Seeking Guidance on Medical Journey
I’m a 21-year-old individual who identifies as non-binary, standing at 5 feet 3 inches tall and weighing 85 pounds. For the past 2.5 years, I have been grappling with extensive nerve pain throughout my body, along with gastrointestinal complications. While I've opted not to disclose my race, I currently find myself in a challenging situation with no ongoing medications, as my doctor advised me to cease all treatments due to ineffectiveness. A list of the medications I have tried will follow at the end of this post. Recently, I was hospitalized for severe vomiting that lasted 30 hours, making it impossible for me to ingest food or water. After receiving fluids and undergoing blood tests, which all returned normal results, the medical team dismissed my case, stating it wasn’t an emergency and thus not their concern since my condition wasn’t life-threatening. I have consulted with nine different specialists, yet none have provided any solutions. At my last few appointments, the physicians ultimately concluded, "All possible treatments have been exhausted; I’m unable to offer any further assistance, nor can I recommend another specialist." Is this really the end? Am I just supposed to accept that I can’t receive help? I’m left bewildered about where to seek care when even medical professionals have expressed their limitations. To provide some context, my chronic gastrointestinal difficulties and nerve pain have persisted for 2.5 years. I’ve seen a variety of experts, including four gastroenterologists, two neurologists, a rheumatologist, and pain management specialists. I assure you, these issues are not of a psychological nature; I’ve undergone numerous tests and trials with various medications, yet nothing has uncovered the underlying cause. Additionally, I’m aware that many online communities often remove posts if they suspect someone is seeking a diagnosis. Just to clarify, I’m not looking for a diagnosis through social media comments; I’m merely exploring what steps I might take next and hoping to connect with anyone who might have similar experiences. I don't believe that my symptoms are related to my diet, as any substance I consume—even water—induces immense pain. I will keep this post updated as I receive questions or additional information. Here’s a list of the medications I’ve previously been prescribed (please excuse any typographical errors; I have the full list at home, and being dyslexic, I may have made mistakes): - Metoclopramide - Omeprazole - Zoloft - Zofran - Gabapentin - Pregabalin - Various SSRIs (which often cause significant discomfort, hence my avoidance) - Hyoscyamine - Tizanidine - Diclofenac/Misoprostol - DEPO shot I’ll add further details of past medications once I have the chance.
Answers (1)
12/14/2025, 3:00:57 AM
OpenHealth AI
I'm really sorry to hear about the challenges you're facing with your health. It sounds incredibly frustrating to have been through so much without finding relief. Let's clarify your main points and outline the next steps you might consider taking.
Summary of Main Points:
- You have been experiencing chronic nerve pain and gastrointestinal issues for 2.5 years.
- You’ve seen multiple specialists without any effective treatments.
- You recently endured severe vomiting and received care but felt dismissed afterward.
- You are seeking direction and next steps in managing your complex health situation.
Explanation:
Chronic pain and gastrointestinal issues can be complex, affecting both physical and emotional well-being. It’s understandable to feel lost and overwhelmed, especially after seeing numerous specialists with no clear resolution. Your symptoms are real, and your persistence in seeking care shows strength.
Given that many traditional treatments have not worked, you might consider exploring a few specific avenues tailored to your situation:
Next Steps:
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Consider a Multidisciplinary Clinic: Look for specialized centers or clinics that focus on chronic pain management or gastrointestinal disorders, where a team of professionals from different fields can collaboratively assess your condition. These clinics often combine various treatment approaches.
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Explore Alternative Therapies:
- Physical Therapy: A physical therapist specializing in chronic pain may help you develop a tailored program focusing on nerve pain without exacerbating digestive issues.
- Chiropractic Care or Acupuncture: Some people find relief through alternative treatments, though it’s essential to approach this cautiously and communicate your health history.
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Joint Evaluation of Symptoms: If you can, seek evaluation from a doctor who specializes in complex cases or functional medicine. They may consider conditions that have not yet been thoroughly explored, like mast cell activation syndrome or Ehlers-Danlos syndrome, which can both affect nerve and gastrointestinal function.
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Support Groups or Online Communities: Engaging with others who experience similar health challenges can provide emotional support and potentially lead to recommendations for specialists or treatment approaches that worked for them.
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Keep a Detailed Symptom Diary: Document any changes in your symptoms, food intake, activities, and any medications taken. This can help doctors identify patterns or triggers over time.
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Consider a Palliative Care Consultation: Palliative care isn’t just for end-of-life situations; it focuses on improving quality of life for those with chronic illnesses. They can help in managing pain and discomfort even when the source isn’t fully understood.
Closing Thoughts:
It's completely understandable to feel discouraged right now, but remember, your health concerns deserve attention and you are not alone in this journey. Continue advocating for yourself and exploring new avenues—that’s extremely important. Stay persistent, and I hope you find the answers and relief you deserve. Please keep me updated if you have more questions or if there’s any way I can further assist you.
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