In the process of diagnosis

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Hi everyone I am new here... I am 40 years old and my pain started at 25. I actually did a pretty good job at fracturing my spine at 19. They put my pain down to wear and tear and consequences of the fractures until recently. I will explain that the fractures were only stable fractures without any consequences at the time. 

My symptoms are as follows, I have pain from my lumbar spine down to my coccyx. stiffness (hard to bend back and sides) Pain in my right groin and hips, and pain shoots to the knees. Stiff fingers and right knee but no pain (maybe due to NSAIDs?) My pain starts at 3am and goes off half an hour after taking my medication so about an hour after I get up. I am in a wheelchair 90% of the time and this causes its own problem. I get pain if I sit in my chair to long so switch it around a bit. I have to swap position, tilt my chair and move around and that staves off the pain. I swim without problem no pain. I have had several bouts of Chostrocondritis, and inflammation in my eye. I also have a random stubborn sore in my mouth (maybe not connected).

Medications I take are Etoricoxib but this is new and was started instead of Naproxen to help with the night pain. It doesn't work on my night pain, but can sit longer in the day time. Robaxin (a muscle relaxant) and Gabepentin.

I have had X-rays, bloods and am waiting on a specialist MRI. I go back in three months.

Now it has been 15 years so you would think 3 months would be a piece of cake, but I had high hopes that the pain meds would work and I would get some sleep. I am exhausted.

So what I want to ask is, does this sound typical of inflammatory pain? Or do my symptoms suggest osteoarthritis.

What are your thoughts. From what I read it sounds more inflammatory and I am just wanting other peoples opinions. 

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  • Posted

    I am in the process of diagnosis too so I don't know that much about it but the eye inflammation and costochondritis is all inflammatory and is connected to AS. I have had mouth sores too in the past.

    From what I've read the other things you mentioned are signs of AS too like the night waking from pain etc

    Sorry your suffering for so long without any answers. It's 3 years for me since symptoms started. I can't imagine 15years of this

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    • Posted

      Thank you for your reply Backtome.

      I definitely think I have inflammatory arthritis from my night waking it was my belief too that is a sign of AS which lead me to thinking that.

      I am sorry you are suffering too sad I hope you get answers.

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    • Posted

      Check out I just found the website and there is a huge amount of info on the low starch diet and success stories even for people who have been suffering with this for decades. It gives me hope that I will get better and be the best mom I can be to my two beautiful children. ?

      My health started to decline shortly after I became pregnant with my first and it breaks my heart that all their time on this earth so far I have been sick. But I'm hopeful that I will get better and I'm willing to try anything

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  • Posted

    I'm so sorry you're going through this.

    I haven't been in a wheelchair, but I know how horrible and debilitating the pain can get.

    I am not a doctor, so everything I can tell you is either from my personal experience or the things I have read. 

    AS is difficult to diagnose. Doctors go for other, to them, more obvious explanations and tend to simplify things even though you can have more than one conditions at the same time. 

    I don't have the gene, my joints haven't fused and IRM is clear, bit I have the symptoms (strong sacro-illiac pain, my left wrist is swelling, mu left ankle is also under attack, I sometimes have pain in my rib-cage, I have eye problems and when I had an episode I had horrible spasms in my back...)

    I stopped all NSAIDs over a month ago, because they are bad for my gut. I'm not telling you to do the same, but I have chosen to change my diet (no starches!) and avoid anything that damages the gut in hope to reduce the inflammation.

    I'm seeing an internal medicine specialist today and hopefully will get some more information. 

    Don't give up. try different approaches, something might work for you.

    Good luck!


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    • Posted

      Thank you for your reply Masha

      I am definitely looking into an anti-inflammatory diet once the MRI has been completed. I am not keen on doing so before as I want the inflammation to show up.

      NSAID's are the only thing that give me any relief, but it doesn't help through the night and doesn't help with my groin pain so other options are definitely worth looking at. Although I just about manage on them, I would be in distress without them.

      Thank you for the information I will look more into this.

      I hope your appointment went okay?

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