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Navigating Life with AS and AxSpa: Coping Strategies and Experiences

Living with a chronic condition like ankylosing spondylitis can present numerous challenges, both physically and emotionally. From managing pain and stiffness to adapting to changes in daily routines, individuals with ankylosing spondylitis often develop unique coping strategies. We want to hear about your experiences and insights!

Share with us how you cope with the challenges of living with ankylosing spondylitis. What techniques, habits, or resources have you found helpful in managing your condition and improving your quality of life? Your perspective could provide valuable support and inspiration for others facing similar difficulties.

Consider discussing topics such as:

1. Pain management techniques: What approaches or therapies have you found effective in reducing pain and stiffness associated with ankylosing spondylitis? Are there specific exercises, medications, or alternative treatments that have worked for you?

2.Lifestyle adjustments: How have you adapted your daily routines, work, or leisure activities to accommodate the limitations or challenges posed by ankylosing spondylitis? Are there specific ergonomic tools, assistive devices, or modifications you have implemented to make your environment more comfortable?

3. Emotional well-being: Ankylosing spondylitis can impact your mental health and emotional well-being. What strategies have you employed to maintain a positive mindset, cope with stress, or deal with anxiety and depression related to the condition? Have support groups, therapy, meditation, or other practices been beneficial for you?

4. Relationships and support systems: Living with ankylosing spondylitis can affect relationships with family, friends, and colleagues. How have you communicated your needs and limitations to your loved ones? Have you found support from others who share your condition, either in-person or through online communities?

4. Seeking medical care: Have you faced any challenges or found success in navigating the healthcare system while managing ankylosing spondylitis? How have you advocated for yourself, accessed appropriate treatments, or collaborated with healthcare professionals to optimize your care?

By sharing your personal coping strategies and experiences, you can offer valuable insights and encouragement to those living with ankylosing spondylitis. Together, let's create a supportive environment where we can learn from one another and find strength in our shared journey.

  1. Music does help me, but for only the time I am playing youtube. Once I shut it down, then I'm back to the old pain.

    1. Finding activities that bring comfort, even for a short time, is valuable. Have you considered creating playlists or finding specific genres or songs that resonate particularly well with you during these moments? Having a personalized collection of music that you enjoy might help extend the positive effects beyond the time you're actively listening. Furthermore, you might explore other forms of distraction or relaxation techniques to complement the benefits of music, which could include mindfulness exercises, gentle stretching, or engaging in hobbies that bring you joy. although these activities may not eliminate the pain, they could offer moments of respite and contribute to your overall well-being. Thanks for sharing what helps get you through the rough patches. Warmly - Rebecca (community moderator)

  2. I have a new coping strategy that sounds absolutely ridiculous but it's helping!

    We aren't 100% sure that whether I have Ax Spa or PsA because my initial symptoms started in my lumbar spine 35 years ago with no other joint involvement. I was only diagnosed with spondyloarthritis a bit over a year ago.

    I've had 3 spine surgeries including the dreaded lumbar fusion with instrumentation. My L-spine and C-spine are messy. I'm also polyarthritic with elbows, knees, wrists, shoulders, feet and hand involvement. I'm also osteopenic. Yeah me!

    So my new coping strategy is STRENGTH TRAINING! I know, right? Insanity! But not really.

    I did my research and after spending closer to 2 years building up my body from being homebound and struggling to function at all to now having a personal trainer at a gym.

    This was a process and involved physical therapy, diagnosis, treatment, walking short distances and losing 25 pounds.

    I love, love, love that I am making my bones muscles and total body stronger. My doctors are thrilled. I'm being very careful and my trainer is awesome. He pushes me when it's appropriate but listens to me when we try a new piece of equipment and I tell him it's not going to work.

    Yes, there is increased pain but it doesn't stay elevated for long and I feel so much more physically stable and strong. I've come a long way in 2 years.

    1. for me it started with physical therapy. I spent from May until mid August waking up my joints and ligaments.

      After that I joined a gym and took advantage of the four free personal training sessions they offered. Once I found the right trainer who understood my limitations, we started out slowly. We spent two sessions just figuring out how much I could handle.

      I think we are all different so what works for me probably wouldn't be ideal for most people. The biggest thing though is to accept that there's going to be increased pain at first so plan for it. And give yourself some time before throwing in the towel. I decided that I was going to stick with PT for at least a month. Then I did the same when I joined a gym.

      And be adaptable. Right now I'm between immunosuppressants and the weather is getting colder. I'm taking the rest of the year off from strength training and just concentrating on using the treadmill at least 4 times a week. On the good days I go faster and use a higher incline. On bad days I go slower and use less resistance. But keep moving unless you go into a flare.

      Hope this helps!

    2. ,
      I'm in awe! Thanks so much for sharing and inspiring others.
      ~Doreen (Team Member)

  3. I am lucky to be retired, so that when the pain is at its worst, I can let the pain and fatigue dictate what I do. I find that when I am active, the pain seems to go down.

    1. It's understandable that dealing with Axial Spondyloarthritis (AxSpA) can bring challenges, and it's great that you've found a way to adapt to the situation by being flexible with your activities, especially during times when the pain and fatigue are more pronounced. Retiring and having the flexibility to listen to your body's signals can be a valuable strategy in managing your condition. Thanks for sharing what works for you. Regards, Rebecca (community moderator)

  4. Gentle regular exercise like walking, stretching, heat pad, low fod map diet for gut issues, bio freeze spray for pain works well too. Illustrating and writing great for taking my mind off everything. Finding something you love to do and doing it daily brings joy when in pain. 😊

    1. these are great strategies thank you for sharing with us. I love writing as well just to ease the mind and let everything you feel out. Thank you these are all great tips.

      Nicky (Team Member)

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