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Living with ankylosing spondylitis

Let's discuss ankylosing spondylitis!

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avatar Benjam23

Benjam23

10/12/2018 at 14:23

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avatar Benjam23

Benjam23

Last activity on 09/07/2020 at 10:24

Joined in 2014


11 comments posted | 4 in the Living with ankylosing spondylitis group


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Hi,

I thought we could gather here to discuss ankylosing spondylitis. Before writing, I went around the site, I read a lot of testimonies and I admit that it feels good to realise that I am not alone. I noticed that many of us were already on different, more focused topics, but I would like to open a more general discussion so that we can get along.It would be nice to discuss this disease with others... I don't know anyone else with it...

 I hope to hear from you soon

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avatar Paulphi

Paulphi

04/02/2019 at 23:37

avatar Paulphi

Paulphi

Last activity on 06/05/2019 at 18:58

Joined in 2019


3 comments posted | 3 in the Living with ankylosing spondylitis group


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Hi, I have ankylosing spondylitis and lately I've been getting light headed is this normal with ankylosing spondylitis ??? Never had this sympton before. Do I need to see the doctor 


Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653 2019-02-04 23:37:44

avatar Scouserdog

Scouserdog

12/03/2019 at 03:30

avatar Scouserdog

Scouserdog

Last activity on 21/04/2025 at 07:43

Joined in 2018


15 comments posted | 12 in the Living with ankylosing spondylitis group


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@Benjam23 I did not get diagnosed with AS until I was 60, despite several doctors saying Ït really looks like AS but cannot be because you re negative for HLAB27 änd you are a woman.    I am now on Remicade after Enbrel and Humira did not work.   What I am really struggling with is that I want my old life back.   I miss gardening, cooking, wandering around markets and super markets, walking the dogs around the lake, going out for dinner, travelling, taking the dogs to sheepdog school, teaching migrants English, and sitting on several boards and committees.   I have not found anything to fill that big empty hole.   I can still drive but getting in and out of the czar is excruciatingly painful.   This is not at all how I expected to spend my retirement and I am really struggling with it.   Ii am open to suggestions including suggestions for cars which would be easier to get in and out of, bearing in mind that there is only me.

 


Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653 2019-03-12 03:30:50

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avatar GloriaG

GloriaG

02/02/2023 at 03:12

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avatar GloriaG

GloriaG

Last activity on 28/02/2023 at 00:50

Joined in 2018


107 comments posted | 47 in the Living with ankylosing spondylitis group

4 of their responses were helpful to members


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@Scouserdog Hello, I too have A.S. and can relate to your comments very well. I was a nurse, running a clinic for the poor for 25 years. That's what I miss the most. Helping the needy and the sick. Now I cannot walk and I feel lost as I cannot do my work and can barely use my computer as my fingers are twisted and painful. I rarely go out as it is far too difficult to get me into and out of my car. I do have a driver and he does help but the pain it causes it too much for me. I'm so sad and lonely. Hugs to you. G


Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653 2023-02-02 03:12:13

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avatar Scouserdog

Scouserdog

12/03/2019 at 03:31

avatar Scouserdog

Scouserdog

Last activity on 21/04/2025 at 07:43

Joined in 2018


15 comments posted | 12 in the Living with ankylosing spondylitis group


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@Paulphi‍ 

I have not come across that so I would speak to a doctor about it. 


Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653 2019-03-12 03:31:37

avatar Benjam23

Benjam23

02/04/2019 at 11:51

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avatar Benjam23

Benjam23

Last activity on 09/07/2020 at 10:24

Joined in 2014


11 comments posted | 4 in the Living with ankylosing spondylitis group


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@Scouserdog Making life adjustments is hard, especially after working all your life to reach retirement to find that you can't even properly enjoy it. 

See the signature

Benjam23


Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653 2019-04-02 11:51:18

avatar Juliewulie1957

Juliewulie1957

04/04/2019 at 11:23

avatar Juliewulie1957

Juliewulie1957

Last activity on 04/05/2025 at 20:59

Joined in 2019


5 comments posted | 2 in the Living with ankylosing spondylitis group


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I have just been diagnosed with peripheral spondylitis. Does anybody else have this ? .. I know it means that it is the lower part of my back that is affected instead of the top . I have just started on the humira injections but it’s too early to see any improvement. I also suffer with rheumatoid arthritis which I have had for twenty years . I have probably had the spondylitis for many years because I have been suffering with stiffness in my lower back and pelvis for a long time . The bottom part of my back feels very rigid and extremely painful . I find it hard getting in and out of my car and bending . I also find the pain radiates into my hips and pelvis . But I’m hoping I will eventually get some relief with the humira 


Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653 2019-04-04 11:23:48

avatar CynthiaC

CynthiaC

21/07/2020 at 15:34

avatar CynthiaC

CynthiaC

Last activity on 19/07/2021 at 16:06

Joined in 2020


4 comments posted | 4 in the Living with ankylosing spondylitis group


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Hi everyone, I hope it's ok to comment here. I'm still adjusting to my new diagnosis. @Juliewulie1957 I don't have peripheral spondylitis, but I can relate to the hip and pelvic pain, I've had sacroilitis for many years which I found out is a precursor to AS. It is so painful. I'm starting to have a lot of difficulty walking.

@Scouserdog I'm missing my old life as well, moving some days is so excruciating, I can't do all the things I used to love like gardening and long walks.


Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653 2020-07-21 15:34:41

avatar GloriaG

GloriaG

22/07/2020 at 12:30

Good advisor

avatar GloriaG

GloriaG

Last activity on 28/02/2023 at 00:50

Joined in 2018


107 comments posted | 47 in the Living with ankylosing spondylitis group

4 of their responses were helpful to members


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@Scouserdog @Scouserdog @Scouserdog  Hiya...I too have A.S. and like you I am struggling right now. I also want my old life back as a nurse in my busy clinic. All I could do during isolation due to Covid19 was organise things on the computer. Cant go to the clinic even after buying a mobility scooter ( named Ferrari ) I have extreme pain right now and horrible rashes all over my body where I perspire. They are painful little blisters, pus filled. I have had Bowel problems too and that's making more more sore. My hands are red and swollen that they make it very difficult to cook, chop vegies etc...sometimes can't use a door handle or pick up a cup. They tell me that it is Carpel Tunnel Syndrome. I have also had fevers, not very high but enough to add to my problems. As I live in Indonesia there is not the health care that I need. Just able to take Tramadol for pain but no other meds available. Have not been out of the house for five months as cannot walk very well and also my car is high off the road and even with a small step it is very difficult to into and causes me a lot of pain later.  Recovering from Typhoid at the moment which is a nasty Salmonella infection and was in hospital for that...I do try to soldier on but lately it is almost unbearable. What can I do...Hugs to you all... G


Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653 2020-07-22 12:30:18

avatar Scouserdog

Scouserdog

22/07/2020 at 14:07

avatar Scouserdog

Scouserdog

Last activity on 21/04/2025 at 07:43

Joined in 2018


15 comments posted | 12 in the Living with ankylosing spondylitis group


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I feel for you - I rarely leave my house.   My car is a standard sedan but difficult to get in and out of - I have been looking for a new one for the last year but without success.


Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653 2020-07-22 14:07:27

avatar GloriaG

GloriaG

27/07/2020 at 18:02

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avatar GloriaG

GloriaG

Last activity on 28/02/2023 at 00:50

Joined in 2018


107 comments posted | 47 in the Living with ankylosing spondylitis group

4 of their responses were helpful to members


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@Paulphi    Hi, this could be a problem in your neck, so ask your doctor for an X Ray or MRI to check if the dizziness is coming from a disc in your neck....Good Luck...G


Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653 2020-07-27 18:02:38

avatar Ankyloo

Ankyloo

18/08/2020 at 17:14

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avatar Ankyloo

Ankyloo

Last activity on 17/03/2022 at 10:26

Joined in 2015


30 comments posted | 22 in the Living with ankylosing spondylitis group


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@GloriaG Wow that all sounds nasty! I do hope you're doing better! I had carpal tunnel once from working too much on my computer and I had weakness and aches in my hands and fingers, but not redness and swelling. That sounds a bit like arthritis. I'm really struggling with fatigue and pain right now, I can barely get anything done at home. It's especially bad since I'm still working from home. 


Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/other-discussions/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653 2020-08-18 17:14:42
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