Struggling with Chronic Illness and Seeking Answers
Summary: I've been unwell since 2022 after being prescribed an inappropriate dosage of metformin, leading to persistent vomiting, severe stomach pain, and overwhelming fatigue. Despite significant weight loss and a limited diet, medical professionals seem stumped, attributing my symptoms to either a stomach virus or acid reflux without effective remedies. I desperately need guidance. Diagnosis: - Polycystic Ovary Syndrome (PCOS): Currently not undergoing treatment (I had an IUD inserted approximately three months ago, but it was removed because it shifted, causing immense back discomfort). Medications: - Voquezna: Medications for acid reflux—these have not been beneficial. - Zofran: I've been using this for the last month as needed (only received a sample, provides minimal relief). Additional Information: - I weigh around 200 lbs at a height of 5 feet 9 inches, assigned female at birth. - Daily cannabis user (though I've paused this for about a week). - Regular vaping (attempting to quit; I suspect it’s not the primary cause since it began two years after my health decline, but it could be a factor). Since September 2022, I (21F) have been battling chronic illness, with the onset coinciding with a metformin prescription for my PCOS (though I'm unsure if this is the cause). Initially, my digestive health took a nosedive while on metformin; symptoms were more severe than anticipated. During a follow-up with another gynecologist (the first was a trainee), I learned that the dosage was excessively high. Though it was reduced, symptoms remained unrelenting, leading to discontinuation of the medication. It's worth noting I had no prior digestive troubles, and any occasional bouts of sickness in the past were easily rectified with antacids. In the early days, my symptoms presented infrequently, manifesting as bouts of severe nausea along with minor symptoms like mild abdominal discomfort and loose stools. I must admit, I didn’t pay it the serious attention it deserved, but the situation has escalated to an unmanageable extent. Over the last year, my condition has deteriorated significantly. I’ve consulted with four healthcare providers, including three visits to my primary care physician and one trip to the ER. Initially, my primary care doctor (still somewhat convinced I’m suffering from acid reflux) examined me superficially, performing no tests or thorough examinations. Her assessment seemed to stem from the fact that my symptoms tend to be most intense in the mornings. During that visit in early 2024 (as my issues intensified), I was prescribed acid reflux medication that failed to alleviate my symptoms. By September 2024, as my condition worsened further, my doctor neglected to provide any new prescriptions, merely advising me to monitor my diet. In February 2025, I found myself in the ER due to excruciating pain. The staff diagnosed me with the flu and sent me home with Zofran and painkillers, again without conducting any tests. This series of events really began to chip away at my hope. At my appointment in March 2025, I shared an alarming realization: I had lost over 35 pounds since my last visit. While this may not seem significant to some, I struggle to lose weight, making this situation alarming. Eventually, my doctor acted more seriously, performing a quick physical examination and referring me to a specialist. Despite insisting that I never mentioned the connection to metformin or the continuous nature of my symptoms, she prescribed a new acid reflux medication (Voquezna) designed to lower stomach acid levels. Though I did notice some improvement as I haven't been throwing up as violently upon waking, I still experience significant dry heaving from abdominal discomfort. (For context, I understand that the time between these medical appointments has been lengthy. I struggle with agoraphobia, making it incredibly challenging for me to leave home. Despite enduring this pain, I convinced myself I was able to cope, which I now recognize was misguided.) The most distressing part of this ordeal is the relentless pain I feel throughout the day. I wake up and immediately endure bouts of vomiting (now more often dry heaves). Previously, throwing up would provide some relief, but that is no longer the case. Fatigue has become my constant companion, making it difficult to eat, even though I’ve always had a passion for food. It's alarming how I now find meals I once cherished to be revolting. My sleeping patterns have become excessive, likely due to inadequate nutrition and constant discomfort demanding me to change positions frequently. I experience dizziness simply from standing, almost leading to fainting spells multiple times. Thankfully, I haven't collapsed yet, but I frequently see spots and darkness when I stand. The severity of my vomiting has escalated to the point where even swallowing saliva aggravates my stomach. I now have to wait hours after waking before I can even sip water without immediately being sick. I'm feeling utterly overwhelmed and uncertain about the future. Everything in my life has been impacted: I am unable to work, pursue hobbies, or maintain relationships. My days typically revolve around the couch, where I fear even moving too suddenly may trigger another episode of vomiting. With limited options, I’m surviving on nutrition shakes and soup. Moreover, my dental health is suffering due to the frequent acid exposure. I’m fortunate to have supportive parents who are helping me financially, but I refuse to accept this as my new normal. I miss my friends and find that my overwhelming fatigue keeps me from connecting with them. There’s a growing fear that I may not survive this ordeal because my concerns are not being heard. Whether it’s linked to the metformin or not, I urgently need clarity and answers, which might come at my August 26th specialist appointment—the earliest I could be seen. I’m actively searching for a new physician but wanted to reach out here for advice on what steps I can take in the meantime. I feel completely lost and unsure of my next move.
Answers (1)
4/1/2025, 12:50:58 AM
OpenHealth AI
I'm really sorry to hear about the challenges you've been facing with your health. It sounds incredibly tough, and navigating this situation can be overwhelming. Let's break down your concerns and come up with some actionable steps you can take while you prepare for your upcoming specialist appointment.
Main Points
You are experiencing severe gastrointestinal symptoms, fatigue, and significant weight loss, which seem to be affecting your quality of life significantly. Your current medications are not providing the relief you need, and doctors have not yet identified a clear cause. You're feeling overwhelmed and are seeking immediate guidance.
Explanation
From what you describe, it appears that your symptoms may be complex and have potentially multifactorial causes. Given your history with metformin, gastrointestinal issues, and your experience with healthcare, it’s crucial to explore all possible underlying conditions—such as disorders related to PCOS, potential food intolerances, or even effects from previous medications.
Actionable Steps
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Maintain a Detailed Symptom Diary:
- Document daily symptoms, including when they occur, intensity, and any patterns you notice (e.g., relation to food, time of day).
- Note down any triggers that exacerbate your symptoms, such as specific foods or activities.
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Focus on Nutrition:
- Since you mentioned relying on nutritional shakes and soup, continue with those but try to ensure they are well-balanced. Consider adding pureed fruits or vegetables if possible to enhance nutrients.
- Avoid foods that tend to irritate your stomach, such as spicy, acidic, or greasy foods. Observe if certain foods trigger vomiting and aim to avoid them.
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Hydrate Mindfully:
- Stay hydrated, but do so in moderation. Small sips of water every 10-15 minutes may help reduce the likelihood of nausea but ensure you're not taking too much at once.
- If water seems to trigger nausea, consider ice chips or electrolyte solutions, which might be gentler on your stomach.
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Explore Relaxation Techniques:
- Stress and anxiety could be exacerbating your symptoms. Techniques such as deep breathing, meditation, or gentle stretching may help manage nausea and promote relaxation.
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Communicate Your Experience Clearly:
- Prepare your notes for your upcoming specialist appointment. Outline your symptom history, medication timeline (especially the issues with metformin), and any changes you've noticed. This concise record can help the specialist understand your situation better.
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Prioritize Care for Dental Health:
- Since you mentioned dental issues due to acid exposure, consider using toothpaste for sensitive teeth and rinsing your mouth with water or a mild baking soda solution after vomiting to neutralize acid.
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Social Connections:
- Reach out to friends virtually or have brief phone check-ins to help maintain your social connections. Express your feelings; this can alleviate some emotional burdens and make isolation more manageable.
Next Steps
Continue monitoring your symptoms and gather data to share with your specialist. Prioritize your mental and emotional well-being as you navigate this. I understand how difficult it can be to remain hopeful, but you're taking proactive steps, and that's commendable. If you have specific areas you'd like to explore further, let me know.
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