - LUPUS UK

LUPUS UK

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Finally found somewhere

6 Replies

Well I have commented and asked a question so thought I had better introduce myself and start logging. I am a stay at home mum to 4 little ones aging from 6 months to 7 years. I have had various health issues since I was a teenager but in 2002 I was admitted into hospital where they said I probably had some sort of autoimmue thing but they weren't sure which it was and sent me home. Then in 2006 after my 2 boys had been born and I had a few miscarriages I got a sore leg that wouldn't go away finally after a few more months I was referred to rheumy and then another rheumy or 2 later I have the diagnosis of probably sle. I was put on hydroxychloroquine given steroid injections and various pain killers.

Since then I have come off the meds when I became pregnant again and as I am trying to breastfeed I have stayed off the meds (not my best plan possibly :-) ).

I am so happy to have this site as I feel that although family empathise they do get fed up and can't really understand what it is like. I also get the oh poor you pity thing from some and that drives me mad.

I am really looking forward to speaking to people that understand.

All the best to you all

Laura

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6 Replies
melj profile image
melj

My god lady how do you cope.I have just the 1 daughter and struggle some days...but having a good family keeps me going would not be without them.But like you feel they get a little tired of my general moans and groans. Take today for instance got the old John wayne walk back not walked this bad for quite a while but battle on and hope its just a blip and will pass quickly. Just keep taking the pills. Ido worry at times about the cocktail of drugs i take and the amount of pain killers.. but needs must. Any time you feel like a good moan (thats if you get the chance with all those children) feel free to chat take care look after yourself laura

in reply to melj

i love it I so do the john Wayne walk that really gave me a giggle :-)

kb281 profile image
kb281

Hi Laura

Wow you must be a busy lady! I just wanted to say hi and say I'm new on this site too.It's great everyone cares and understands.I wanted to ask you about the Hydroxychloroquine.Did it help with fatigue at all?

I get the "brain fog" as we have decided to call it on here-( cant talk sometimes ans loss of memory ect)I thought I was getting dementia but it's part of Lupus and I feel so much better knowing there are other like me (loopy loos!)

I felt I was going mad,but other here have been saying the same thing!Anyway look after yourself and feel free to chat to me !!

Karen

in reply to kb281

i never have been able to decide if I have baby brain or lupus brain either way have serious brain fog pretty much all the time

hels profile image
hels

hey im new on here too just got back from hospital im in so much pain and they tell me i have a mld case of lupas im so scared i feel like im hitting a brick wall i have chest pains neck spine arm feels like its burning inside toes u name it and they tell me i have an injury even though i said i have lupas i really hope u dont mind me telling u does anyone know much xxxx

hels profile image
hels

oh and i also have 4 children lost baby at 16 weeks preg this year thats how i got diagnosed xx

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