Sticky Blood-Hughes Syndrome Support
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Just having a good old whinge in to my computer!

Im sat up wondering if anyone else is up at this time feeling just as miserable as I do - with one symptom or another!

Been feeling quite good recently, organisational skills have been better,and less run down,getting more done and the days were just seeming to come together ok, until the past few days.....

Restless legs, just keeping me awake all night,its like torture. Im so tired yet i cant lie still for a minute without the need to stretch and move. Ive started iron again and that sometimes helps it, even my arms wont keep still.

My hair started to fall out in clumps again,generally run down and my eyes are so bad i can hardly read properly,everything is blurred to the point sometimes its like double vision. Just as we feel like were having an ok time bang it seems to hit again and remind us of it

Anyway moan over, and im so glad i can come on here and do this,and not bother anyone else here!! Luckily my 2 year old is away at nans so ive not got the risk of a 5am start, and apart from getting my six year old to school i can just collapse in the afternoon for a bit - but does anyone else feel like they just run on adrenalin sometimes and seem to do more when they are like this? Its like major overtiredness - thanks all xxxxxx

5 Replies

I think you just need a big hug ((((((O)))))))

Yes I think we all feel like that from time to time and I certainly am having a fit of the late nights this week thanks to a chest infection thats keeping me awake yes that mid afternoon crash happens too :-) x


Hi there, yes I am awake too with chest infection and flu virus.. and yet another allergic reaction to antibiotics.. (yawn and snore), can I join your club etc). However i will say that I have had less of this insomnia... unless I have an infection, since I got on top of my thyroid disorder.. which took a long time to get picked up, and this can often involve very tired adrenals also. I take magnesium if I get very restless legs! Hope you feel better soon. Mary F x


Thanks guys - i may try magnesium if the iron doesnt help - glad to know im not the only one up at this unearthly hour - yet i wish i could stop it for you at the same time if you know what i mean - get better soon xxxxxxxxxxx


Whats a recommended doseage for magnesiun?


Please do check with GP/Consultant... as I am no on warfarin or any of those, so just the aspirin twice a day.. also no plaquenil. I consulted a nutritionist for mine, you also need to be aware that in some people it can upset their stomachs. My children take it in the form of a spray through the skin! I take around 300 mg if I need it. Mary F x


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