I have just been told I have AS at the age of 43. I can'...

I am female, diagnosed with AS at the age of 23, after suffering symptoms for 6 years. Initially the problems were in mt lower spine, pelvis and legs, but increasingly as these flare ups subside, I am having cyclical pain and discomfort in my upper spine and neck.I presently take diclofenac,which relieves pain somewhat, but gives stomach problems. The neck problems result in dreadful headaches, lasting several hours (up to 24). I would be interested in hearing from any other 'neck' sufferers, especially female.

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My main problem is my rib cage below my shoulder blades and lower back. I have had two back surgeries and wonder if this is possibly related to my suffering from AS. I am 31 in great athletic shape but cannot shake this pain. I take naproxen but it seems like things are no better. If you have any suggestions please feel free to email me.:D:lol:

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Hi - I am replying to the lady who suffers from AS in the neck (yes I have had all the pain in the neck jokes !) I too was about 23 when first diagnosed (I'm now 56) It started soon after I had a baby (in fact at the time I was advised not to have further children.) I have been taking naproxen now for many many years and they seem to suit me, and I am pleased to say that about 4 years ago I managed to cut down from two a day to just one in the morning. My neck is very stiff with restricted movement but it has never stopped me from doing anything (including daily horse riding), and I suppose I have just got used to it and I don't let it bother me. My advice would be to keep exercising - gently turn your neck from side to side and up and down, as I feel I would have had more movement if I had done this earlier. One good thing is that over the years it has never got worse, in fact I would say I feel better now than I did when I was 30. I too get head aches which can last a long time, I have even had them for months after knocking my head (great when it stops!) Also watch out for blurred vision (this is soon rectified with drops from the hospital) but you need to act quickly. If you look at the NASS website there may be a class near you where a Physio will show you the best exercises to do

and they are a great place to meet other people with similar problems.

If I can be of any help please let me know. The main thing is try not to let it stop you from doing what you want. All the best, and good luck - Lynne

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about 3 years ago i got a severe pain in my hip it was so bad i could not walk for a fortnight test after test mri scan blood tests...then the doctor said you have a,s i am now 36 i go to the gym 2 times a week to keep fit as this condition made me feel like an old man i hate it the doctor told me if i get pain just to take ibrufen it works for me but i don,t like taking drugs so i do without i very rarely get any problems with pain just a wee niggle now and again in my hips but nothing to moan about but i do get inflamation in other body part like my feet/ankle or even fingers but very rarely doe,s that happen and its, not like its sore but a strange sensation just of presure its all strange to me because how can a,s be linked to my other body parts as my doctor said it,s all related..mmm my advice to people is don,t let it get you down do some exercise as it works for me.

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I had two investigative ankle operations by Orthpedic Doctors/Surgeons who didn't diagnose my AS, only a passing comment to another Doctor by a relative of mine meant that I got to see a Rheumatologist who diagnosed my AS. I've had both ankles affected, my right knee, and also uveititis a few times in one eye. The best exercise I've found for me is cycling and swimming, anything with repetitive impacts such as running or squash seems to cause flare ups in my case. Most of my exercise is cycling and in summer I can happily ride 50 miles with no ill effects. Prompt treatment in my case usually means prompt recovery, especially for uveititis, drops are far nicer for that particular issue than injections!

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I have had AS for thirteen years (since I was eleven), and I was misdiagnosed for many of those years - first, I was told I had Osgood-Schlatter's disease, a very common affliction in the knees of growing children. After an exploratory arthroscopy six years after the primary diagnosis, I was referred to a rheumatologist. Once again, I was misdiagnosed, this time with rheumatoid arthritis. (This is a common problem, actually, as the two diseases are similar in many ways.) Finally, after having lived with the same symptoms and pain for eight years, my rheumatologist hit on AS.

I have a feeling that the reason it took so long to diagnose the AS correctly is that it is not typically considered a childrens' disease. When it does start in childhood, it attacks major joints in appendages, not the spine like it does in adult onset. Had we known about this back when I was a kid, there may have been more we could have done to prevent the lack of mobility I now have in my right knee. Just something to keep in mind if your child starts having knee problems beyond the norm...

I was started on a low dose of methotrexate at first, but the AS continued to spread to many of my joints. Now I'm on Enbrel in addition to the MTX, and it seems to have slowed the progress down, though it hasn't halted it. If you're okay with giving yourself an injection, the Enbrel is good stuff :ok: It's been shown to reduce the risk of organ AS involvment, too, so it's worth looking into if other things haven't worked. (It is expensive though, if you don't have a decent insurance plan.)

Hope you all are doing well and feeling better. Take care.

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