Research

[Ash0507]

Hiya where would I find good information for aps as want to get as much info as I can. Thank you

[jessielou]

Hi Ash,

I’m sorry to read of the problems you’ve been having, obviously being on here will help, there’s a wealth of support and information available to you. I would also join GHIC, Graham Hughes International Charity, there’s lots of information about Hughes and video clips answering lots of our questions, straight from the horses mouth (sorry Professor Hughes😀😀), the admin team on here are great, plenty of knowledge and understanding all gained from experience of living with Hughes syndrome and other related conditions.

This can be a frightening time, but knowledge is power, arm yourself and know you’re not alone.

I hope you start to feel better soon.

Take care, gentle hugs Sheena x 😀🌸🌸

[Ash0507 in reply to jessielou]

Thank you, I've bought a book from Kay Thackray to understand it more, hopefully that will help.

I'm so poorly at the moment where it's slowly attacking everywhere and seem to lose memory everyday to the point I now can't do simple maths which I hate as I'm an intelligent person and now I feel stupid.

I've asked to be refered to st Thomas hospital to a professor which specialises in it but want to gather questions if I do manage to get an appointment with her. My local one doesn't know much about aps and it's warfarin or nothing basically and neither suit me so I'm stuck unwell. X

[MaryF Administrator in reply to Ash0507]

As well as our charity website, this paper is always a good one to read and to pass on: the-rheumatologist.org/arti...

MaryF

[GinaD in reply to Ash0507]

As I have posted before, a few years ago I went over to "The Dark Side" of medicine -- Functional Medicine. I went on a detox diet, cut my carb consumption waaaay down and -- felt like I was in a brand new body. Of all the dietary and exercise adjustments, the 2 which I have noted provided the most immediate improvement are: going into daily ketosis by fasting from dinner to breakfast, and having a breakfast of only protein and fat and green veggies (a smoothie with almond butter, almond milk, chard and a tad of blueberries and sometimes with a '90 second paleo mug muffin.' By keeping my body in ketosis for 12 - 15 hours I notice my mind is much, much sharper. I will relent and eat carbs for lunch and within an hour I'm sleepy -- the degree of sleepiness directly related to the number of carbs. And exercise? Bursts! Simple 1 minute high intensity burts. Just 1 minute. A few times a day every other day.

But that's what works for me. And everyone's biochemistry is unique. But you might read up on functional medicine and experiment with diet to see if that helps.

And by the way -- the basic argument evolving from functional med studies is: food acts as "keys" to biochemical hormone cascades. The Standard Western Diet keeps one's body in inflammatory mode nearly all the time because carbs trigger the inflammatory - attack mode. By fasting (our ancestors were right about fasting being a good thing!) triggers the recovery and repair mode wherein the body quiets down, rebuilds and repairs neurons.

[Wittycjt in reply to GinaD]

GinaD would you mind pm ing me that 90 sec paleo muffin recipe? Also tell me about your smoothie i do one with kale...thanks