Over a Decade of Right-Sided Pain and No Clear Diagnosis: Seeking Insights
Greetings everyone — I am a 22-year-old male grappling with** intense pain on the right side** of my body and neurological issues that have persisted for **more than ten years**. Despite undergoing multiple clean MRIs in different regions (cervical, thoracic, and lumbar), my condition continues to deteriorate, and I find myself without a solid explanation. I've consulted various specialists, including neurosurgeons, neurologists, cardiologists, gastroenterologists, and rheumatologists, yet nobody has been able to provide clarity on my situation. I’m reaching out in hopes that someone might share a similar experience or offer recommendations for potential next steps. # Key Symptoms: - **Persistent headache on the right side coupled with cognitive fog** - **Tension across the right side of my body**: affecting my jaw, eyelid, glute, chest, thigh, ankle, and fingers - **Fascial tightness** that intensifies with any movement or misalignment - **Numbness, itching, and pins-and-needles sensations in my right genital area**, along with sporadic saddle region numbness - **Experiencing tremors, cold sweats on my hands and feet**, light sensitivity, and episodes of spacing out - **Post-urination dribbling** along with IBS-like symptoms and tightness near the site of an appendectomy - **Diminished sensitivity to touch on the right side** # Reaction to Movement: - When my **right hip rotates backward**, it feels as if **a nerve is being pulled**, triggering headaches, jaw clenching, and the re-emergence of fascial tension - Conversely, if my **right hip shifts forward into a neutral position**, I notice an improvement in my brain fog and overall symptoms - Techniques such as **craniosacral therapy, fascial counterstrain, and wearing an SI belt** offer temporary relief, although the original patterns of discomfort consistently return - A physical therapist once realigned my spine (similar to treatments given to patients with Chiari malformation), and **I experienced an immediate alleviation of brain fog**, but the relief was short-lived as the tension reappeared within hours # Treatments Undertaken: - Received **clear MRIs** of lumbar, thoracic, and cervical regions - **EMG conducted on my left leg** came back largely normal with minor quad thinning, yet my numbness is confined to the right side - Have not yet done an upright MRI, flexion-extension imaging, or myelogram - I lack a formal diagnosis of Ehlers-Danlos Syndrome, but I have reason to believe there may be an issue with connective tissues (I exhibit hypermobility) - The only combination that provides some aid is **caffeine, glycopyrrolate, and guanfacine**, which merely helps me manage my day-to-day activities.
Answers (1)
7/27/2025, 3:20:44 PM
OpenHealth AI
I'm sorry to hear about the long-standing pain and neurological issues you've been experiencing. It sounds incredibly challenging to navigate through such persistent symptoms without a clear diagnosis. Your detailed account helps in understanding the complexity of your situation.
Main Points:
- Your symptoms are multifaceted, affecting different areas and functions on your right side.
- Previous imaging and tests have not provided a diagnosis, but you have experienced temporary relief from specific therapies.
- Pursuing further testing may yield new insights.
Explanation:
The symptoms you describe suggest a complex interplay possibly involving neurological, musculoskeletal, and connective tissue aspects—particularly given your hypermobility. Conditions like Ehlers-Danlos syndrome could lead to issues with nerve entrapment, joint instability, and resulting pain and neurological symptoms. It’s also important to consider how movement patterns, posture, and stress can affect your pain levels and overall wellbeing.
Next Steps:
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Consider Further Imaging:
- An upright MRI or flexion-extension imaging may help identify issues not visible in standard MRIs, especially concerning cervical spine alignment or other dynamic conditions.
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Explore Connective Tissue Disorders:
- Since you suspect a relationship to Ehlers-Danlos syndrome, consult a geneticist or a rheumatologist specialized in connective tissues to evaluate this possibility more thoroughly.
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Physical Therapy Re-evaluation:
- Since you experienced temporary relief after spinal realignment, seek out a physical therapist with a background in treating connective tissue disorders and chronic pain. Focus on rehabilitation exercises that stabilize the joints on your right side and improve posture.
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Symptom Management Techniques:
- Continue using supportive tools like the SI belt. Consider investigating other supportive measures like orthotics, ergonomic adjustments at work/home, and possibly therapeutic exercises that promote proper alignment, such as Pilates or yoga, tailored for hypermobility.
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Monitor Your Symptoms:
- Keep a symptom diary that logs any patterns, triggers, and the effectiveness of various treatments. This may help identify correlations and guide your healthcare providers in tailoring a more effective treatment plan.
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Mind-Body Techniques:
- Since you're experiencing brain fog and cognitive fatigue, practices such as mindfulness, meditation, or even cognitive behavioral therapy may help you manage stress and improve mental clarity.
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Nutritional and Lifestyle Considerations:
- Discuss your caffeine and current medication regimen with a healthcare provider, as they might impact your symptoms. A nutritionist familiar with chronic pain might suggest adjustments that could help manage IBS-like symptoms as well.
I empathize with your frustration as you seek clarity and relief. Each of these steps is aimed at narrowing down potential causes while also providing some immediate strategies to help manage your symptoms. Remember, you are not alone in this; continuing to seek support from healthcare providers who listen and take your concerns seriously is essential. Take care, and please feel free to share any updates or further questions you have.
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