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.
I have found that exercising in a warm pool relieves my pain best. I can do more in a pool than on land. I have PT exercises to do now that I finished pool therapy, but it doesn't give me the relief the pool does. I have severe depression on top all the other diagnoses. I take meds for it, see nurse practices every three months. My primary every three months for diabetes care. Rheumotologist told me there wasn't anything he could do for me. I don't understand that, I have a couple forms of arthritis. He gave me tramadol for bad flares. 14 tablets, but hasn't refilled for over year.
I can see why you miss the pool...it’s just not the same doing exercises outside of it. And having depression, diabetes, and arthritis all at once is a lot for anyone to deal with. I’m sorry your rheumatologist made you feel brushed off. Have you thought about trying a different doctor? You really do deserve better support and care that helps you manage everything day to day. -Latoya (Team Member) 
You are dealing with so much, and the depression makes everything a vicious circle. You aren't alone. Here is one of our health leaders' experiences with both depression and AS. But depression has an impact on your other conditions, too. Do you feel that your medical team takes all your illness in account when treating you? Hope you can get back to the pool soon! Warmly, Kathy (Team member)
Acceptance. Owning your disease and not having denial. Understanding this is how it's going to be , forever, with good days and bad and really bad. There is no cure, and most of the medications are, at best, short term band-aids with side effects.
You said it all. That is excellent advice. Thank you for sharing. One of our health leaders wrote about acceptance in this article for our community. All the best, Kathy (Team member)
I used to love playing the guitar as well but that was before I started having symptoms of RA. Now I have been diagnosed with RA AND Ankylosing spondylitis, so it is not easy to play. But I still love listening to music and singing along.
Music is a great healer, isn't it? You aren't the only one who uses music (even guitar) to help them get through it all. Here's an article by one of our health leaders who uses his guitar to help him through his day. He discusses how he has modified his guitar playing to accommodate his limitations from AxSpa. Do you have a playlist? All the best, Kathy (Team member)
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.
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)
