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Patients Ankylosing spondylitis

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Ryanaddis83

08/06/2019 at 16:05

Ryanaddis83

Last activity on 26/08/2019 at 20:50

Joined in 2019

3 comments posted | 3 in the Ankylosing spondylitis Forum

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Hi I have been having symptoms for years and didn't really know, mainly in the last 12 months been having As flares, I have had 8 so far this year, these last a few days to a few weeks. Last one was for 5 weeks. But I have days when I wouldn't say I have any symptoms, is this normal for others? Is this normal at the start? During a flare I am in agony say 10 out of 10, can't stand straight after sitting and walk with a limp. When not having a flare, it's generally a dull ache from my pelvis, hips and outer thigh, 3 or 4 out of 10. But some days I have no noticeable pain or maybe a very very light pain may be 1 on a pain scale. What's others experience am I just lucky or is this normal at the start? And the days without pain may become less common?

All and any experience will be great

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JosephineO

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21/06/2019 at 12:40

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JosephineO

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Last activity on 15/07/2024 at 09:21

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989 comments posted | 32 in the Ankylosing spondylitis Forum

6 of their responses were helpful to members

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@Ryanaddis83 Hello Ryan,

Thank you for posting :) We also have a forum dedicated to living with chronic pain where you can find articles and discussions about dealing with pain on a daily basis, you might find this of interest concerning what you have just described. You can access the forum by clicking HERE.

How do other members handle their flareups? Do you suffer a similar pattern to Ryan? Please share :)

@GloriaG‍ @Hamiltìon‍ @Scouserdog‍ @Flower123‍ @JackieA‍ @tazzab‍ @Kellcorsa‍ @LucieH‍ @hung.7‍ @JasonWhyte‍ @Windows1987‍ @Jennymh‍ @ahighplace‍ @Walgreens‍ @Mazzar‍ @Marmitesmum‍ @BatoutofHell‍ @Mandy43‍ @Moocher‍ @interested‍ @jkardine‍ @MPWOLRAC‍ @geronimo‍ @davidfoy‍ @Peterem‍ @JackyQ‍ @tcmmcm‍ @Juliewulie1957‍

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Josephine, Community Manager

Newly diagnosed https://www.carenity.co.uk/forum/ankylosing-spondylitis/living-with-ankylosing-spondylitis/newly-diagnosed-2850 2019-06-21 12:40:47

Hello78

26/06/2019 at 16:56

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Hello78

Last activity on 26/06/2020 at 13:00

Joined in 2014

14 comments posted | 1 in the Ankylosing spondylitis Forum

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@Ryanaddis83 The good and bad days are very random to be honest, I have yet to be able to track them. I have decided to start monitoring them in a notebook to see the triggers.

Newly diagnosed https://www.carenity.co.uk/forum/ankylosing-spondylitis/living-with-ankylosing-spondylitis/newly-diagnosed-2850 2019-06-26 16:56:24

Juliewulie1957

27/06/2019 at 10:46

Juliewulie1957

Last activity on 12/08/2024 at 23:28

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5 comments posted | 2 in the Ankylosing spondylitis Forum

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Hi , I was first diagnosed beginning of this year . I also have rheumatoid arthritis. My pain was very much the same as yours . My specialist has tried me on humira injections and I have improved a great deal . The pain is nowhere as severe . I also have buponorpheine pain patches. The only difference to you was I had relief when I sat down and was in severe pain if I stood for too long I felt I had to bend over to relieve the pain . Hope you get yourself sorted

Julie x

Newly diagnosed https://www.carenity.co.uk/forum/ankylosing-spondylitis/living-with-ankylosing-spondylitis/newly-diagnosed-2850 2019-06-27 10:46:15

Winnie1000

27/06/2019 at 11:16

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Winnie1000

Last activity on 15/04/2023 at 10:25

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19 comments posted | 2 in the Ankylosing spondylitis Forum

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@Ryanaddis83‍ Hi Ryan,

Your pattern of symptoms sounds similar to mine. My first memory of them from 10 years old, finally diagnosed at around 50, now 58. I've learnt over the years to go with the ebb and flow of pain and ride out the acute episodes. If I'd been diagnosed earlier I would have taken up Pilates, dance, yoga a lot sooner.

Newly diagnosed https://www.carenity.co.uk/forum/ankylosing-spondylitis/living-with-ankylosing-spondylitis/newly-diagnosed-2850 2019-06-27 11:16:12

cooperman

28/06/2019 at 10:38

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cooperman

Last activity on 20/08/2024 at 18:31

Joined in 2015

23 comments posted | 7 in the Ankylosing spondylitis Forum

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I too have suffered from an early age and am now 75 years old. I had a good physio in the early days who encouraged as much exercise as possible and I feel sure this has stood me in good stead. If your muscles are weak the flesh tends to hang off the frame and pain is worse. Whereas if the muscles are strong they support the body much better and in my view lessen the pain. Recent X-rays show that my spine is fused and my neck, yet I can still do most everyday functions and a lot more than many people. On recent visit to the Physio, after initial assessment, she said "your a lot worse than you look"! I think it was a compliment!. So my advice to anyone is get as much exercise as you can. Swimming. walking, Cycling and take out a Gym membership. You will feel better about yourself because the prognosis for anyone not prepared to do this is not good.

Newly diagnosed https://www.carenity.co.uk/forum/ankylosing-spondylitis/living-with-ankylosing-spondylitis/newly-diagnosed-2850 2019-06-28 10:38:05

JosephineO

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28/06/2019 at 14:05

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JosephineO

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Last activity on 15/07/2024 at 09:21

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989 comments posted | 32 in the Ankylosing spondylitis Forum

6 of their responses were helpful to members

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@cooperman @Winnie1000 @Juliewulie1957 @Hello78 @Ryanaddis83 Thank you all for sharing your different stories and experiences, Carneity is exactly for this :)

You can also read our selection of testimonials of other members who have AS, you can access them by clicking here. They are very interesting and informative :)

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Josephine, Community Manager

Newly diagnosed https://www.carenity.co.uk/forum/ankylosing-spondylitis/living-with-ankylosing-spondylitis/newly-diagnosed-2850 2019-06-28 14:05:44

Winnie1000

29/06/2019 at 10:42

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Winnie1000

Last activity on 15/04/2023 at 10:25

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19 comments posted | 2 in the Ankylosing spondylitis Forum

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Oh and keep a check on your eyes. It was because I had uveitus that my AS was discovered. Any feeling of grittiness, or light sensitivity, redness, black floaters (might just be one of those clues) and go straight to an eye hospital and tell them you have AS and suspect you have Uveitis. Don't delay - I did (felt silly as it was misdiagnosed as conjuntivitis for 2 weeks) and ended up almost loosing sight in one eye when an earlier diagnosis would've got me on the mend with a course of steriod eye drops instead of an eye injection (which wasn't as bad as the thought, but still). Be vigilant. Not all with AS will get uveitis but some do so thought I'd highlight the possibilities.

Newly diagnosed https://www.carenity.co.uk/forum/ankylosing-spondylitis/living-with-ankylosing-spondylitis/newly-diagnosed-2850 2019-06-29 10:42:34

Ryanaddis83

29/06/2019 at 10:45

Ryanaddis83

Last activity on 26/08/2019 at 20:50

Joined in 2019

3 comments posted | 3 in the Ankylosing spondylitis Forum

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Thank you to everyone for the replies, I have an MRI at the end of July and see my consultant at the end of August, Naproxen is helping with the pain and mostly just a dull ache now, but still a long road to find out how advanced it is.

Newly diagnosed https://www.carenity.co.uk/forum/ankylosing-spondylitis/living-with-ankylosing-spondylitis/newly-diagnosed-2850 2019-06-29 10:45:22

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