Ticked off with idiot on Facebook!

[courgetteDOTcom]

There was a picture that did the rounds saying about one drug leading to another, I said I agreed but sometimes it's not that easy. I'm on about 7 different medications and I wouldn't give any of them up. I have Hughes Syndrome, fibro, IBS, long term PGP and migraines (all linked really) I've also got a thrombosed prolapsed pile that can't be treated for a few weeks because they need to wait for the swelling to go down and of course the Hughes (which makes me thrombophilic) is an added complication to it.

So, in reply, I got a message from this guy saying he could help. I didn't go into detail about my health on the link so I'm thinking and asked him what he thought he could possibly do. Still without knowing what medication I'm on he start telling me how this water can cure everything... So I went all technical, asked if it could replace ACT, which of course new didn't know what it was so the short version is I don't need medication, it only keeps me alive because I think it does (I guess I thought my way too a stroke as a baby and through my teens ) and magic water cures everything!

Ignore.
Don't engage.

Oh - are they linked? I never knew! Hughes, Lupus SLE (knew they were linked), migraine (sort of worked out the link with Hughes but never really got a doctor to say yes), PGP beyond pregnancy (dc2 is 6) and food intolerances here, creating IBS-like symptoms.

Bloke on Fb is a nob.

Oh but differentnameforthis I had fuuuuun (for awhile) showing up his stupidity!

GeorgianMumto5, everything is linked to Hughes. If you have it assume anything else you have is it. It works by attacking cells rather than anything specific so it can create anything and is the only disease that can cause venous thrombosis and arterial thrombosis. It makes it the worst autoimmune disease there is because anything you can think of as an example of bad, Hughes can cause it! It's unusual to only have one autoimmune disease due to it too, so take that example of bad and add the next example of bad to it, plus the randoms like fog, Raynauds, reaction to supermarket lights, the odd TIA, pregnancy complications... Allergies are likely to be caused by it too.

I've had PGP for 8 years, crutches for 5 years. Just had an MRI to try and get to the cause and an assessment with physio found that the muscles from my middle to my thighs just don't work.

oh my goodness. people like that are just plain dangerous. at least you had the common sense to see through him. sadly some must go for it to make him bother trying! worrying.

Well I never - I always assumed that Lupus was the bad guy, as that's the one that has caused me the most problems (not counting multiple miscarriages, which I lay squarely at Hughes' door, the bastard).

I only have minor problems from the PGP now, but, funnily enough, my lung muscles don't work very well and nobody knows why (nor cares, but that's my GP for you). This might be Hughes' fault too? I have strange and ever-changing allergies too, developed in recent years, together with increasingly complex dietary restrictions.

I really do hate having autoimmunity at times. Let's go and clout the fb guy on the head with our mobility aids, eh? Just for being so smug, ill-informed and not autoimmune. The law would back us up, right?

I read this on my pad and wanted to reply when I got to my laptop but forgot.

clouds it is scary. I looked up what he was trying to sell me and it's a tap attachment that costs $1,000s! There's also a lot of condemnation for it online (also a lot of their own writing that has myths exposed coming up on the first page ) I just hope that others are sensible too.

GeorgianMumto5, someone with Hughes once said that the lupus is the mild irritation they have. Do you have fibromylagia? That can cause long term PGP (guess how I know!) and can also cause lung pain. I spent a week convinced I had a PE when I was pregnant a couple of years ago. I couldn't do a return lap of the stairs, so I had to lie in bed every time I went to the toilet. I ruled out a chest infection, wasn't asthma and as I was still alive I knew it wasn't a PE so I brought it up at my immunology antenatal. They did the same ruling out I did and then started to poke the fibro trigger spots which I got all but one of. It was UPPER girdle pain. If you're using mobility aids that can make it worse because you're carrying all the weight your pelvis should take through your chest. You do sound very much like you're describing Hughes! I think the worst thing for me is it looks like I am making things up with lots of things happening to me. If you're on Facebook there's some good groups.

Ah...this is makes sense. How do I know if I have fibro? Quite a few of my relatives do. My GP is useless, so he won't have a clue/think investigating is worth his effort. I guess my rheumatologist would be the one to ask?

No walking stick now - that was while I had a humungous cyst on my ovary. Can I blame Hughes for that too? It wasn't endometriosis.

YY to people thinking I'm making things up! Most I meet at great, but there's always the odd

My PGP pain is lower than you describe, I think.

Sorry to hear about the loon on FB. I'm on there (in non-loon capacity). What are the good groups?

*are great.

If you look up fibro trigger points you can get someone to test you - just means pressing hard on certain places, not hard enough that it would cause pain normally but if you trigger it will hurt. Your rhuemie is definitely one to ask about it.

I wouldn't be surprised if Hughes is to blame for the cyst. I always feel weird blaming Hughes because he's a lovely guy from what I hear

UGP is different to PGP, it's across the top of the chest, it's a totally different group.

I've heard a lot of people say they were grateful for a diagnosis because they felt like a hypochondriac before. It just causes so much that it looks like you're making it up.

Try "A support group for people with Hughes/ Antiphospholipid Syndrome (APS)

Thank you. I will.