Maybe a daft question we get "flare ups" with APS?

Also I find it difficult to identify which symptom is due to which auto immune problem I have.

I have lupus symptoms, APS and Pernicious Anaemia.

Last night I crawled to my bed well before 9PM. This happens every evening. Last night I just thought I can't go on like this much longer. I ache with tiredness.

If it is a "flare" it has been going on since September.


13 Replies

  • Hi Lynn

    I certainly seems to have flares, when I feel totally washed out.

    Dave xx

  • Thanks for replying Dave - the tiredness is dreadful isn't it?


  • Yes it is. D xx

  • Yes we do have flares, stress, tiredness, low inr.....they can all affect Hughes. I have had 4 myself & Tia symptoms too in the last 5 week's, mainly due to severe money worries I have at moment!! These included, chronic fatigue, clumsiness, migraines,eyesight affected migraines, loss of use of right leg for around 20 mins, couldn't see out of left eye(tracing paper over it?) slurring & memory loss. I'm hoping mine gets helped with a higher inr? As money side isn't going to improve for a while!! Hope yours goes soon x

  • I am so sorry you too are going through the mill Suzy - thanks for replying.


  • How are you now? Any improvement? X

  • No not really - finding it difficult to find words so I reckon my INR has dropped due to the B12 - being tested tomorrow. Also been told that when going through the initial loading stage of B12 injections that you can feel worse before you see improvement.

    Have just shown my husband the letter from St T's which seems to list a lot wrong with me - I said, "Blimey if I was a dog I'd be put down and if I were a car I'd be written off"

    Hope you are ok :)


  • Hi Lynn,

    Have they taken you off warfarin now?

    If not can you be in range with the INR-levels?

    Tiredness makes at least me quite "hopeless" . When we do not feel well we also get worried. I do hope you will feel better very soon.

    Kerstin in Stockholm

  • Hello Kerstin :)

    I am still on warfarin for the time being as my local consultant and GP feel happier with me on some anticoagulant. My INR target has been lowered to between 3 and 4. However I have to have an earlier INR check this week as I have been given B12 injections for the last two weeks and so that may have altered the INR - I will find out on Friday.

    I know what you mean about the hopelessness of being tired :)


  • Hallo Lynn,

    Feeling tired is awful for us APS sufferers. It is so important to rest a little while during the day,

    You can understand perhaps why I hope that you can stay on warfarin because for ME it was as I had got my life back when I started warfarin. Even my doctors understand that it is important to keep a stable INR thats is why I have the possibility to selftest here in Sweden.

    For you in England it looks like it is more difficult but try Lynn to give warfarin a chance but then you must try to get it in range. Perhaps your other illnesses makes it more difficult.

    A wish you good luck on Friday

    Kerstin in Stockholm

  • Hard sometimes to communicate with normal people what we mean by the word " tired." I try to use more dramatic language such as " bone deep fatigue and exhaustion. "

  • Yes you are right Gina - also when I say I have a terrible memory - people say "oooh yes I forget things all the time!" meaning they forget something on a shopping list or something fairly small. I forget BIG stuff like holidays we've been on, the route to the shops that I go to every week etc. I do try to explain - or else how will Hughes ever be known about & understood.


  • I've recommended this book many times before on this site, so . . . Forgive me, but here goes--" In the Kingdom of the Sick" is a great read to help you really understand how hard it is to explain yourself to the healthy.

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