I'm new to this :/

Hello everyone, this is all new to me but I need someone who understands. I feel so alone.

I am 28 and when I had my second baby in 2008 (I was 23) I suffered with multiple blood clots in my groin both sides. I was very poorly, nearly died. They said it was due to the pregnancy and I'd be ok after 6 months of warfarin. ..... I wasn't ok, I came off and in two weeks a clot built so bad that it was in my leg and up into my stomach. The pain was unbearable and I was hospitalised for a month. My new born baby was sent away so I could recover. I was discharged from hospital and still it took around 4 months to get walking again and for the swelling to go away.

I was diagnosed with Hughes syndrome and since then it's been hell. I have all these symptoms and am constantly in and out of hospital having tests and nobody seems to know what's going on. My legs are covered in spider and varrocus veins and also red blotches, I have one arm that is constantly numb and tingly, headaches and dizziness and the most recent thing is my memory. I keep completely forgetting everything it's so scary. Finally the last thing is they have told me I can't have anymore babies, this has totally broke my heart and I'm not coping with it very well. My INR level should be between 3-4 and I take 14 mg of warfarin daily.

With the physical appearance of my legs I feel so ugly and I don't even like to shower with my partner in the room as I think that he is thinking I'm gross. It makes me feel sick when I even look in the mirror.

Is there anyone who understands how I'm feeling? Please I just need to know I'm not alone.

(Sorry for long post)

21 Replies

  • Hi there - first off. You are never alone , although you may feel it at times. Since we don't like to talk about it yet look at you. If you force yourself to talk to other people join support groups you will see how much more common it is. I am a 48 year old with legs of a 70 year old, a love shape of blue, gray with a smidge of red. Do you use compression socks ? They seem to help, I'm in Florida so wearing socks is a little more difficult to wear with shorts. What no find our younger generation wear socks with flip flops. My point, doesn't matter what you wear, it's all stylish. Maybe ya get to the point where ya just don't care as long as ya feel good. But, if ya look around a lot of people have other things wrong we are all in this together !


  • Hi there and a big welcome to you, I am so sorry that you have had such a dreadful time of it, your story unfortunately is not unusual, you will have great support on here, and other members will be in your area, are you in Wiltshire? You definitely need medical care, with a team where they understand the condition. Is your GP being supportive, and if not would they refer you? Please let us know how we can help you further, Best wishes, and welcome again. Mary F x

  • hello charli. i cant help much as iv just been told that i have hughes and i get so frustrated with not been able to understand and very forgetfull. i had blood clot in lungs lat september and now on warfren for life. i get loads of bad symptoms. i joined the foundation last week and its the best thing i did as thay really understand. it can be a bit confusing for us new ones. best wishes.stacey. ps sorry about any poor spelling.x

  • Dear Charli

    Welcome to the group, you are not alone and there are several of us in the Bath/Bristol Area and we had a meeting, last year to set up a local group but we have not been good at following this up.

    There is a lady in Warminster called Anne who you might like to link up with and I will put you both on touch.

    Locally, you could askto be referred to Prof McHugh (not to be confused with Prof Hughes) at the RNHRD ' The Mineral Hospital', he understands APS (Hughes Syndrome) you can get an NHS referral to him. Prof Hughes only sees private patients at the London Lupus Centre and you could pay to see him.

    Keep in touch.

    Best wishes.


  • Hi hon,

    Welcome and glad you found us, sorry to hear you've been so poorly! We're a friendly bunch who will help if we can, good to hear you have a diagnosis and are on warfarin, there are other treatments that could help with other symptoms!

    I understand about your legs hon, having had clots in mine and the nice APS rash, plus lupus rashes I like to keep mine covered, have you spoke to your partner about how you feel? I'm sure they would hate you to feel so low! My Partner and I now make a joke about what colour mine are and what colours coming next! :-) :-) sometimes if we didn't laugh we'de cry!!

    Take care gentle hugs love Sheena xxxxx :-) :-) :-)

  • Hey Charli - Welcome to our group. Im so glad you have found us. First off and most importantly No you are not alone and YES we do understand! Dont ever feel you have to apologise for writing how you feel.

    Im so sorry you have had a rough time of it since your baby was born, that must be so disappointing for you after all the months of looking forward to the birth and now having two children to look after must be very difficult for you with all of this going on.

    Getting used to the warfarin does take time to settle down but you need an understanding and good APS Doctor as has been suggested above. Im sorry you feel as you do about your legs...can you talk about this with your partner and if not is there anyone else you can support you through this? I do hope you have a supportive family and friends who can help you at the moment. We are always here to answer any questions and help where we can. Please let us know how you are doing. x

  • Hello and welcome!

    I am so pleased that you have posted here, it is the first step in the next stage of your journey and you will soon pick up that this is a lovely supportive community where everyone is rooting for you!.

    I totally understand how you feel about your legs, I've never had the best set of pins but post-dvt I no longer have the confidence to wear skirts and dresses as my legs can swell quite badly as the day progresses. I am trying to get fitted for compression stockings through my GP but not happened yet. I take a diuretic to combat excess fluid and have found that the daily heparin injection really helps me with my symptoms.

    I echo all the comments above and look forward to reading of your progress.

    Take care, you are absolutely not alone :) x

  • Just saying Hi Charli, hello, and don't despair. We're all in more or less the same boat - with variations! - and will help as much as we can. Lots of virtual hugs!

  • Hello everyone, thank you so much for commenting. I'm actually quite shocked at how many replys I got. I forgot to mention in my first post that I'm getting married in August and I was wondering if anybody has any advise on what I can do about foot wear. I'm worries that if I wear dolly shoes that when I sit down my dress will show the lovely shade of purple that my feet are (it covers them when I'm stood)?

    I was transferred to the clinic in London last summer by my rematologist but the receptionist called to cancel as the Olympics were on and they were worried about the traffic but didnt rearrange my appointment. I've since moves to wiltshire an am now unsure of who I need to see to get re referred.

    I would love to come to a meeting with others who are going through the same it would be so nice to be able to meet people who are in my area and may be able to help me find out who I need to see at the hospital etc as my gp doesn't seem to have a clue. He sent me for a brain scan last week when I told him about the memory loss. Which I haven't yet had the results back.

    As for compression socks I can never get them on is there a nak to it??

    Thanks again for all your support its amazing. I'm so glad I came on here :)

  • Can you get some nice lacy stockings/tights to wear that will disguise your feet/ legs. Spoil yourself and go to a specialist shop that sell some really nice ones and see what they have. They are really in fashion now anyway.

    Yes call St Thomas at the number here and ask about where that appointment is and say its really important because your symptoms have got worse.


  • Hi there, I would as a matter or urgency, ring that receptionist and repeat back the conversation, re cancelling due to the Olympics, expressing surprise that you are STILL awaiting that appointment, if you are lucky enough to have a London based appointment, you need if possible to hang on to that access. I live out in Suffolk, and I hang on to mine for dear life! Best of luck with your wedding plans. Mary F x

  • Hi - Charli-- Ist off , WECOME-- you are among people whom share the same problems and do understand. numbness and tingling in arms ,hands etc. i still am dealing with-memory loss always a problem rash is a problem that comes and goes - there are meds that will help these, some work better for some than others - this dis-order has to be treated on a each person is different basis. i see many Dc's here in the states. plaqenil, gabapentin are meds that have helped me but i still will have the flares.We are alway 's here to offer any help and a ear to help you thru the rough times. Sorry to hear the times are painful and having a partner who understands is a huge help. are you in the U.K-- or here in the states ??? either there.or here - we are here for U ----- jet

  • It is possible that one of the other anti coagulants would work better for you, but you need to see a doc experienced in APLS to get that input Do try and reconnect with the

    London clinic.

  • Hi

    You're not alone, and there's always someone to help here. I know how you feel, as I was told they couldn't deny me one child but, no more after that. Had one very carefully monitored and managed pregnancy, and had a beautiful little boy. He's bigger than me now though. I just think of it as a blessing that I could have one, and am very thankful to all who helped me through it, not least my hubby.

    As for your wedding dilemma. Why not have some really nice E & E shoes ( entrance and exit shoes) for the ceremony and pictures, I have these for just such occasions. You could then get yourself some lower heeled ones for the reception onwards. You could even have them under your place at the table ready for you. Make sure there is a table to floor table cloth on your table so no one else can see your legs if it is upsetting you so much. I'm sure the venue will do all they can to help you on your wedding day.

    Hope this helps, and that you'll have a lovely day, and welcome to the site. They all know what they are talking about on here, and I have found it to be a sanctuary sometimes when I'm feeling really low.

    Love and hugs to you and your little one x

  • Thanks again for all your replies. It means so much. And your advice is great. I live in the UK but it's great to know there are people everywhere as I've always felt like this is just happening to me. I started out on warfarin and started to get an itchy rash so they moved me on to something called synthone. I continue to have the itchy rash and by realised it wasn't the warfarin so put me back onto it along with an anti histamine to control the itching.


  • You may be better on LMW Heparin injections like Fragmin as what you are describing is exactly what I had on warfarin and I have been much better on Fragmin plus other symptoms were also improved. This is because Fragmin and warfarin work differently and some people just do better on some things than others. You may have to fight for it though because its more expensive but you could ask for a trial to see how you get on with it.

  • That's a good idea. I've had the injections when I first had my clots along with the warfarin and they taught me to inject myself so I know how to use them. Would I just need to see a gp about that? Or would I need to be transferred to a hospital to fight for it? X

  • Hi Charlie, I would like to say to welcome to this wonderful wonderful forum, I sure could not live without it now!. As everyone has said we all feel your 'pain'!! Lol. I have found that any wee question you have, just ask, it will not be a silly question!. Someone will always be able to offer insight, or even a solution!. Im thrilled ou got so many repsonses, it just goes to show how many of us there is out there, and hope this offers you comfort. Your getting married in August (congratulations!!!) which means that your husband to be loves you!!! ... So get yourselves out for a wee dinner date, and talk, tell him how you feel, and all your worries, my husband is my rock, however, we cannot expect our partners to cope and understand if we don't, there are still times where my hubby does struggle, it's only natural....mi struggle daily, so why shouldn't he???. I'm going to finish how I started, ... Welcome to the most amazing place, this site will help you through! Sarahx

  • Hello Sarah thanks for your comment. Your right my partner wasn't with me when I got diognosed we've only been together 2 years so this is all new to him. I think that he finds it hard sometimes to know what to say bless him and I find it hard to open up about how I'm feeling. I just feel ugly and useless and I sometimes think it's someone palying a joke on me that I've found him. Does that sound silly? Thanks again for your support its so nice to finally have people who understand :) xx

  • Hi charlie welcome hun - having a condition with such varied and individual symptoms it is hard to get your head around for both you and your partner ;0) we all have similar storys but also very individual with how we cope and often with aps you get a cross over of other auto immunde conditions.

    But you will get control hun and stable with warfarin - i defo find the combination of pain and fatigue hard going - individually i cope but when bugged with both it makes me miserable but i keep positive cos each day can vary so i try to take each day and enjoy life - re your wedding that is fab news and you will be stunning! i went to see prof k at london who said about the leg rash purple ugly the vaires in ugliness! next time i see him he wanted his learner doctor to see it i explained i used false tan to cover it but he just didnt understand and said wow that is so much better - i just smiled ;) ever since 18 i have used false tan orange was better than red blotchy and purple! tans have improved so i would op for a spray tan then use some nice stocking and slip on shoes if you are a size 7 i am happy to send you a pair i got to try! keep them i could photograph them and show you i dont want no money for them ;) i used 2 pairs on my wedding day - i manage to have one baby my daughter is now 23! gorgeous and talanted but was born prem 2.10 i nearly died having her so was told i needed to be sterilised!! i was awful i so desperately wanted more children i was only 25 but once my hormones settled i realise i was lucky to have her and focused on my job to feel the gap once rachel was at school - so i fully understand how daunting this is for u life so unfair hun ;-)

    take care sending you much love and hugs xxx message me if you would like me to send the shows after you seen the pic of them. hope you get seen soon in london you will feel so much more in control once you do xx kathy xxx

  • Hi kathy thank you so much for your kind gesture but I'm a size 5 hun. Does fake tan cover the marks? I so I will be getting some!! I will try anything to stop feeling as low as I do get. Especially as the summer is coming and I've alway been a shorts kind of girl.

    I have two beautiful children, both girls, who I love very much but having the option of not having anymore has emotionally killed me. Just the thought of never feeling it move inside me or that feeling you get when you first hold it. I've always wanted 4 children an my partner will never be a father. (Although he is very good with te girls) He went and has a vasectomy so I could have my coil removed as it hurt me an I'm not allowed any other form of contraception. I just new to find a way to get over it but its hard when everyone around you is pregnant.

    How old were you when you got diognosed if you don't mind me asking? Xx

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