Do I accept the inevitable or is it something else?

Hi all
Hope everybody is safe and well in these weird times.

I just wanted to post on here on the off chance that somebody might have had the same and come out the other side.

I'm a 44 year severe Haemophilia A and I'm currently on day 5 of being sat in bed staring at the ceiling because my right foot has gone nuclear. Throughout my life I've had internal bleeds and thankfully somebody invented a factor 8 treatment that sorts the problem and I move on as if nothing has happened, but now I'm starting to get ankle trouble that the magic juice won't fix. To not bring up any historical baggage the latest one did a little click on the outside of my right foot about 2 inches above where I would say my ankle/foot joint is about 7 days ago, nothing really 6 days ago and then full nuclear 5 days ago. As I look down on my ankle I have swelling top left, top right, bottom left (where the Achilles is) and bottom right. It is hot and I can't stand on it at all. If you've ever had a blood test with a student doctor/nurse and they are shoving the needle where it shouldn't go then you'll know what the pain is like in my ankle.

Now the obvious answer would be that it's severe arthritis brought on by years of bleeds in my ankles, but as a rough ratio if I've had 1000 bleeds in my left ankle then I've had 40 in my right - yet this problem manifests itself in both ankles. Sometimes the left, sometimes the right, sometimes both. I've put up with this problem for 21 years now and I just want to make quadruply sure it isn't something else when it's instantly pigeon holed what it should be be because of who I am.

Anybody had similar symptoms but it was something else?? Anybody know a good quick way to get it back to normal - I've been ice packing and resting for 5 days now!!



  • Al
    Al Member Posts: 169

    Hi and welcome,

    It's great to meet you, you have come to the right place for information and conversation with others like you living one or more forms of arthritis

    There are many here more than happy to share their experience as you share yours.

    This link is for general information regarding any type of arthritis

    About arthritis

    Find out more about the different conditions, treatments and how to manage your symptoms.

    if you have a specific question please post in the Living with Arthritis discussion or for general chat in the Chit Chat discussion. Just join in wherever you feel comfortable


  • MoWW
    MoWW Member Posts: 74

    Hi @Laphan That sounds painful, within the online forum we are not medically trained and therefore cannot give advice in this area.

    Given your symptoms I would recommend you speak with your local health professional, explain your symptoms, hopefully they will be able to investigate and advise on the best treatment for you.

    take care


  • Laphan
    Laphan Member Posts: 4

    Hi All

    Many thanks for coming back to me.

    Following on from the above it took 6 days to disappear and allow me to carry on as normal.

    What I don't get is nothing made it calm down (eg RICE) other than when I slept. It's a catch 22 in that you can't sleep because of the uncomfortable nature/pain of it, but when I did get to sleep each sleep made it get that bit better until it was sorted. What is sleep doing that nothing else can??

    How can I walk around and do my day to day stuff now when I was completely incapacitated back then?!?!?



  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    I have an auto-immune arthritis plus osteo. The auto-immune has its own rules, unique to me, wheread the osteo is a simple beast and so predictable. I have no experience of haemophilia and am not a doc but cannot see why repeated bleeds would lead to the destruction of cartilage (OA) or joint inflammation such as that found in an auto-immune (which is measurable in blood tests). When my auto-immune arthritis began in my left knee in 1997 the inflammation never went, it just solidified and was added to with further inflammation so by the time 2002 arrived my knee was 27" in circumference. Pictures of the op to remove it are now in orthopaedic textbooks. It duly returned six months later as the removal did not fix the underlying cause which was eventually diagnosed in 2006 as psoriatic arthritis. The OA resulted from that, both are now widespread but that is what arthritis does in many people.

    What I do know is that having one medical condition does not stop the development of another and it is up to the patient to ensure the docs are not blinkered. I am lucky in that I was born with auto-immune inflammatory junk and developed more so the psoriatic arthritis is no surprise but other unrelated stuff has happened to. It's another thread in life's rich travesties. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • frogmorton
    frogmorton Member Posts: 29,410

    I'm glad things have gone down, but if it comes back you really ought to take some advice. You know your body and you know that that - whatever it was - is not your 'normal bleeds'

    I will be interested to see if this happens again ((()))

  • Laphan
    Laphan Member Posts: 4

    Currently in day 4 of another episode, but this time just above and around the left ankle. Struggling to stand and really struggling to walk, but this time I can at least stumble/trip around the house.

    I can't think of anything that I did on Sunday that started it off, but it's definitely there.

    I do a lot of computer work, probably too much, and wonder if the trigger is not actually on the day but the build up before the day. For example, I probably sat/worked in the same space around 8 - 12 hours a day for 5 days and then walked around the house/garden all day on Sunday. Is it the pre-stuff that is making the Sunday fire things up??