Navigating Family Tensions and Personal Health Struggles
I'm a 30-year-old nonbinary individual, standing at 5'2" and weighing about 100 pounds. I deal with asthma, low ferritin levels, and a tethered spinal cord, and I previously experienced POTS in my younger years. Recently, I've been grappling with jaw issues that have made it excruciatingly painful to open my mouth, forcing me to rely on smoothie deliveries. My health symptoms include shortness of breath, numbness in my fingers and toes, confusion, clumsiness, and excessive sleep—roughly 14 hours a day. Along with these, I've started experiencing chest pain that feels unbearable, as if an elephant is pressing down just on my left side. Any attempt to move or lie down flat intensifies the discomfort, and my use of home oxygen doesn't seem to alleviate the situation. Additionally, I'm experiencing intermittent shaking without any clear reason, and although I've used my rescue inhaler several times, it hasn't provided relief. In August, I secured an appointment with a GI specialist who can refer me to a hematologist and conduct blood tests. I had intended to wait for that appointment. However, after experiencing worsening shortness of breath and severe chest pain last night—so intense it disrupted my sleep and caused me to wake up screaming—I feel I cannot wait any longer. My pain escalates when I move around or when I stop using my home oxygen. When I shared this troubling development with my mother and my patient advocate, who is a close friend of my mom, they seemed remarkably upset with me. Their responses were dismissive, attributing my symptoms to common dysautonomia flare-ups and reminding me of my history with asthma flares tied to my menstrual cycle. They implied that my situation could have been avoided had I used IV fluids, and they insisted that I must appear calm to receive treatment for my chest pain. Instead of rushing to get medical help, they suggested mindfulness techniques, which I reluctantly tried even though it didn’t help. I’m struggling with feelings of shame, convinced that my current predicament is somehow my fault. Even though I’ve been adequately hydrating with electrolyte drinks, my anxiety about needles caused me to delay getting an IV. On top of that, constantly waking up in pain has undoubtedly affected my decision-making. They did suggest I could seek urgent care for reassurance, but the exhausting process of leaving my apartment for the clinic felt daunting. Ultimately, I did agree to receive the IV, hoping it might offer some improvement in how I feel. I plan to wait for the nurse to arrive and gauge my condition before deciding on further action. My intention is to communicate how severe my symptoms are if the IV shows no effect. Despite my embarrassment and the stress this situation brings, I find that I’ve calmed down somewhat. I’ve adopted the mindset that whatever happens is part of a larger tapestry of existence, believing that the universe holds infinite possibilities. I truly want to believe that things will turn out fine. As a physically fit 30-year-old with just low ferritin levels, the idea that I could be having a heart attack seems far-fetched—even somewhat absurd. I need assurance that this is not my fault, and I am not meant to endure chest pain as a normal part of managing mild POTS and worrying about hydration.
Answers (1)
7/29/2025, 5:11:07 PM
OpenHealth AI
I'm sorry to hear about the difficult experiences you’ve been having. Your symptoms, especially the severe chest pain and shortness of breath, require immediate attention and cannot be dismissed as simply part of living with asthma or your history of POTS. It's important to recognize that your health concerns are valid, and you deserve to focus on your well-being without feeling shame.
Explanation
The combination of symptoms you’ve described—such as severe chest pain, shortness of breath, and numbness—needs thorough evaluation. While anxiety can exacerbate some symptoms, the degree of pain and distress you’re experiencing suggests a potential underlying issue that needs urgent medical attention. Remember that trusting yourself and seeking help when something feels wrong is crucial.
Next Steps:
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Seek Immediate Medical Care: Given the severity of your chest pain and other symptoms, reach out for urgent medical assistance. It's essential to tell the healthcare provider about all your symptoms in detail, without downplaying their severity. If you can’t go to the clinic, consider calling an ambulance. Your safety is the priority.
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Communicate Your Symptoms Clearly: When you see a healthcare professional, ensure to discuss:
- The intensity of your chest pain (describe it as you have here),
- The numbness in your fingers and toes,
- The significant fatigue and excessive sleep,
- Any changes you’ve noticed since your symptoms escalated.
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Consider Bringing Support: If possible, bring someone with you who can help communicate your health concerns. They can assist in advocating for you in a healthcare setting.
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Follow Medical Advice on IV Therapy and Hydration: If the IV is provided, monitor any changes in your symptoms closely. If you do not notice improvement, insist on further evaluation rather than dismissing your feelings. Follow up about how to manage hydration going forward to avoid future concerns.
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Work on Mental Wellness Support: While your focus is rightly on your physical symptoms, consider enlisting a mental health professional in the future to help cope with the anxieties and feelings of shame. You deserve support in both your physical and emotional health.
Remember, your symptoms are not your fault. It’s a courageous step to seek help and prioritize your well-being. You are not alone in this, and professional support can help improve your situation.
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