I’ve decided that perhaps I need to provide some more details about how Ankylosing Spondylitis (AS) has affected me and continues to affect me on a daily basis. Here goes…
I was born in 1971, and around about 1991-2 I started to suffer some back pain, mainly in the lower back. It came and went, and my doctor, allegedly a rheumatology specialist, kept telling me to go home and rest. My hatred for that man is immeasurable and he also caused great problems with a friend of mine, he should have been struck off years ago. Anyway… in late 1994 I came back from a holiday in Wales and ended up in bed for a week with food poisoning, but then had to spend another week off work as I could barely move. Things got worse generally and by about 1995 I’d had enough of my ‘expert’ doctor and demanded a second opinion. I saw another doctor and she immediately sent me for a blood test which confirmed HLA-B27 and I ticked plenty of other boxes so AS was confirmed.
I was put on Voltarol for some time which didn’t really help and due to my worries about what it was doing to my stomach I stopped taking them. From then on I self-managed the condition using just Ibuprofen when I needed them. I had similar experiences with Naproxen and Lodine/Losec – basically I needed a quick hit, not a slow release medication.
In late 2002 my right knee became very swollen for no reason and I had to have it drained, I was on crutches for about a month over the festive period but I eventually returned to work. One good thing was that I was finally referred to see a specialist about my AS, and from then on I saw him about once a year if I was lucky (appointments are often shifted back by months with the NHS). I also decided I could not cope with commuting to London each day and now work 3 miles up the road which gives me far more time with my family amongst other benefits.
That’s a very brief run-down, and although it provides basic details, it’s difficult to convey how much it has affected my life for the worse. I do sometimes get periods when my mobility is pretty good, but there’s always something that hurts. Always. And when it gets bad it’s really bad, to the extent where sometimes I’ve had to go back to crutches and have to crawl upstairs on hands and knees. And from what I’ve read online I seem to have it pretty good, perhaps helped fractionally by my low weight and the fact I’ve never smoked and stopped drinking years ago. I try to eat reasonably healthily but I struggle with fresh fruit due to my digestive system not being as robust as it should be. AS also affects my family life – my wife and son have to put up with so much, and I quite often have to change plans at the last minute, but they’re both very understanding and I love them both dearly.
My symptoms include intense pain in my neck, shoulders, hips, lower back, entire back region, feet and heels.
That’s all for now, but I shall edit this page often to keep it up to date. Thanks for reading.
Update, July 09 – see the recent posts for my amazing turnaround using Humira.
I’m sorry that you are suffering with pain on a daily basis. I have a degree of pain/discomfort which is a result of two pregnancies close together and not enough sleep apparently. (Hmm, not so sure about that one myself…)
My Grandfather had AS. Back in those days I dont think there was much treatment for him and he was in a wheel chair from the age of 21 (though he still managed to have 2 children!). I believe they did something which paralysed him so he felt no more pain but was unable to move from the neck down.
Your photos are an inspiration. Thank you for sharing those and your thoughts on this blog.
Felix.
sorry all those have the AS. It is involved with me as well i am also taking the methraxte. it helps me much.
but what dose it do i do not know.
will it remove my AS?
or will it make me good .
or can it live me for ever
i want to stand straight like others
could it be possible to me?
i feel much better after taking seven dose of metrex.
i feel that will completely help me. to come out of the AS
i do understand much of your story. it’s my story as well. the only difference is that i was diagnosed a littler later now my spine is fusing so my mobility is comprimised. i am still able to get around thankfully and my 2 children and husband are great and supportavie. i’m on the methotrexate. 7 mg. sleeping pills pain pills folic and stomach meds. you name it i have it. in 2 months i will be on embrel the injection which is scaring me to death. my doc said not to stess about it but easier said than done. my only hope is that it helps i do try to stay positive because i no their are worse off. only a few people at work no about it but understand that i do have back issues. my heart goes out to all that suffer from AS. my doc said that medicine has come a long way and that managing it is possible. So i have givin him full control of me. One day i just hope to have some normalcy in my life and the idea that i can play with my children without pain is what keeps me focused. thank you for sharing your story’s and letting mine out…
susie.
Thanks Susie. Again, it sounds like I have it easy compared to some and I hope your medication helps you. Thanks for reading and commenting.
Tim.
Hi I too started Humira two months ago after many years of chronic pain, stiffness and generally feeling rubbish. Humira has transformed ny life and I would recommend it to anyone. I was hoping it would sort out my dodgey stomach but I still have that which can also be a nightmare. All those years of anti-inflammatories I should imagine but there’s always immodium. The only problems I have found with Humira is if I cut myself I bleed alot more and I also bruise alot easier. I assume this is normal. Hopefully in the future AS sufferers will be given Humira at an earlier stage before the damage is done. Great blog by the way. you are an inspiration.