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Interstitial cystitis and Axial Spond

Hi,

I’m in a really bad flare up (spine, ribs, hips, shoulders, wrists and feet), and I have now got interstitial cystitis which adds to my problems at night! Does anyone else suffer from this in flare ups and what helps??

Also I find I get cardiac arrhythmia in bad flares up at night.. who else sufffers from this.

I swim and do yoga everyday. But I’m struggling with the lack of sleep for the past 2 months with this uncontrollable flare up. And it makes working full time and having a young family very difficult…

Any advise.. I’m scared how quickly the disease is progressing despite biologicals.

  1. I understand where you are coming from. I posted on another discussion about IC and have a couple examples. I do my best to try with sleep and I do a number of things to supposedly help, but I am not always able to sleep well. I am so sorry you are having to deal with these issues and cope while you have a young family and work. Sending prayers.

    1. Hi - I'm truly sorry to hear about the intensity of your current flare-up and the added challenge of interstitial cystitis and arrhythmia at night. It can be quite challenging to manage multiple symptoms simultaneously. I, myself, do not and never have had interstitial cystitis or arrhythmia. I can't imagine the burden this puts on your healing and/or treatment plan for SpA. I thought I stop by and send you a link I found from The Spondylitis Association of America - https://spondylitis.org/about-spondylitis/possible-complications/the-heart-in-spondyloarthritis/ It may have some answers you are looking for. Have you discussed the arrhythmia with your treating physician? Maybe that's the next step in managing it. Also, here is a link to an article by one of your contributors on this site with regard to interstitial cystitis - https://axialspondyloarthritis.net/living/interstitial-cystitis It may have some answers you are looking for. As for responses, I hope others chime in and offer up their experiences. I will return to observe any replies. Thoughtfully - Rebecca (community moderator)

      1. Hi


        I feel you on this one. Reading everything you are going through and the symptoms, I can relate. I get episodes of not being able to sleep at night because of the severe pains you mentioned in the same places. I actually wrote about it in these articles, I thought I would share with you. Maybe it will help a bit. I know it's not easy, especially when you have to young children and need the energy to be there for them.


        Sending you hugs the warmest ones,


        Nicky (Team Member)


        1. https://axialspondyloarthritis.net/living/the-sleepless-nights-continue


        2. https://axialspondyloarthritis.net/living/sleepless-nights

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