Waiting to hear if it's lupus, UCTD, or ???

[Merrythulu]

I'm at the stage where, having been ill on and off for 36 years, with a drastic deterioration after having DS3 and then DS 4, we're now all on our knees as a family. In 2009, we were told it was Vit D deficiency and Fibromyalgia, which meant that when I fell pg with DS4 we decided to push through, have him, and cope with it. Since having DS4 it's all just got worse - at one point they thought it was MS, and while thankfully it isn't, the rheumatologist I got bounced back to from the neurologist now suspects that it might be UCTD or lupus.
Apart from the fact that DH is working full time, (3 of those days at home) looking after everyone, and I'm pretty much useless, we're also worried he might lose his job and get stuck in the awful benefits situation that anyone who's disabled and jobless is facing. I haven't applied for DLA yet, because we still haven't got a firm diagnosis other than that of CFS/ME, although I did start filling it in yesterday, but had to stop due to fucking fatigue.
I just thought I'd ask if there was anyone who'd been in a similar situation, where a DP has had to give up work to look after you/dc's, and how you did it? And if there's anyone out there with lupus, I'd really like to hear from you too, and how you're getting along!

Hi, it sounds exactly like my illness too! I had suspected Guillian-Barre Syndrome 18 months ago and ended up in a neurological unit for 3 weeks paralysed from the chest down and my right arm was paralysed too. I was in a wheelchair for just over a year (I applied for DLA but got turned down, got it on appeal though) I have had to give up my job, my horse and my social life and hardly ever leave the house. I'm not entitled to any benefits because there has been a mix up with my NI contributions and DH earns too much for us to get any income based ones.
They also thought I had MS too and then I was sent to a rheumatologist who said I had Fibromyalgia. I am now taking medication for this and I feel so much better but I'm still very weak and get terrible stabbing pains everywhere. I also had an elevated ESR level and ANA positive which can indicate lupus but he doesn't think it's that. Basically I've just been left to get on with it, I had an OT come round to give me a bath board and perching stool for the kitchen but that is all. I'm not bad enough to get any help with care but then I'm not well enough to do anything either.
I have an 8 yr old dd and a 9 month old baby and I just get on as best as I can.

Sorry to hear that you are really struggling, I'm always here to listen if you need a shoulder xx

Just heard back from the rheumatologist today - the urine test was fine, but the bloods obviously weren't. I was a bit by how she's put it though - she said, " there isn't any evidence of active tissue disease but the doctor wants to see you again and start you on some hydroxychloroquine." So I'm guessing that she thinks I have something then - and I assume lupus because the RA was ruled out when I last saw her in 2009.