Getting used to APS

Went into St Thomas' hospital in July because I was very breathless. They discovered several large clots in my lungs. After several months of tests I have now been diagnosed with APS and am taking Rivaroxaban indefinitely. Earlier in the year I was diagnosed with Fibromyalgia.

This has changed my life and although I am retired I was a very active person. Now I never know how I am going to feel from one hour to the next - fatigue being the worst, I suppose. I sleep, sometimes, 14 hours. Other symptoms are daily headaches, foggy brain, giddiness, pain anywhere and everywhere and generally feeling ill. When I feel well I maximize the time by 'doing' things but have to pay for it later.

I am under excellent specialists in Guys and St Thomas' but feel very alone in all this. Would love to hear from anyone with similar condition.

12 Replies

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  • Hello, welcome, you have landed in the right place, lots or people of all ages and from lots of different places across the Uk and beyond, in a similar position to yourself. Please feel free to use this forum as much as you would like to. I also suggest having a good look through the charity website. I always also suggest to people going through diagnosis and at regular appointments to keep an eye on their levels of Vitamin D, B12 and Iron, plus their Thyroid, as any of these being out of range can make you feel even worse. I am glad too to hear you have such excellent care, that is half the battle. MaryF

  • I have the same symptoms as you. I also feel it gets worse when I catch an infection. I have a little girl by myself and a business to run, I take it 1 day at the time cos as you say, we never know how we feel. Just keep your head up.. Good luck to you from Denmark 😊

  • Hi again,

    Was it possible to find a Specialist in Kopenhagen as APsnoFab and Mary here suggested you should try to?

    Are you still without any anticoagulation? Your Doctor said she should call the hostital. Did you get a good answer why you are not on bloodthinner?

    Best wishes to you from Kerstin in Stockholm

  • Hi Kerstin

    I'm still not getting any blood thinner. My doctor has contacted the hospital and waiting for reply. I was told Monday that they wanted the hospital to give me a plan of action but otherwise they would do it to. So I'm meant to get blood thinner and I'm pretty sure I would be much better with it now! At the minute I have a cold and I'm coughing so bad so was in to see my doc just to be sure it wasn't a pneumonia again.. Only about a month since I had this... Not easy when you got a young kid dragging all the bad stuff home 😒 My mood is great as always and taking 1 day at the time. Thank you for remembering me and my questions 😉 I will write when I get news.

  • Hi, I think your are great! Please continue with the doctors.

    Did you try Baby-Aspirin? I do not remember, but that is not anticoagulation but it helped me a while and it is better than nothing.

    Hope you will get better soon and please tell us when you have some news!

    Kerstin

  • Yes I feel same way! I fro New York, but My Mom fro Denmark! I love Denmark and Danish people! Feel good!

  • Hi and welcome to this friendly site,

    I also have Pulmonary Hypertension but I am not breathless. They always ask if I am breathless but I am not. I was diagnosed in 2002 and have all the antibodies there is in high titres and after I started anticoagulation with Warfarin in 2011 most of the neurological symptoms you describe some of, disappeared.

    First of all you must have a Specialist of APS, which you obviously have. I wonder if you symptoms of foggy brain, giddiness and headaches improved after you were anticoagulated with Rivaroxaban? I guess they have done Echocardiographies also.

    Best wishes from Kerstin in Stockholm

  • Hi Kerstin

    Thank you for your reply!

    As I have only recently been diagnosed with APS I am having to think on my feet, and feel I must do anything positive to improve my quality of my life. I have had an Echo test which was clear and am now due to have a VQ Spect.

    This time of year has never been good for me so yesterday we got a SAD lamp which I have now started using (when I wake in the morning) with great hope! I will keep you posted.

    Do you have short term memory loss? I'm good at making notes, reminders etc. but I know my memory is getting worse. It almost sounds like I have Altzheimers but I'm sure it's not that.

    Anyway, onwards and upwards.

    Carol from Kent

  • Hi Carol,

    Yes I have short time memory loss but it is not Alzheimer. I write everything down. It is a sort of damage after my many miniclots and microembolies, but nowadays I never doubt if my parents are dead (they are) and what occupations my two grownup childen have. That only happened before I had started Warfarin. Still I sometimes have difficulties to find my way and I forget places and what I did last Midsummer and where I was. It is not so bad. I do crosswords and I write on this site not to forget my English from school. I am not very young but only 71.

    Read "Sticky Blood Explained" by Kay Thackray. She has got APS and writes about the different symptoms and how it is to live with this rare illness called APS.

    Kerstin

  • Hi,

    I felt exactly the same and luckily I found this forum - it's a great way to not feel so alone with this.

    I agree with all of the amazing advice above, take it one step and day at a time and if you're not having a good day or week- don't despair! If there is one thing I've learnt is that thankfully, it's manageable and you'll come good again when levels are nice and steady.

    Make sure your friends and family are aware of this, not for pitty but for understanding when you're too tired to visit and need to vent about that symtom that is taking over at the time.

    I hope you get as much support from just reading (and sometimes venting) on this forum.

    Best of luck!

  • Thank you for your story. You helped me understand my sister who was just diagnosed. She's very strong but has has had many tragedies in her life. This has really set her back

  • Hi I'm sorry u feel so unwell! I'm newly diagnosed! I to was diagnosed with Fibromyalgia about 15 years ago, but wonde if it Fibromyalgia at all? I just think it's APS! Many people with APS seem to have fibromyalgia! Also as common with others, been DX'd with MS too! Strange! I have thee symptoms too! Are u on any blood thinners?

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