OpenHealth Q&A

Struggling for Answers: My Ongoing Battle with Back Pain and Medical Neglect

At 22, having transitioned from female to male, I find myself grappling with a troubling medical situation. For nearly five years, I've endured severe discomfort in my lower back, yet my previous physician was hesitant to pursue any diagnostic testing, instead opting for a regimen of medications—a significant portion of which included Zaldiar. After a change in my healthcare provider, I was finally referred to various specialists and underwent multiple tests, revealing the diagnosis of spondyloarthritis. Following the diagnosis, I was prescribed a treatment plan necessitating bi-weekly injections of Idacio. Unfortunately, these interventions proved ineffective. Advising that physical activity might alleviate my pain only exacerbated my condition; each attempt at exercise resulted in heightened levels of agony. As time passed, my symptoms worsened and spread to encompass my entire back. By the summer of 2023, the pain migrated to my knees as well, but my new doctor dismissed my concerns entirely. The pain relief medications and injections were futile, seemingly failing at their purpose of controlling the progression of my condition. In October 2023, after months of limping and a sudden episode post-nap where I couldn't stand unassisted, I resorted to crutches for mobility. Another specialist expressed skepticism regarding my prior diagnosis and requested further imaging. Following this, I relocated once more and, facing a frustrating wait for my radiology appointment—nearly a year with no updates—I switched hospitals. At my new clinic, the specialist promptly ordered the necessary tests, which I completed within two months. By this stage, I was practically confined to a wheelchair due to excruciating knee pain, coupled with persistent discomfort across my back and neck, rendering crutches a challenge to use. A few days ago, I met with the new specialist, and the consultation fell short of my hopes. I conveyed my ongoing struggle with the current medications—Captor every eight hours, Celecoxib daily, and cortisone during flare-ups lasting 9 to 14 days—without relief. I detailed my prolonged flare-ups, the latest of which has persisted for over a month, causing unbearable discomfort when seated for more than short periods. Despite being aware of my struggles from our initial appointment, he proclaimed my condition could now involve a herniated disc, insisting further diagnostic clarity would take time, particularly for someone of my age. I reminded him of my existing diagnosis, albeit under scrutiny, but he opted not to officially document any changes. Instead, he suggested I resume walking and referred me to rehabilitation, advising me to engage in exercise despite the uncertainty surrounding my ability to do so without pain. Although he recommended allowing another three months on my medications—unchanged for two years—he did not pursue additional tests. I’m trapped in this cycle of persistent pain, feeling as though my concerns fall on deaf ears once again. I’m also anticipating my test results to potentially shed more light on my situation, which I aim to share for further insight. I’m apprehensive about trying physical therapy, given that I dread the thought of exacerbating my condition or triggering additional flare-ups. To provide some additional context, I reside in Spain and have been on testosterone since November 6, 2018. Neither I nor my father can recall any family history related to similar health issues. When I palpate my lower back, I can feel some unusual bumps—though they are uncomfortable rather than painful. As this is my first Reddit post, I’m still navigating the platform. I apologize for any lack of clarity, and I’m open to any questions in the comments. Any advice or insights on potential avenues to explore would be immensely appreciated. Thank you for taking the time to read my experience.

Answers (1)

6/28/2025, 12:02:00 AM

OpenHealth AI

I'm sorry to hear about the struggles you've been facing with your back pain and the challenges in getting appropriate care. Your experience highlights a significant issue in managing chronic pain conditions, and I commend you for seeking to understand your health situation better. Here are some key points to consider:

Main Points

1. Spondyloarthritis & Pain Management: You have a diagnosis of spondyloarthritis, a type of inflammatory arthritis affecting the spine and possibly other joints. It’s essential to address both inflammation and pain effectively.
2. Importance of Comprehensive Evaluation: Given that your symptoms have evolved and new concerns, such as a potential herniated disc, have arisen, further diagnostic imaging may be necessary to clarify your current condition.
3. Physical Therapy & Rehabilitation: Although you have apprehensions about physical therapy, it can be crucial for improving mobility and managing pain, especially under the guidance of a professional experienced with chronic pain.

Explanation

Spondyloarthritis can lead to significant discomfort and limitations if not managed properly. The pain you feel can sometimes be compounded by anxiety about engaging in activities that might worsen your situation. It’s essential to have a comprehensive plan that addresses both the underlying disease and your quality of life.

Next Steps

1. Await Current Test Results: Since you have recent imaging completed, it’s important to follow up with your specialist about these results. They could reveal more about any structural issues in addition to the existing spondyloarthritis diagnosis.

2. Reassess Medication with a Specialist: Since your current medications haven't provided relief, look for a rheumatologist specializing in pain management and inflammatory conditions. They may consider alternatives, such as biologic medications or corticosteroid injections, tailored to your needs.

3. Engage in Physical Therapy: Seek a referral to a physical therapist experienced in chronic pain and spondyloarthritis. They can provide modified exercises that are gentle and effective, often incorporating pain management techniques that can help you build confidence in moving without exacerbating your symptoms.

4. Explore Alternative Pain Management Techniques: Consider discussing options for complementary therapies such as acupuncture, massage therapy, or mindfulness meditation. These can sometimes offer symptomatic relief and improve overall well-being alongside traditional treatments.

5. Document Symptoms: Keep a detailed diary of your pain levels, activities, and any flare-ups. This information can help healthcare providers better understand your condition and tailor your treatment plans more effectively.

6. Advocate for Yourself: If you feel your concerns are not being taken seriously, don’t hesitate to seek a second opinion. Your health and comfort should be the priority, and having a doctor who listens and formulates a plan with you can make a significant difference.

Support

Please know that you're not alone in this journey. Chronic pain can feel isolating, but there are communities and professional resources that can provide support. Engaging with both medical professionals and peer support groups may enhance your understanding and bolster your resilience.

Keep communicating openly about your concerns and experiences with your healthcare team. Your input is vital in finding an effective treatment plan. If you have any further questions or details to share, feel free to reach out.