OpenHealth Q&A

Navigating Scoliosis, AUDHD, and Severe Pain: Seeking Guidance

Hello everyone, I’m reaching out to share my struggle and to seek advice. I’m a 25-year-old woman from Brazil, standing at about 168cm and weighing 67kg. I have a challenging background, dealing with both Autism and ADHD, for which I'm currently prescribed Vyvanse at 30mg. \n\nRecently, I’ve been coping with an intense level of pain stemming from my diagnosis of scoliosis, which is over 50 degrees. The situation has noticeably worsened since the new year. I've attached some images for reference, and my last Cobb angle assessment was back in 2019. I underwent a CT scan just yesterday, and I will provide those results as well. Prior to January, while I did frequently experience some discomfort—particularly in the evening—I managed it with minimal medication. I typically avoided tramadol because its side effects made me feel extremely nauseous and constipated. \n\nThis year has been different, though; my usual pain management medication, Tormiv (known as Trometamol ketorolac in Portuguese), has stopped being effective. After a visit to the ER and an emotional conversation with my neurologist—who manages both my Autism and ADHD—I was prescribed Tapentadol, which I have been reliant on since February 23rd. Since February 14th, I've found myself nearly confined to bed, unable to attend college due to the debilitating pain that feels unmanageable. I requested a leave from school as I just couldn’t keep up, and on most days, I struggle to maintain my living space, only cleaning when absolutely necessary because it exacerbates my discomfort. \n\nMy back struggles date back to my childhood at ages five or six, when I would frequently complain about pain that my parents brushed off as something everyone experienced. It wasn’t until I lost a significant amount of weight at the age of 18—due to depression—that the noticeable curvature of my spine became apparent, leading to my scoliosis diagnosis. I spent some time in physical therapy and tried Pilates, but then came the pandemic and my life took a drastic turn, causing me to neglect my self-care. Last year, I did join a gym for a couple of months, but I only engaged in light exercises out of fear of reinjuring myself. I also started a home-based online baking business, which, during the busy holiday season, kept me on my feet for extended periods. What I once managed without issue now seems to have led to serious consequences because my pain only escalates with each day. \n\nThe pain isn't limited to my back alone; I also feel discomfort in my knees and elbows, which strikes me as atypical for someone my age. Yet, with the more severe pain in my lower back radiating down my left leg and causing tingling sensations, I focus primarily on that area. Tapentadol provides some relief, but it’s not fully effective. I initially dealt with constipation during the first ten days of treatment—common laxatives caused severe adverse reactions for me. However, I recently discovered Muvinlax, which has been quite beneficial. Under normal circumstances, I have a pretty good routine for bowel health. On a pain scale, I would rate my chronic pain an 8 out of 10, often confined to bed with a heat bag on my back, experiencing numerous painful spasms. \n\nNext week, I’m scheduled to consult with a neurosurgeon who will evaluate my CT scan results and advise me on potential next steps. This pain has drastically affected my daily life. Many of my career aspirations are now in jeopardy; jobs requiring long periods of standing, like working in a kitchen, seem impossible, and even scuba diving may become out of the question after surgery. I’ve recently been accepted into veterinary school, but I worry that my health issues might hinder my attendance. \n\nI also plan to consult a chiropractor this month, acknowledging that it’s costly and I’m financially strained due to the overwhelming expenses for healthcare and medications. I aim to return to Pilates just once a week, hoping that combined therapies may provide some relief and reduce my dependency on Tapentadol. \n\nI’m eager to hear your thoughts, advice, or any helpful insights you might have. Some days, I find myself feeling desperate, fearing the notion that my condition will only deteriorate, potentially leading to severe disability in the future. \n\nFor additional context, I have high myopia (-10 in each eye), which I treated with LASIK surgery this past January, and I’m also hypermobile. On top of this, I have dental issues (spacing, overbite) that I’ve neglected due to my aversion to dental visits. \n\nThank you for reading my long post. I hope some of you will be able to provide insights or reassurance as I navigate this challenging phase of my life. I'm wrestling with worries about how I will manage my finances and autonomy when even simple tasks, like doing dishes, can cause intense discomfort. I'm truly grateful for any support you can offer. \n\nBefore I forget, my neurologist suggested I explore the possibility of Ehlers-Danlos syndrome (EDS). I found a checklist online and filled it out as best as I could but haven’t discussed it formally with a doctor yet. Admittedly, my upbringing conditioned me to think that unless you were critically ill, doctor visits weren’t necessary, so I haven’t sought medical attention for many things until now. I will include my CT scan and imaging results here as well for reference.

Answers (1)

3/22/2025, 11:11:11 PM

OpenHealth AI

It sounds like you are experiencing a very challenging situation with your scoliosis, chronic pain, and the impact on your daily life. Your concerns are completely valid, and it is understandable to feel overwhelmed given the intersection of these medical challenges. You have taken some important steps already, including seeking pain management and planning consultations with specialists, and that proactive approach is key.

Main Points:

1. Pain Management & Medical Consultations: You have been prescribed medications for pain, but you're still experiencing significant discomfort. You're also scheduled to see a neurosurgeon and a chiropractor soon, which are both positive steps.
2. Daily Challenges & Accommodations: Your pain is affecting your ability to study and manage daily tasks. It's important to find manageable ways to cope with pain and maintain some quality of life.
3. Exploring Ehler-Danlos Syndrome (EDS): Discussing the potential EDS with your neurologist is crucial, as it might provide insights into your symptoms and inform your treatment direction.

Explanation:

Scoliosis with a significant curvature can indeed contribute to chronic pain and discomfort, including the symptoms you're experiencing in your knees and elbows. The fact that the pain has worsened significantly indicates that close monitoring and potentially more aggressive intervention may be necessary.

Pain can be tricky, especially when it involves neurological discomfort like tingling. Tapentadol has helped but is not fully effective. Your proactive approach in seeking additional support from specialists is vital, especially with the pain becoming so debilitating.

Next Steps:

1. Complete Upcoming Consultations:

   • After receiving your CT scan results from the neurosurgeon, ensure you fully discuss your pain, any new developments, and options moving forward, including surgical options if necessary.

2. Chiropractic Follow-Up:

   • When meeting with the chiropractor, be honest about your pain levels, the specific areas affected, and your medical history. They may offer techniques that can help alleviate some discomfort but proceed with caution, particularly given your spinal condition.

3. Monitor & Adjust Pain Management:

   • Keep a detailed pain journal, noting when pain increases, what activities exacerbate it, and how medications help. This will provide valuable information for all your healthcare providers. Consult with your neurologist or pain specialist about your current pain management regimen and any side effects you're experiencing.

4. Engage in Gentle Movement:

   • If possible, gradually return to light exercise (like walking, stretching, or Pilates) as tolerated, aiming for a routine that promotes muscle strength without exacerbating pain. Consider working with a physical therapist who can tailor exercises specifically for your condition.

5. Explore EDS Evaluation:

   • Discuss your findings regarding EDS with your healthcare provider. If appropriate, they may refer you to a specialist for a thorough assessment, which could lead to a better understanding and management of your symptoms.

6. Plan for Daily Living Adjustments:

   • Identify tasks and activities that trigger your pain. Explore using tools or aids that make these tasks easier to manage. Techniques such as pacing your activities and resting when needed may also be beneficial.

7. Financial Assistance:

   • Investigate any healthcare support services available in your region that can assist with your medical expenses, including patient advocacy groups that can guide financial resources.

8. Emotional Support:

   • Consider speaking with a mental health professional who understands chronic pain and can support you through this emotionally challenging time. This may include counseling or support groups for individuals with chronic pain or disabilities.

Remember, you're not alone in this journey, and taking proactive steps towards managing your health is commendable. It’s crucial to maintain communication with your healthcare providers about all your concerns, both physical and emotional.