Navigating Life with Scoliosis and Autism: Seeking Support and Solutions
Greetings, Reddit community. I'm a 25-year-old woman from Brazil, currently grappling with over 50 degrees of scoliosis and severe chronic pain, particularly since the onset of this year. Living with autism and ADHD, I take Vyvanse (30mg) for my condition. My weight currently stands at 67kg, and I've noticed that I'm starting to shrink, which only adds to my concerns. Pain has been a longstanding issue for me, beginning as early as 5 or 6 years old. My parents overlooked my complaints about back discomfort, believing it to be a common childhood ailment. It wasn't until I lost a considerable amount of weight at 18 that they finally recognized I had a significant spinal deformity. Despite undergoing some physiotherapy and pilates, my ability to maintain any physical activity has been severely disrupted by the pandemic's impact on healthcare. For the past few months, I have been largely confined to my bed, struggling to manage daily tasks due to unbearable pain. Previously, I was able to tolerate discomfort with minimal medication but now find myself almost entirely reliant on Tapentadol, after unsuccessfully trying other painkillers. I’ve had to significantly scale back my activities, including baking for my small online business, which unfortunately exacerbated my condition. My condition has affected my quality of life profoundly. I often experience pain radiating from my lower back to my left leg, in addition to discomfort in other areas like my elbows and knees, which seems unusual for someone my age. Though Tapentadol provides some relief, it isn't effective enough, and I've faced complications like constipation from its side effects. Finding a balance with my pain management has proven challenging, especially as I haven't been able to find optimal solutions. Next week, I'm scheduled to consult with a neurosurgeon to discuss my CT scan findings. This meeting is crucial as it might outline my path forward. On a positive note, I have been accepted into veterinary school, but I do worry whether my health might hinder my ability to attend classes, which require extensive physical presence. In addition to seeking help from a chiropractor, I'm also hoping to resume pilates classes to improve my strength and potentially reduce my reliance on pain medications. I'm open to any advice or insights from this community that could lift my spirits. There are days filled with fear about my future and the potential deterioration of my health, leaving me worried I may become more incapacitated as time goes on. For additional context, I’ve had significant vision issues in the past that required LASIK surgery, and I have hypermobility. I’m now curious if there’s a connection between these issues and my current conditions, as I haven’t had the opportunity to fully investigate my health concerns due to my upbringing, which discouraged frequent doctor visits unless absolutely necessary. I look forward to any perspectives or suggestions you can share, as I am eager to find a way to gain control over my health and eventually support myself despite these challenges. Thank you for taking the time to read my story and for any encouragement you can offer me in this difficult phase of my life.
Answers (1)
3/24/2025, 7:40:43 AM
OpenHealth AI
It sounds like you're navigating a challenging situation with your scoliosis, chronic pain, and autism, and it’s understandable to feel overwhelmed. You're taking proactive steps by arranging a consultation with a neurosurgeon and looking into alternative therapies. Here’s a structured overview that may help you better manage your circumstances.
Main Points:
- Pain Management and Therapy: Current reliance on Tapentadol and your functional limitations need to be prioritized.
- Understanding Your Conditions: The interplay of scoliosis, hypermobility, and pain symptoms requires tailored exploration.
- Future Management: Engaging in supportive therapies and addressing psychological well-being is crucial, especially with your upcoming veterinary school commitment.
Explanation:
Scoliosis can lead to chronic pain and other issues, especially when it progresses beyond 50 degrees. The pain radiating to your leg and other joints may be linked to your spinal condition and hypermobility, making it essential to address these interconnected components. Your emotional concerns regarding your future and the impact on your education are valid, and seeking support for both mental and physical health will be beneficial.
Next Steps:
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Prepare for the Neurosurgery Consultation:
- Document Symptoms: Keep a detailed record of your pain levels and any activities that exacerbate or relieve your symptoms.
- Discuss Pain Management Options: Review potential alternatives to Tapentadol, considering non-opioid options, adjusting dosages, or exploring integrative therapies (e.g., acupuncture, physical therapy).
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Engage in Complementary Therapies:
- Physical Activity: Talk to your health provider about a rehabilitation program tailored to your needs. Pilates might be helpful, but consider a gentle approach focused on stability and flexibility, especially as you adjust to your pain levels.
- Chiropractic Care: While it can offer relief for some, ensure your chiropractor understands your scoliosis, autism, and related conditions. Seek reviews or recommendations beforehand.
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Manage Your Mental Health:
- Support Networks: Connecting with support groups (especially for chronic pain and autism) may provide valuable insights and emotional support.
- Mindfulness and Relaxation Techniques: Explore practices such as mindfulness, yoga, or meditation to help manage stress and improve coping strategies.
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Monitor Overall Well-Being:
- Nutrition and Hydration: Pay attention to your diet and water intake, as constipation from pain medications can exacerbate discomfort. Balanced nutrition might also support your energy levels for daily activities and studies.
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Educate Yourself:
- Research Connections: Explore potential links between your vision issues, hypermobility, and chronic pain. Understanding your health can empower you in discussions with medical professionals.
Closing Thoughts:
It's courageous of you to seek support and explore paths toward improvement despite your fears. Balancing your pain management while preparing for veterinary school is crucial, and you’re already taking steps in the right direction. If you ever feel overwhelmed, don’t hesitate to reach out to a mental health professional who can help you navigate these transitions. You're not alone in this journey, and there are avenues to regain control over your health. Please keep us updated!
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