I marked my spot and never came back 
OK, so here's the story. Until 2005 I didn't think there was anything wrong with me, apart from being a hypochondriac, being very cold and the fainting a lot! I had an early miscarriage but it was my first time so we weren't too worried, then I got pregnant again straight away and I went into labour at 19 weeks, our daughter was born alive so they knew something was wrong with me and I got lots of testing. From that we discovered the Hughes Syndrome and I went on to have 3 more little girls and just before Christmas our first son. All my pregnancies have been healthy although irritable and I deliver early. Our son is the earliest at 29 weeks, he's still in hospital which I'm finding a little strange and 
being separated from him and he's in another town so I can't see him often.
Anyway, a few days before the 19 weeker was born I had a nasty fall and have had PGP ever since, I've needed crutches for the last 4 years or so. I saw the Lupus clinic after my diagnosis (Hughes is generally covered by Lupus clinics as the nasty big brother) and they found out from there I get TIAs rather than fainting (hardly surprisingly starting at 13 when I went on the pill for my awful cycles) I have Raynauds which is why I'm cold and of course it explains all the general aches and pains I get and a few random things I never expected.
In 2011 I was pregnant with our youngest daughter and had a week where I could barely get out of bed, I could only do one direction on the stairs without ending up ill, so needed to go to bed every time I went to the toilet. I stupidly convinced myself I had a PE (stupidly because being a thrombophiliac I'm at greater risk so I should have got someone to take me straight to hospital!) but waited from Monday until my antenatal clinic on Friday before telling anyone! By that point I had ruled out a PE as I wasn't dead, I knew it wasn't asthma and pretty sure I didn't have a chest infection. As I see rheumatology when I'm pregnant they were the right people to see, they went through the same checks I had and came to the same conclusions, she then started to poke me in particular places and ask if it hurt... I had all but one trigger point for fibromyalgia. I had an assessment with an anaethatist to see if I could have an epidural as they'd failed in the past and he found that area of my spine is badly damaged from the fall.
Then last year I was out with Mum and my husband and was getting really bad sulphur burps. Convinced I was dying they rushed me to the out of hours GP. I knew I'd had it before but I guess I'd never gassed the car out before! They didn't really come up with an answer, gave me gaviscon to try and control it. I carried on like that for awhile, bloating up painfully after a meal, it hid my pregnancy for awhile as I looked about four months, I lost about a stone as I was unable to eat and losing everything I did eat pretty much straight away with painful runs. Calmed down in pregnancy but since the baby was born it's started up again. The GP thinks it's IBS but couldn't do much testing before as I was pregnant, I'm going back on Friday.
I currently feel like I'm falling apart, my back is painfully spasming regularly (which is new), the IBS (or whatever it is) is back with sulphur gas going both ways, my tummy constantly moving (for want of a better word), constant migraines (also new! I've had the odd one but nothing like this) and of course to top it all off I'm trying to express which is leaving my boobs tender.
My eldest had a couple of nasty infections last year which left her with CFS, she was on part time school for the last half term of the academic year but hasn't had a day sick this year 
she's still not brilliant, but she's working hard to keep going, the insoles she got a few months ago have really helped to reduce the pain she's in which has made her less tired.
Sorry for the essay just nice to get it all out because it's really getting me down at the moment. No one IRL seems to appreciate what I go through, I had a conversation with Mum who'd heard on a programme I think that TIAs are a sign of something and I should get them to check them out, I kept saying "Yes Mum, I have Hughes Syndrome!" but she doesn't appreciate what a nasty disease it is so she can't understand that it's about what you'd expect!