New here - not new to arthritis

Bubble Member Posts: 5
edited 28. Nov 2023, 14:05 in Living with arthritis

Hi I'm Lorraine and I've never been part of these sort of discussions. Probably due to feeling there is nobody that really wants to listen. However here goes. I'm 55 now but have had Ankylosing Spondylitis, Crohn's Disease and Epilepsy since I was 24. It seems that I had Ankylosing Spondylitis for a few years before diagnosis but at the time it was intermittent back pain. However when I got Crohn's Disease everything changed. The inflammation from the Crohn's Disease went everywhere and that was when the Ankylosing Spondylitis (which was diagnosed at the same time as the Crohn's) became constant and never went away. Whilst in hospital I fell on the floor when trying to walk and ended up with Epilepsy. Within 3 weeks I went from being 24 to feeling like I was 90. My whole life changed. I was never referred to a Rheumatologist and spent 25 years not knowing that I should be seeing one. I'd been on the same tablets since day 1 which I found out never worked. Painkillers were useless as well. Hence pain 24/7. I'm now on Anti-TNF injections which has been a rollercoaster of emotions. I'm on my 4th type now but this one is wearing off early. However it's just a relief that I don't have to hold onto my ribs going round a corner on a bus any more. My 5 years of seeing a Rheumatologist has been an eye-opener as I've found out I have fusion in my spine and I have 8 things going on rather than 3, one of which is OA in knees, hips and jaw. Although I'm still in pain from all parts of my body it's the mental side of things I am not dealing with very well. On a waiting list for help in that area. Sorry it's been a bit long-winded but it's the 1st time I've had the opportunity to actually tell the whole story in one go.


  • Al
    Al Member Posts: 169

    Hi,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


  • dreamdaisy
    dreamdaisy Member Posts: 31,520

    Hello, crikey that's a tale and a half, you poor thing. I began my first arthritis back in 1997 (which was finally accurately diagnosed as psoriatic nine years later) and then OA was diagnosed in 2011. I also have fibromyalgia. The first arthritis was not a surprise due to being born with auto-immune inflammatory nonsense but the OA was a total shock.

    I have had a long day amd am tired: I will be back tomorrow when I am feeling a little brighter. DD

    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Lilymary
    Lilymary Member Posts: 1,742

    Hi Lorraine, you have had a rough time, so sorry to hear this. It sounds like your medics weren’t particularly on the ball, but I hope your rheumatologist is on your side and can help set you on a better path. Lovely people on this forum, and some good advice sheets too. Stick with it, this is a good place if you want a moan, as everyone here has been through the mill too.

  • Bubble
    Bubble Member Posts: 5

    Hi Lilymary, thank you for your reply. Unfortunately my gastroenterologist and rheumatologist have been singing from different song sheets. One increased my sulfasazine and then the other stopped it altogether. One put me on an Anti TNF treatment which caused a flare up of Crohns and I ended up in hospital. They did eventually speak to each other and decide between them which Anti TNF to put me on.