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What would you share with someone newly diagnosed with Axial Spondyloarthritis?

Comment your learnings, tips, resources, or (non-medical) advice here to support someone going through a recent diagnosis! 😀

  1. My best piece of advice include:

    1. Studying the disease - knowing it’s symptoms, the umbrella and arms of AXSPA, treatments, etc.

    2. Knowing what inflammation is and how to manage it with drugs & holistic rememdies.

    3. Exercise daily. Do not skip a day. This can be walk, swim, dance, yoga, etc.

    4. Meditate and manage stress. Stress = pain. Learn about stress as inflammatory.

    5. Learn how to self advocate with doctors.

    6. Join community groups.

    7. Don’t believe everything you hear in community groups. One person’s experience with a drug or remission or whatever won’t be your own. Everyone is unique.

    1. I would say you must be your own advocate with medical providers. You know your body and if you see/feel something you are the expert. My diagnosis took years, my symptoms fluctuated, my response to treatment changed and through it all I had to be firm with the folks ordering my care. Retired from my profession as a Physician Assistant due to my illness, you would think they would believe me, but even with my experience I had difficulty getting adequate treatment.

      1. thanks for chiming in and offering up your experience on our site. Advocating is essential when dealing with chronic illness. No one knows your body better than you. It's so frustrating to hear another story of a woman offering their experience in the phys office and not being heard. The struggle is far beyond what it should be. A sign of the times? I hope you've discovered effective treatment from specialists who take pride in their care of you. Sending you well wishes and strength to endure. Rebecca (comm advc)

    2. This is such a good question! And I am sure there's a lot that can be shared on this topic.
      I have been living with AxSpa for at least nine years, and have done a lot to manage the condition, get some control back and live better with it. I can say today that I am doing pretty well and have changed my life to adapt, and I actually love my new life 😀

      Looking back on my journey so far, I would say that keeping an open mind on the condition and ways to cope with symptoms really helps. That might mean having an holistic approach to it and use traditional as well as alternative medicine to manage AxSpa.
      That could also be that whilst one doctor or practitioner might say something to you, seek for evidence and maybe get opinions from other professionals before taking any decisions regarding treatment and care if you are not fully convinced by the options proposed to you.
      Or, knowing that AxSpa being a physical condition, I think keeping an eye on our mental health, our emotional state and spiritual wellbeing can help with understanding the symptoms, the potential flares, and how to be resilient and keep strong at the same time. The body - mind connection is one of my key insights in learning to live with

      I am aware that when we are newly diagnosed, it is easy to be overwhelmed by the information received and the visit to the doctors. We need answers and strategies to cope. An open mind is useful to put in place new habits, routine and coping mechanisms that will work for us.

      Take care everyone!

      1. Getting diagnosed with Axial Spondyloarthritis is overwhelming. You may have a sense of relief for finally being diagnosed. But there is grief for the unexpected and how you will manage to maintain your independence. There are good days and many bad days with this disease. But it is important to constantly try to live life one day at a time. When the pain is overwhelming, focus on one moment at a time. It takes a lot of mental strength to live with chronic pain and the various changes that your body goes through in a lifetime with chronic illness. But I have been doing this for over 25 years since diagnosed and even longer because I have had symptoms all of my life. It has not been easy, but I'm managing and have maintained my independence.

        This disease can affect you from head to toe. So it is so important to build yourself your own team of good physicians that meet your needs. Do not ever waste your time and money on continuous visits to doctors that disregard you. They don't deserve to have your life in their hands. Replace them immediately. I highly recommend asking your favorite physician about specialists that they would recommend to you. I have found that doctors will often recommend their other physician friends. They will do a great job communicating with one another about your care because they are friends. So this is a benefit to you and makes it easier than trying to figure out all of these specialists on your own. In addition to my rheumatologist, I currently see an eye doctor for my chronic dry eye and uveitis, a neurologist for the migraines caused by my spondyloarthritis, a podiatrist for my foot pain and plantar fasciitis, a gastroenterologist for the gut issues. I have had to see a few other specialists for short term reasons in the past. But I am so thankful that I finally learned how to build my team.

        Axial spondyloarthritis is tough, but you are tougher because you beat it every single day. Keep fighting!

        1. Such wise words. Yes to all of this information. Thank you for sharing your experience and your wisdom. I have a circle of doctors such as this who all communicate and share tests, labs, and exams - to help support me going through this disease. It's so very important. Well wishes fellow traveler. Rebecca (comm adv)

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