Sticky Blood-Hughes Syndrome Support
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anyone else find APS much worse since a clotting ep?

I would never have known I had a condition until it caused my stroke,; however, looking back, it explains a lot. MAybe it is just awarenes of a few things, but I find now, 3 year spost-stroke, that I seem to have a lot moe APS type symptoms. Anyone else find this? Also, is warfarin supposed to simply stop the risk of clotting or is there any suggestion it also deals wih other symptoms pf APS? Thanks, lovelies. E (feeling blargh nd dead-heady).

6 Replies


I had an appointment at St Thomas in the week and the doctor said the warfrin once settled should help with the brain fog and memory loss and dizzyness. I'm tired today. Even though they have upped the dosage of my anti depressants to help me sleep as insomnia bad. I'm new to this but have a lot more other symptoms. I'm hoping to ring more answers. I will let you know when find more information.




I find everyday is different, some days my head hurts all day mixed with brain fog, aching stiffness and difficulty focusing on the pc screen and feeling feeling down. Sometimes those days my INR is within range. Another I have a clear head can think and see ( never pain free though). I can't figure it out.

I wonder if your tiredness is are worse by increased antidepressants as they make you tired until you become used to them, mixed with insomnia it's understandable that you are tired.


I agree with you. Mine was not diagnosed until I had a stroke either despite also having a PE before that. I was misdiagnosed. I also think that each time I have a really bad flare I never really go back to preflare status so I do think I'm sliding somewhat. Like you I'm not sure what to do about it either as they keep saying let's see what your blood tests are like but as usual they are bloody normal so no one does anything and time keeps marching on.


I am so glad that you both understand. Its bloody frustrating. I keep telling the doctors till blue in face that i dont feel right. My arm and hand is aching and the hand therapy wax bath isnt really doing anything. Ive been today and got all the aching in arm. My pulse is still leesoned in the ulna artery. I am like you Jade. I have days when I seems to be unable to co ordinate, speech and memory difficulties, banging headache sometimes sharp pains in back of head. I am dizzy, sweating and seem to be red and hot and then this makes me feel faint and yucky. But other days i have no headache, bit foggy head, but can balance better. I do have gyni issues going on at mo. I have a inflammed fallopian tube and lyph node in groin which might be causing swelling in legs. I have bladder problems so under physio but they cant sort as need to see urology and still await an appointment. Its a waiting game and getting the doctors to listen. One doctor said swelling in legs nothing to worry about but had the swollen legs for nearly a year and that not normal. Ive never had swollen legs well only when presgnant. I do think its a connection to symptoms. But need a doctor to listen and get it sorted. I know something not right. I just want to get back on my feet and start trying to manage this illness.

I have been on the increased dose of anti depressants for two days now . Its still not working but I know it can take a while. I think pain is waking me up as I cant get comfy and both hands keep waking me up with numbness and pain. I get pain in the groin all day long but sometimes its niggly and sometimes its sharp pain. Once i can get to see the right people I might be able to take control of my life.

Its always the way Apsnotfab that the bloody blood test always seems to be normal. My dad has diebetes, hashimoto thyroid probs and an immune system problem, which I keep telling medical profession. They took five years or so to diagnose hashimoto as he kept passing the normal thyroid blood test. Just gonna keep turning up at the doctors every two weeks untill they listen. not sure what else to do. I have a few consultants to see so bug them too. Hope St Thomas come up with some answers.

Well keep in touch as its good to talk. Ive been a bit down last few days, but soon i will pick up and back to fighting mode.

Hope you both have better days and hope you get your answers to.

Andrea x


Same to you xx


I too have noticed that APS symptoms worsen with age/time. Once upon a time I naively thought doctors might want to therefore treat my symptoms more aggressively as they appear. My favorite responce? " you're getting older. That's why."


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