Type of Pain Comparison for AS?

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Hi. I was unofficially diagnosed with AS by my gp but he sent me to the specialist to get it confirmed and I've been sent home twice now with nothing but "you don't fit the criteria" and "don't let the pain stop you live your life". 

I believe it's because I don't have severe back pain that they are dismissing me. Now I do have the back pain but it's not as bad as the pains in my joints and arms and legs and hands. 

The point of this is I was just wondering if anyone has had similar pains. Like it feels like my arms, legs and hands are broken and need to be put back into place and my whole body just constantly throbs in pain. I also am very tired and I try to exercise but I can't even walk around the shops for an hour without having the pains get worse and feeling extremely tired. The pain in my back is in the lower back and it's when I'm standing for ages that it hurts and in bed and I constantly have to move to get comfortable. 

Just wondering if anyone has experienced the same thing because I have no one else to ask questions to and I'm just sick of being told no by doctors. They didn't even do scans to rule it out they just said because the pain was throughout my whole body and not just my back it wasn't AS. 

Sorry for the long post 

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  • Posted

    Paige don’t give up!!! Bottom line is you have SOMETHING and deserve diagnosis.  I was the same way... initially it was all in my lower back and very painful.  Today, I have many other symptoms too.  I also initially was so incredibly fatigued I slept all day and that wasn’t like me.  I went to five doctors before I finally believed myself I had it.   Do you or family have psoriasis or gastrointestinal issues by chance?
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    • Posted

      Yes thankyou!! 

      I mean I do have the back pain just my other pains throughout my body are worse. Just wanted to know if anyone else had other joint pains worse than the back/hip pains.  I also sleep all the time and I'm very fatigued, after like a walk in exhausted haha.

      Wow 5!! Ive been to 3 so far so fingers crossed haha. Thankyou for your reply and not making me feel like I'm a mental case 😂

      And I'm not entirely sure about those issues but I do know my dad and my grandmother do have some gastrointestinal issues

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  • Posted

    Hi paige38820, I have had AS for many years but was only diagnosed last year.  I have pains everywhere, including my back, feet, fingers, and even intestines when it gets really bad.  I kept complaining and no one could figure out what it was.  An MRI and my blood work finally confirmed everything.

    In my case, it seemed like the only one who could finally tell me what it was, was the rheumatologist.  Ask to be referr d elsewhere if you’re not getting the tests and answers you need!

    Good luck!

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    • Posted

      Same here Yvonne.  My pain is widespread too and I think it’s because inflammation doesn’t just always target one thing...it can make it’s pathway to a lot of organs and joints.
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    • Posted

      Hi, Good to know I'm not crazy and could possibly have AS (not glad just want some kind of closure / answer haha) I have it in my fingers and toes and feet just everywhere really as well haha. 

      I'm going back to my doctor for another referral and I might ask for some kind of mri or x-ray at least just to rule something out. 

      Thanks for the advice!! Must appreciated! 

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  • Posted

    Paige, a rheumatologist can tell you if you have AS or some other inflammatory disease. The test is usually positive for HLAb27 antibody and x-rays will show calcification along the sacral iliac joints of your pelvis.
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    • Posted

      Yeah I went to the rheumatologist, the first time they sent me to physiotherapy and the second time, which was today,  she just said to me she doesn't think I have it even with the pains I have and to quote her "I don't think we'll keep seeing you here, now don't let the pain stop you from living your life" and I proceeded to break down in her office because she made me feel like I was crazy and my pains weren't real haha 

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  • Posted

    Have you been tested for hla b27 yet? And if you don’t mind me asking how old are you? I’m 35, I was diagnosed with AS after being misdiagnosed for a year I just kept pushing to see a better rheumatologist. I’n all honesty I’m a mess, I need 2 hips, my back is always in excruciating pain, my arms /shoulders hurt so bad I can’t do my hair etc pretty much everything you said so I have a hard time believing you don’t have something going on but I was told I had congenital hip dysphasia then osteoarthritis honestly no one knew I just kept pushing telling them I’m exhausted I can’t walk there is something wrong and they finally sent me to a rheum who took the time to check so please let me know about Hla b27 test or not 
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    • Posted

      Yeah I have been tested for the HLA B27 and it was shown that I do have the gene and that's when my GP sent me to the rheumatologist and because I don't have the servere back pain (I do in fact have some back pain just to me it's not as bad as my hands, feet, arms, legs etc.) they sent me to a physiotherapist and he wasn't sure why I was there if I had the positive gene but tried to help anyway. I went back for a follow up and she basically dismissed me and said she didn't think I had it and to not let my pain stop me from living my life 

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    • Posted

      Also I'm 20 going on to 21. But have been feeling pains since I was 19 but was told my other doctors to take pain meds haha 

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  • Posted

    It doesn't sound like AS to me. As someone who has it I've experienced similar pains but my pain started out exclusively in the back/lower back and didn't start to effect the peripheral joints until I got older. I'm 39 now and thankfully I have never had pains invmy hands. What you described sounds more like regular RA not AS

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    • Posted

      My physiotherapist said everyone can experience different pains and symptoms can develop differently in people, especially from men and women he said.

      Also the rheumatologist said she didn't think I had RA either so I'm at a lost really 😂

      Guess I'll just not be able to bend over and put my own shoes and socks on by my 21st birthday because I can barely do it now 😂

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  • Posted

    Wow. If you have that much stiffness in your back then I would have to say that it sounds like AS. I was told that I have an extreme case of it but I wasn't that bad at your age.

    I really hope you can find a good rheumatoligist Paige. If you can find a medication that works for you such as Enbrel or Humira it will change your life. It will stop the progression of the disease and end the inflammation. Then you shouldn't need as much pain meds. Keep me posted on what happens. Good luck with it Paige. I hope you find help

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  • Posted

    I was diagnosed with AS when I was 27 and it was spinal pain and stiffness that were the key symptoms. 20 years later I started having pain in my hips, knees, feet and shoulders. It doesn't sound like yours is the typical progression but you should be able to get some help for the inflammation or at least your doctor should keep trying to diagnose you. Have you checked if you have an allergy or gluten intolerance? I really hope you get a proper diagnosis and it would be wonderful if you didn't have an autoimmune disease. Hang in there.

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