My AS story

1. Cheeba 17 May 2010 at 14:48PM
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   Hello!!

   I have AS too, and although I was diagnosed at the age of 17, it has progressed within the last 6 years. ( I am 30 years old, female). It started in my hips, knees and back. Over the past 6 years it has started in my neck ( mad pain!) and my shoulders/chest. Most of my treatment has been through the NHS (in the UK). Sometimes the \"pain management\" feels like a full time job in itself. Hydrotherapy is fantastic, but I currently do not have access to it - there is only 1 place in all of Greater Manchester that offers it ( on the NHS) and it is not accessable via public transport. ( and is only open 9am-4pm during my working hours!!)

   I religiously carry out an easy home physiotherapy routine each day that takes about an hour. I find that these exercises are my saving grace. ( So do your stretches, people! they are free, effective, and you don't need to go anywhere to do them!)

   At present, I am taking diclofenac ( NSAID), methotrexate, Paramol for the pain as and when needed. I am about to start on Humira this week. I also find that smoking weed helps both the pain and the nausea caused by all the pain medication. (especially Methotrexate!)

   I generally live an active lifestyle still and find that if I am stiff, the WORST thing i can do is rest and be immobile. It just makes it all worse.

   I'll give the Humira a go and see how i get on with that one in addition to the others.

   All the best to all AS sufferers - its not an easy one for other people to understand! One day you can run, the next day you cant even sit up or lay down or stand, or sleep... then the day after that, you can be doing cartwheels again.

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2. Kenny 21 May 2010 at 14:47PM

   Hi Cheeba,

   Yes same boat here but I am amazed that you have access to Humira so easily. I was diagnosed on a few years ago but NHS knew that something was seriously wrong for about 6 years before final diagnosis.

   I am very active, I climb mountains most weekends, I run 3-6 miles 3 times a week again this is around my daily routine of stretching.

   Your probably thinking \"This guy doesnt have it bad then!\" trust me, I do.

   There are days when I cant move but I have to step my pain killers up and crack on, you have to keep moving.

   I use Arcoxia (anti inflam, NSAID) which help as they are not that tough on the stomach as Ibuprofen. Painkiller wise I have Tramdol which help alot when I am feeling it.

   Exercise definitely helps and I train with people, atheletes who done have any conditions, I find this helps. I dont mention it but they know when I cant do it, I just cant risk making a flare up worse.

   If you want to chat or just be intouch for advice email me ******

   Cheers

   Ken

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3. Minihaha 15 June 2012 at 13:25PM

   Hi everyone

   Like you two I am an active person but sometimes the AS just floors me. I find it very difficult work wise as, like you say, there is no saying when it'll flair up.

   Over the years I've had to phone in sick now and again, mosly when I was reduced to an agonising shuffle, but I know my colleagues find it difficult to believe me. One of my directors actually said "but don't the specialists have a spreadsheet of when it's likely to flair up". I was slightly speechless. Some days it's not the pain just an overwhelming tiredness. I can't blame my work for not understanding but it does make me feel very guilty - especially when the pain goes so quickly sometimes even I feel I've imagined it!

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