I'm new!!

Hi, I am new to this site, to be honest found it while doing a spot of research so decided to join and give it a whirl, have been reading your questions etc but thought I would pluck up the courage and say hi. I am not the best at talking about myself to be honest so here goes.... if anyone can share any experiences similar to my own then I would welcome hearing from you. I am a pretty positive upbeat person so would love to hear from similar people

I am 37 and havent always had the best of health, I have had a pacemaker for 13 years and have a condition called Vasovagal Syncope which means I have seizures and black out a lot. I have been having a lot of chest pains, joint pain, swelling of knuckles, elbows, knees etc and generally feel exhausted all day every day, I have been like this for years but recently my gp referred me to a rheumatologist who diagnosed me with Antiphosphilipid Syndrome, Lupus and Raynauds. It was all a bit much to take in but then 2 weeks after this I became extremely unlucky and ended up in A&E with a PE on my lung. I am 7 weeks on, still off work which frustrates me immensely, still in pain in my chest, still feel exhausted and trying to keep my spirits up even though deep down I am terrified what all this means for me and my future. I am on Waferin and will be forever, on clexame injections as my INR is all over the place, on Hydroxychloroquin for the Lupus, morfine for the pain so I rattle when I move haha!! I am geting married next year and I just want to know that I will be ok I suppose, I know thats probably a rididuculous thing to say as noone knows what the future holds, but I am scared and although I have the most amazing family and friends ever, I feel alone if that make sense. I am trying to stay strong and positive.

Thanks for reading this


33 Replies

  • Hi Sam welcome to the site ;-) my names kathy i had (APS) hughes diagnosed 22 yrs ago aged 25 i had recurrent clots on the brain and now i am 47. I have been on warfarin ever since. I dont have lupus but recently diagnosed with fibromyalgia following flu at xmas had extreme fatigue, a flare of my APS tachycardic etc still battling the fatigue but overall much improved and was back working just had a minor blip so off work this week...

    Congratulations on your forth coming wedding i got wed 2 yrs ago sept 4th to andy. I have a puppy rosie who is so cute but naughty yet more plants brought into house again today!! but i love her so cant stay mad for to long.. my daughter rachel is 21 talented signer actress and dancer i am so proud she was a wee baby born 10 wks prem but you would never know that now.. and of course not to forget our budgie jimmy he is so old i have lost count how many years but he is so talkative and has a liking to wine and nachos!! he also can imitate rosie very well...

    I am so glad you have joined us here we are a very friendly bunch all with an array of symptoms but all very positive and supportive... i tend to be a very optomistic person i believe only worry about something when it happens lifes to short to worry about what might, turn negatives into positives eg my experience i use to be more understanding in my job as i work as a nurse and to be a good friend and listener...

    you my sweetie are on the right treatment now and despite the horrible experiences you have had to face it seems you are a fighter and very driven! that is always a good thing..to have a pacemaker fitted so young must have been tough and to suffer black outs, seizures just doesnt seem fair...i wander if they now can relate your heart condition to hughes? another thing you will notice about me is i can never write short replies and my god to chat to me is even worse ;) mind you i do alot of listening too but do butt in as i think of something to say cos my memory is shocking at times!! anyway hun will finish off now to allow others to say hi love and hugs kathy xxxx

  • Hello Kathy and thank you very much for your response, its good to know your not alone!!

    It made me giggle when you mentioned your puppy, a day before I got my PE we collected a new puppy a Sussex Spaniel from Cambridge called Ruby, although the timing was not the greatest she has been a god send in keeping me company at home while I recoop, although she is a little madam sometimes!!!

    I love your philosophy on live "only owrry about something when it happens lifes to short to worry about what might be" I am with you on that one. I work as a Project Manager so its a little demanding but I am a people person and like to think that I am a good listener too!!

    I am definately a fighter, been through a rollercoaster of a life but hey I am stil here and stil smiling. They say that all this is not related to my vasovagal syncope and the reason I had my pacemaker but it could explain the frequent chest pains I get as that can be part of Lupus as I understand it.

    One thing I am struggling with is eating, I have lost a lot of weight since all this and my appetite has really gone, although when I do eat, it feels like food is stuck in my chest and repeats on me, not sure if this is anything to do with being on warferin, any ideas?

    Thanks again for your response, take care Sam x

  • Hi Sam, like you & ruby, rosie came at the right time for me too.;)After several attempts at work after initial flu at xmas i was then put on longterm sick from the april when rosie joined the family. I kinda slept when she did and played together, took her for walks but also pacing myself setting goals to go a bit further each day, the only thing different was i did manage to get to the loo in time! she would look at me as if to say look mum im peeing after wagging her tail as though she was a good girl!! 6 months on she still has a few accidents thank god for wooden floors! rosie is cross westie & king charles i bet ruby is lovely, i couldnt be with out her now.

    Project manager that sounds very posh ;-) and demanding do you work full time normally? like paddy said you dont want to rush back. i have been so supported at work, i am still doing a phased return as the ward i work on is so busy with an unpredictable work load so i am currently working in pre assessment i really enjoy it...but since rachel was a baby and being unable to have more children i enjoyed to study so when i did a course i dropped a day (then i worked 4 days on an hdu ward) after the course i stuck to 3 days which at times can be to much but when i can i then work extra on the bank. This i was doing regularly before the flu, felt so well had lost weight walking daily so hence why i wanted a dog as an incentive to go out in the rain etc unlike you tho i have gained weight with increased apetite since amitryptylline was increased to 50mg.and when i was so profoundly fatigued even the stairs felt like everest! the mountain not windows ;-) so this didnt help being so inactive which i actually hated as i dont keep still normally always a busy bee socialising mainly...

    hope someone can help advise with the weight loss and appetite as like a car to run smoothly we need petrol... hence mine keeps stuttering i got to much fuel on board!! well i must go now cos my soaps are on... sad i know but its great having someone else acting out illnesses family fights etc just amazing tho how they can be paralysed one episode then up running the next!! if only we could be the same (not the paralysed bit tho just up and running) take care kathy xxx

  • Hi Kathy sorry for the delay in coming back to you I have had a few weeks of going backwards and forwards to hosptital on various appointments. Thank you so much for your message, its lovely to know someone has the same sort orf approach to life as me, keeps upbeat and stays positive and no point worrying about things that you cant do anything about.

    You made me giggle about Rosie, we too have wooden floors downstairs, they are such a god send Ruby is a Sussex Spaniel, they are quite rare so we waiting a while to get her, she is doing well with her number 2's going outside but still having a few little accidents inside, its more like she wont go outside on her own, if you go out with her she will wee but she loves to be with you all the time. She is definatey hard work but well worth it, she is such a cutie and is great company!!!

    Being a project manger isnt posh, I have been at my firm for 16 years so feel like part of the furniture, I enjoy my job immenseley and am very lucky to have such a supportive boss but I do wonder what my future work life will turn out like?

    I am trying to eat more, although I do find it difficult to eat more than a small portion, thats another reason why I want to get off the morphine as that doesnt make you feel any better and gives you a very sicky feeling all the time. My finance Lee is always trying to feed me up tho bless him haha!!

    What soaps do you like, I am an Emmerdale fan, your right, you definately can loose yourself in someone elses problems for half an hour, even how ridiculous the story lines are haha!! I am a big fan of "Dont Tell the Bride" at the moment, makes me giggle, the groom has to plan the whole wedding for the bride without her having any say in it, the one the other night the poor bride had to do a sky dive the morning of her wedding.... I told Lee forget that one I wont be doing that haha!!!

    Thanks again for responding to me, you sound one amazing woman.

    Best wishes Sam.

  • One of the things I have learnt is that no matter how supportive your family is and no matter what they do for you, they have absolutely no idea what you are feeling or can come close to relating to what you are going through like somebody else suffering from the same condition/s.

    I have got to the stage now where even though I have just been dx with Hughes & Sjogrens the eyes just roll and the brains have switched off with an "oh this is just another thing to add to her list" look.

    What they dont get is that this is THE thing that has caused all the other "things" that have made their eyes roll over all these years.

    This is why I set up my support group for FM and now knowing that the same support is there for this condition is really helpful (but they dont get that either!)

    Thanks Guys!

    Sammy you have come to the right place, I am sure you will get the answers you are looking for.

  • Hello and I am sorry to read you are not getting much support at home, I am very fortunate that my family and friends are extremely supportive but i suppose its hard for them to totally understand and to be honest I dont like to think of them worrying about me so try to stay positive.

    I am not sure which area you live in and if there are support groups locally to myself but maybe this is something I can find out about via this site. Thnak you.

  • Hi Sam

    welcome to this site, you have come to the right place for support and info. The Hughes foundation website has loads of info on this condition and links to further sites about lupus etc.

    I have Aps, fibromyalgia and lupus symptoms overlap etc. I had a dvt and pe in 2007, is all pretty scary, but knowing there are others who understand helps me.

    Hopefully the meds you are on will kick in and should start to feel better soon. Some lupus meds take a while to work tho, so give them time.

    Rest is important. Trying not to overdo things. I have hot baths use heat pads etc. Anything to relieve the pain.

    Go easy on yourself hon, we here for you. Glad your family and friends are supportive a lot of us have issues with being understood by our nearest and dearest.

    Take care, gentle hugs jessielou x xxxxxx :-) :-) :-)

  • Hi Sammy,

    Welcome to the group as the others have said we are a friendly bunch and try to help out with support and advice where we can.

    Regarding being off work i can totally understand i have been on long term sick from my company since 2008 and especially when you think you can go back, but i would listen to the Docs and do not try and rush yourself back as i have learnt from previous experieance you have to give yourself time to rest and get the engine starting again and hopefully your employer is understanding. I like you rattlle and i am now taking the Hydroxychloroquinlike you and find it helps take the edge off i was also on Morphine but i was on it two long so was refered to St Thoms pain managemnet team and on better meds that do not have such a advers reaction might be worth asking about seeing a pain managemnet team.

    Do not worry about our INR mine is still all over the place and i am on waferin it is one of those things that are individual some people INR stable quickly other are up and down like a yoyo as you take the clexane this should gradually stable it and also food,drink and stress levels can have an effect but if you at all worried ask most of us will of gone through a similer experience to you and on that subject congratulations on your forth coming marriage me and my wife got married in May of this year, having APS will not effect you or your day you need to pace yourself and rest when you need to, get help so stress does not over take everything and above all enjoy the process and the day because it goes so quickly.

    Reading you above post with family i posted a while back some info books and information which may be useful to you and your family about APS and Hughes paitient may be helpful for yours as well.


    Hope to sppeak more to you oh by the way where are you based as there maybe people on the forum who are near you already.


  • Hi Paddy, many thanks for your reply I am based in Birmingham so not sure if anyone is in my area? Thank you for the information I will have a read of it.


  • Sam, Where abouts are you in Birmingham ? I live about 30 mins from the city-I don't know anybody in the area who has APS-feel isolated !! I have seen somebody on this site who lives in Stratford upon avon area though which is about half an hour away from me.


  • I live not far from Solihull, Shirley is that anywhere near you?

  • 15 mins away ! I have a few relatives in Shirley and I shop in Solihull. Five minutes from Knowle near Solihull.

  • Wow isnt it a small world!!! Do you mind me asking what is your situation, I know you mention you had APS but do you have Lupus? Have you had a PE etc? How do you cope day to day, sorry for all the questions but would love to understand from fellow people a bit more as I have not long been diagnosed so still learning lots, thanks for your help Julie-Anne

  • Hi Sammy, Diagnosed in 2008 after being diagnosed incorrectly with ME Chronic fatigue, Depression etc. Came as a complete shock. Just happened to lose my eyesight for ten minutes whilst working - got it checked out then immediately sent to hospital in solihull for blood tests and MRI scan. This is when my world turned upside down !! Diagnosed with APS. Given no information on it and left to find out more info myself which is what i did and ended up being referred to St Thomas hospital in london to see Prof Hughes. Thank god i did !! Apparently I have had 10 TIA's now. First put on Aspirin by Solihull , not enough-then still had the painful headaches etc so put on Warfarin by London Hospital-Checked INR regularly but had a further 3 TIA's so put on Heparin. I do not have any other condition as far as i know but have to see consultant in london in a couple of weeks time. I have different symptoms now which I am concerned about and have nobody to ask as my GP does not know about APS. Hence, why I travel to London to get support and information and care. Very expensive for me but I have no choice if i want to be looked after. My legs are quite stiff, my heels are hot sore and feel like I am walking on broken glass. I still have the headaches.

  • Sammy this is the continuation of my reply !!! I am still confused about the disease and what it will be like in the future. I have not worked for 3 years which I cannot get used to. I do feel isolated probably because the lack of awareness especially around where i am. I have very little energy some days are better than others. I feel low sometimes but try and snap out of it. My diet is awful and I have a weight problem now. Been advised to lose weight by consultant. I used to go the gym, swim walk ride very energetic but get tired easily. Can't sleep properly and my bowels are not efficient!!! Sorry ! But overall I am getting used to the problems and the difficulties I have to face with APS but I am still here !!!! So, when I go to London I will probably have more tests because of the symptoms that I am experiencing now. How about you-tell me some of your story ??

  • Hi Sam,

    I dont know if its to far for you but i live in leicestershire area and meet up with suzy who lives in staffordshire. I'm sure there are others closer to you.

    Take care, gentle hugs jessielou x x xxxxx :-) :-) :-)

  • Hi Jessielou,

    Perhaps Sam and I can meet up and then arrange to meet you in Leics or Staffs soon ???? If Sam lives by the city of Birmingham, I am about 30 mins away so not too far !


  • Hi Julie

    think thats a great idea hon, would be lovely meet up.

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

  • Hi Jessielou

    I have finally found someone who is not too far away from where I live !! Sam lives approx 20 mins away !! Hope we can meet up and perhaps meet you in Staffs or Leics xxxxx

  • Yes Im happy to meet up x

  • Hi Sammy

    Well, if you like I will either give you my mobile number or we can arrange to meet in Solihull or somewhere ? I don't mind I will leave it to you. I am not here from Thursday 15th but will back on the 24th Sept. So just leave me a message on here where and when you would like to meet up !

    Take care

  • Hi maybe meeting for a coffee in solihull sometime would be a good start. I have been referred to a specialist at the QE Hospital who I am seeing end of September, I have Lupus, as well as APS and Raynauds and I also have a pacemaker so am a little "special" as the consultants keep telling me haha!! I am off sick at the moment but that was due to haing a PE 8 weeks ago, but I am hoping to go back to work shortly, I am lucky to have such a supportive firm who I work for, I have been with them for 16 years. I try to stay positive and upbeat always have really, although sometimes it harder to do in practice. I suppose I joined this site to try and understand a bit more about it and to meet people like myself.

    Best wishes Sam.

  • Hi Sam,

    Just give me a date and time and if we both feel ok I would love to meet up and have a coffee-tonight I feel not good and have chest pains for the first time ever which I am concerned about so i think I am going to bed now otherwise I will be on here forever !!! Take care and i look forward to meeting up !!!

  • Hi Julie-Anne, sorry for the delay in coming back to you I went back to work yesterday, only for a couple of hours but am determined to get back to things as fed up of being at home!!

    Im going to see how I get on with work etc if thats ok and then once I am settled in it would be nice to meet up, hope thats ok, dont want to start pushing myself too much if you know what I mean.

    I hope the chest pain is ok, I sure know what that feels as I have a pacemaker for another condition so have had chest pains for many many years, take care Sam

  • Well done !! Hope you enjoyed it - Yes I will leave it with you-no problem- Take it easy and just tell me when you are ready to meet up. x

  • Thank you, its early days but its good to get back. I only work 4 days a week so dont work on a Friday so maybe that would be an option for meeting up in solihull if you fancy it? Hope your chest pain is getting better x

  • i live in shropshire!

  • Hi Emma- You too are not far away so when we arrange to meet up I am sure we can let you know too and hopefully meet in a convenient place for all three of us !!

  • this is good news you guys can meet up

  • Hi Julie

    I`m so pleased you and sam are near to each other. Has helped me immensely being able to meet up with Sue, is weird how alike our illnesses are. She`s a really nice person and glad to have met her, wish we didn`t have to have this crappy disease to have met though.

    Would be nice to all get together.

    Take care, gentle hugs, Jessielou (Sheena) xxxxx :-) :-) :-)

  • Jessielou,

    Yes we must all try and meet up someday perhaps before Xmas !!!

    It will make us feel more comfortable with our condition-I hope

  • A very big welcome all this information sharing and networking is great for us all! M

  • Great to read your story i'm sure you will get the info you need here and some more good friends. Nice to meet you xxxx

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