Sticky Blood-Hughes Syndrome Support

Feeling rather sorry for myself

I am feeling pretty awful, the amount of pain i feel daily is increasing and im stuggling to cope which in turn makes me feel a bit low. About 14 yrs ago i was diagnosed with APS whilst i was attending the Rheumatologist for help with Athritis pain. He recommended i take low dose aspirin for life, well it turned out i wasnt able to take them as they caused me to have bad tummy problems, which i already took medication for. So for the next 13 yrs i took nothing to thin my blood or see anyone about the problems. well apart from my old GP who give me no answers.

About 10 months ago we had a new Gp in our health centre, i went along to visit her as i was having a bad time of it with worsening pain and memory loss which i hadnt realised was a symptom until very recently. Long story short i spoke to new Gp and she refered me to a Rheumotologist. He put me on plavex, took bloods and told me come back in 12 weeks which is now going on about 20 weeks, anyway i do have an appointment for this friday at last.

So much for monitoring my bloods haha big joke. Anyway when i did visit him for the first time he examined me and told me i had fibromyalgia as well, which explained a lot to me as i had been so unwell with no explanation for many years. What i would like to ask though is, firstly does hughes syndrome cause pain and discomfort similar to the fibromyalgia, or is it the fibromyalgia that has been causing my pain and discomfort and memory loss problems all along, sorry this is so long i took days to post this as wasnt sure how to explain but decided i would just write it as i felt it is affecting me, thanks for reading this. love Monica xxx

7 Replies

well I wonder, I had been having leg pain, etc for a few years prior to my PE, and then when I went on coumadin it disappeared. I wonder if it was because my circulation wasn't as good with the thicker, sticky blood.


Hello there, firstly work with the positive, you have a new and on the ball GP, that really is half the battle, and it sounds like your up and coming appointment will reveal more helpful information. I understand the discomfort, my bath tub, fitted with jacuzzi gets a real pasting if I am feeling very bad. All the symptoms you describe do and can occur with some people, and your GP appears to be in the role of helpful detective currently - so may reveal other overlapping things which could be doing this as well. I hope perhaps you can ask for a swift referral to St Thomas' so that your GP can work with them to fine tune things. All the best Mary F x


The symptoms of these two illnesses are so similar I think it can be hard to define which is causing them.

Memory loss is very typical of Hughes Syndrome though.

I hope you get some answers from the Rheumatologist.

I find it helpful to give my Consultant a list of symptoms and problems that I am suffering with. Reduces the risk of them getting disracted.

Take Care Sue


Thankyou for your replies i apprecate it. Im not sure about St Thomas hospital we are in wales and i doubt very much we will get refered to another hospital outside wales, however i agree positive thinking will get me through, i am just having a bad time right now, i will probably cope far better in a few days, even if the pain level stays the same our coping mechanism sometimes is better than others, many thanks for your support xxx


I really hope things perk up for you really soon, and I am sure somebody on here will know about the best person to be referred to or go and see in Wales, ask away, in a new question and see what other members have to say . Mary F x


I live in Wales and i used to go to St Thoms ask your doctor to organise it


Thankyou Taffydaffy. Well i saw my Rheumatologist today he was happy with my bood test results i had last time, so is taking me off the Plavex as he doesnt think i need them seen as i not had a major clot and they can cause bleeds, good news is he is refering me to a specialist health care worker in Fibromyalgia to see if they can help me to manage my pain and discomfort, he doesn twant to see me for 6 months now, so all in all things were good as far as hughes syndrome goes, i appreciate your support thanks very much xx Mon xx


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