Patients Ankylosing spondylitis
Topic of the discussion
Posted on 10/12/2018 14:23
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
Beginning of the discussion - 04/02/2019Let's discuss ankylosing spondylitis! https://www.carenity.co.uk/forum/ankylosing-spondylitis/living-with-ankylosing-spondylitis/could-we-discuss-this-disease-2653
Posted on 04/02/2019 23:37
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
Posted on 12/03/2019 03:30
@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.
Posted on 12/03/2019 03:31
I have not come across that so I would speak to a doctor about it.
Posted on 02/04/2019 11:51
@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.
Posted on 04/04/2019 11:23
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
Posted on 21/07/2020 15:34
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.
Posted on 22/07/2020 12:30
@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
Posted on 22/07/2020 14:07
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.
Posted on 27/07/2020 18:02
@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