OpenHealth Q&A

Navigating Chronic Pain with Ankylosing Spondylitis and Unexplained Symptoms

I am a 19-year-old female, standing 5 feet tall and weighing 145 pounds. My medications include sulfasalazine, Celebrex, and testosterone. Living with ankylosing spondylitis (AS) has led to a persistent sensation of pressure in my spine, along with random discomforts and occasional moderate weakness in my legs. My journey towards diagnosis began with leg pains that were traced back to a herniated disc. The process started like many others: visiting a general practitioner to obtain an X-ray, which surprisingly revealed no apparent issues—although I have never had the chance to review these images. Afterward, I was referred to physical therapy, which unfortunately exacerbated my discomfort, leading me to consult a neurologist. The neurologist recommended an MRI, which revealed that my L5-S1 disc had herniated two times prior to the scan. His advice was to continue using crutches (which I had purchased myself) for better mobility and to focus on rest. While the pain subsided slightly, it never fully dissipated. An orthopedic surgeon later suggested that my only option for relief would be an epidural injection, which I declined. Consequently, I decided to abandon further pursuits for solutions regarding my back pain and the tingling and weakness in my legs. Eventually, I saw a rheumatologist who performed a whole blood panel, looking for indicators of lupus—though it is often said “it’s never lupus.” My symptoms included dizziness, ongoing nausea, frequent headaches, fatigue, and unexpected fluctuations in blood sugar levels (peaking at 264 after a meal at Wendy's and dropping to the low 50s three hours later). However, despite these alarming symptoms, my A1C levels returned normal, and I experienced the telltale butterfly rash during flare-ups. After comprehensive blood tests performed by my general practitioner—including CBC, CMP, lipid profile, rheumatoid panel, sedimentation rate, and TSH—most results came back normal, except that I tested positive for rheumatoid factor. Following further analysis, we confirmed that I do not have lupus, but I was found to have the HLA-B27 gene mutation. To confirm my diagnosis of AS, I had X-rays done, and I am currently on a DMARD in conjunction with Celebrex. The remaining symptoms are still somewhat of a puzzle, and I find myself uncertain about the next steps. Recently, while sorting through items, I improperly lifted a bag of clothes, triggering pain in the same area where I previously experienced discomfort due to the herniated disc. The pain radiates into my left buttock, making it nearly impossible for me to stand upright. Unfortunately, the combination of Celebrex and sulfasalazine seems ineffective in managing my pain. My options are limited due to potential drug interactions, leaving Tylenol as my only alternative; however, I've consistently found it ineffective even for minor headaches. I am uncertain about the management of what I suspect to be a recurrence of a herniated disc for the third time. Balancing my college life requires me to walk extensively to attend classes and meals, but the worsening pain is rendering my crutches almost inadequate. If anyone has insights or possible solutions regarding my ongoing “mystery issue,” I would greatly appreciate any advice. It feels as though I have explored every option available without receiving any concrete answers.

Answers (1)

2/2/2026, 5:30:54 PM

OpenHealth AI

I'm sorry to hear about the challenges you're facing with chronic pain and the complications stemming from ankylosing spondylitis (AS) and your previous herniated disc. It sounds like you're navigating a complex situation with multiple symptoms, and it's understandable to feel frustrated. Here’s a structured approach to help you manage your symptoms and consider potential next steps:

Main Points

1. Manage your current pain and discomfort.
2. Consider modifications to your treatment plan.
3. Explore supportive therapies and lifestyle adjustments.

Explanation

Chronic pain, especially with conditions like ankylosing spondylitis and a history of herniated discs, can be challenging to manage. Your symptoms of spinal pressure, leg weakness, and varying pain levels may be interrelated, as both AS and disc issues can contribute to discomfort and neurological symptoms. It's crucial to have a comprehensive strategy to address these overlapping symptoms.

Next Steps

1. Medication Management:

   • Discuss Pain Management Options: Talk to your healthcare provider about possibly adjusting your current medication plan. Given that Celebrex and sulfasalazine haven't provided sufficient relief, additional options like stronger pain relievers, anti-inflammatory medications, or topical treatments may be considered.
   • Physical Therapy Reassessment: Since physical therapy hasn't been beneficial, a re-evaluation with a physical therapist experienced in chronic pain and AS may offer alternative therapeutic exercises aimed at improving mobility and lessening pain without exacerbating symptoms.

2. Pain Relief Techniques:

   • Heat and Cold Therapy: Applying heat (like a heating pad) can relieve muscle tension and pain, while cold packs can reduce inflammation. Consider alternating between both to see what provides the best relief for you.
   • Mind-Body Techniques: Engage in mindfulness practices such as yoga or meditation, which have shown improvements in pain management and may enhance your overall well-being.

3. Lifestyle Adjustments:

   • Low-impact Exercise: Since mobility is a concern, focus on low-impact activities like swimming or cycling that can help maintain your fitness without putting additional strain on your back.
   • Ergonomic Support: Ensure your study environment is supportive; consider using a chair with good lumbar support, and take frequent breaks to reduce strain on your spine during long periods of sitting.

4. Monitor and Document Symptoms:

   • Keeping a detailed symptom diary can be instrumental in identifying patterns around your pain and other symptoms. Note how activities, medications, dietary choices, and stress levels correlate with your symptoms. This information can be invaluable during future consultations with healthcare providers.

5. Stay Informed:

   • Given your complex presentation, consider seeking a second opinion from a specialist familiar with both AS and neurological involvement, like a rheumatologist with expertise in chronic pain conditions.

Balancing college life with chronic pain can be challenging, but small adjustments can make a difference. Please remember you're not alone in this—continued advocacy for your health is paramount, and seeking community support (including peer groups for individuals with AS) can provide additional resources and coping strategies. If you have any further questions or need additional clarification, feel free to reach out.