Sticky Blood-Hughes Syndrome Support
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Symptoms of Hughes

Hi, I had multiple PEs two years ago, followed by additional PE and then DVT last year - now on life long warfarin. Do other people feel absolutely 'knackered'. My job is incredibly busy, however I struggle constantly at the moment, forgetting things, simple words often! My lower leg swells although I do travel nationally (do take breaks as necessary!), my back aches a great deal, feels like a constant toothache! Do other people feel like this and how can I improve it? Any ideas or suggestions would be welcome! Thank you x

5 Replies

Hi Karen

welcome to the forum hon, hope not too bad today. The fatigue you describing sounds pretty normal with aps, a lot of us have it and the pain too. There are meds that can help. Do you have rheumatologist or haematologist you could talk to about these symptoms. The Hughes foundation website has loads of info on symptoms and other conditions that some of us have as well.

Things i find that help, listening to your body and resting when you can. I use heat pads which offer a little relief with pain. I take tramadol, pregabalin(new to me) plus bucket load of other meds.

I suffer with pain in back. So i know how you feel.

Keep asking we here to help and understand.

Take care gentle hugs jessielou x xxxxxxxxx :-) :-) :-)


Hi karen

Welcome to the group i hope you get all the support you want from the forum. I think Jessie has coverd a number of things i would of said (great minds and all that lol) i would also recommend reading the HSF forum you may want to hve a look at another blog which is support information you and you family may find intresting.

I would also recommend if you are having constant pain maybe be reffered to a Pain Mangemnet specalist .

In answer to your main question on management, it is a case of resting when your body tells you to and managing what you eat and drink moderatly and consistanly and also take things easier if it takes you longer but less pain its better than struggling all the way through and paying for it at the end.

Hope to keep speaking to you



Thanks paddy, not bad for Hughes foggie brains. :-) :-) :-) . You ok today?

Take care. Gentle hugs jessielou x x xxxxx:-)


I find the pain and fatigue very trying, however I pace all my jobs, also my exercise and structure in rest, I refuse to not exercise or live an uplifting life with my family, and travel quite a bit, including protracted camping holidays... I am often sniggered at due to the amount of hot water bottles I take everywhere involving a tent/festival etc. M


Hi All

Many thanks for your replies - I agree, it is about managing it, listening to your body, resting when able - wish my job would allow that a little more - however will take heed and hopefully things will improve a little! Thanks once again for your replies, is helpful to know others have similar symptoms and how to best alleviate these. Karen x


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