Request for Insights and Guidance
At 25 years old and having a height of 5’3” with a weight of 200 lbs, I identify as AFAB and am currently on a regimen of medications. These include lamotrigine 200mg, duloxetine 60mg, vitamin D at 5000 units, amitriptyline 50mg, levothyroxine at 25mcg, propranolol 10mg taken three times a day, zyrtec at 10mg four times a day, tizanidine 4mg twice daily, and famotidine 20mg twice daily. For the past decade, I have been grappling with debilitating back pain that originated when I was just 15. My medical history reveals diagnoses of hypermobile Ehlers-Danlos syndrome and degenerative disc disease, along with Hashimoto’s disease, POTS, MCAS, endometriosis, SFN, and IC/BPS. In addition to severe back discomfort, I also experience acute pelvic pain, bilateral sciatica, and sensations of numbness and weakness. I have even sought emergency care due to the intensity of my pain. I've been engaged in physical therapy intermittently since I was 15 and have explored various treatments, including chiropractic care, acupuncture, massage therapy, TENS units, heat applications, NSAIDs, gabapentin, and narcotics, especially following a car accident last October. Unfortunately, none of these approaches have provided relief. Despite my gynecological surgeon ruling out endometriosis as a source of my pelvic pain, both my therapist and primary care doctor have advised that surgery is my final recourse, leading to my discharge from both standard physical and pelvic therapy. I am reaching out to see if anyone has insights or recommendations. Additionally, I suspect the yellow arrows might point to potential Tarlov cysts, which are often observed in individuals with hypermobile Ehlers-Danlos syndrome but frequently dismissed as mere incidental findings—even if they can contribute to pain. My recent report noted a few mild bulges, yet I am unable to consult a neurosurgeon until February 10. In the meantime, I am eager to gather as much information as possible to advocate effectively for my health and avoid being misunderstood by another healthcare provider.
Answers (1)
2/4/2026, 12:30:41 AM
OpenHealth AI
It sounds like you’re facing a complex situation with multiple chronic conditions that are significantly impacting your quality of life. The combination of hypermobile Ehlers-Danlos syndrome, degenerative disc disease, and other diagnoses understandably contributes to your persistent pain and discomfort. Let's focus on actionable insights that might help you as you prepare for your upcoming consultation with the neurosurgeon and advocate for your health.
Key Points for Focus:
- Document Symptoms and Pain Triggers
- Explore Comprehensive Pain Management Strategies
- Assess the Role of Imaging Findings
- Prepare for Neurology Consultation
Explanation:
Your history suggests that traditional treatments and physical therapies have not provided the relief you need. It's important to understand the interplay between your conditions and how they might contribute to your symptoms, especially with your suspicion of Tarlov cysts. You’re right that they can sometimes lead to pain but often don't receive appropriate attention in many cases.
Next Steps:
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Monitor and Document Symptoms:
- Keep a detailed diary of your pain experiences. Note the intensity, location, duration, and any triggers (e.g., certain movements, physical activities, or positions). This information can be invaluable for your healthcare providers and help identify patterns that might assist in finding more effective treatments.
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Focus on Pain Management Strategies:
- Since previous therapies have not been successful, consider exploring multidisciplinary approaches such as:
- Pain management clinics: These facilities specialize in comprehensive treatment plans that might include medication adjustment, physical therapy techniques, and psychological support.
- Cognitive-behavioral therapy (CBT): This can be beneficial, particularly with chronic pain, to help cope with the emotional aspects.
- Mindfulness and relaxation techniques: Keep in mind that methods such as meditation or gentle yoga can provide some symptom relief and enhance your overall well-being.
- Since previous therapies have not been successful, consider exploring multidisciplinary approaches such as:
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Evaluate Imaging and Neurological Findings:
- Once you obtain your imaging reports, especially indicating bulges or potential cysts, ensure you spotlight these during your appointment with the neurosurgeon. It's crucial they understand how these findings might relate to your pain and other symptoms. Highlight your history of Ehlers-Danlos syndrome, which can complicate typical presentations of such findings.
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Prepare for Your Neurosurgery Consultation:
- Bring your symptom diary and a list of all previous treatments tried, both successful and unsuccessful. For the upcoming appointment, prepare specific questions around how Tarlov cysts could be impacting your symptoms or any alternative treatments that might be considered.
Remember, you're on a journey toward managing a complex interplay of conditions. It's vital to continue advocating for your health and seeking access to the care that addresses the unique aspects of your situation. If you need further information on any of these suggestions, feel free to ask.
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