Sticky Blood-Hughes Syndrome Support

Suffering at the moment!!

Does anybody else get these episodes where everything hurts, and you cant sleep with restless legs and muscle pain, am not too sure if its the raynauds or the aps, but my eye is hurting again,my left side aches and i get throbbing in my muscles and the jolting/twitching in the muscles wakes me up - then i get burning pins and needles on the side i sleep on, last time this hapened i wentto hospital and they seemed to think it was a thrombotic episode - yet did nothing with me i just stayed til it subsided - the last episode lasted 16wks, and ive seen mild improvement with heparin and i start warfarin soon, however they wont give it to me til ive had a lumbar puncture to rule out MS - which seems typical with a lot of aps sufferers. I feel like im going mad - im so tired x

7 Replies

I am so sorry you are having such a horrid time, I myself have multiple overlapping conditions, any form of virus on top of the norm, makes my body behave like this.... and my restless legs have been far better since taking magnesium! Hope you feel better soon. Mary F x


thank you - il give it a try! x


Yes, and do check with your consultant/GP... it is alright for me, but as well to check x


I suffer with the symptoms you describe but am not sure whether it is the SLE or the APS or the Reynaulds. Whatever it is horrid and I sympathise with you. I am on Warfarin and did ease a little when I started taking this but not gone away completely, again gets worse when I am in a flare. x


Hi Emma welcome to the group i also have these issues i found the plaquinal helpped a bit with these issues but so far not found a soloution i was reading about some treatments on restless leg but my brain fog is working overtime so when i remmeber where it is will post it



Hi Emma

Yes I get the symptoms you describe, I have Primary APS, and no other illness, or at least I don't think I do, I guess once I get seen by an APS specialist I may find out more. I drink tonic water for the cramps as it contains quinine, sometimes it helps and sometimes not.

Nearly 20 years ago, I had a lumbar puncture to check for MS as my sight kept going, then I couldn't walk and was in a wheelchair for some 8 years being told I would never walk again, back then I was told I don't have MS but they didn't know what I did have! I never gave up trying to walk though, and after 8 years managed to get out of the chair and teach myself to walk again....

I only got diagnosed last November.

Keep your chin up, sometimes it takes a while even a long while, but we will all get there in the end :)

Smiles to you



Thanks all x


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