OpenHealth Q&A

Seeking Answers: My Life Feels Empty and Unbearable

I am a 32-year-old White British woman, 164 cm in height and weighing 175 lbs. Currently, I take a daily dose of 2000 IU Vitamin D3 and receive Vitamin B12 injections every twelve weeks at my doctor’s office, due to a deficiency identified through blood tests. For clarity, I do not have coeliac disease, and these injections are my only form of medication. As I share my situation, I apologize in advance for any incoherence. I aim to provide comprehensive details, though I'm unsure which specifics are relevant, so please feel free to ask if you need more information. The past decade has been profoundly challenging for me, diminishing my quality of life significantly. Over the last ten years, I've encountered a range of symptoms that have gradually caused me great distress. The predominant issues include: - **Dizziness:** This varies in intensity, often making me feel as though I’m swaying while the world remains still. Sitting comfortably, especially with my legs elevated, provides some relief. Standing can be disorienting, as I find I must lean to maintain balance. - **Vision Problems:** My eyes struggle to focus, particularly in visually stimulating environments such as supermarkets or dense woods. I experience visual disturbances like spotting while driving, especially when sunlight flickers through trees, leading to nausea and dizziness; I sometimes have to close my eyes, as the sensation persists even then. - **Fatigue:** Despite getting a full night’s sleep (8+ hours), I often find myself extremely tired just a few hours after waking, requiring daytime naps to cope. - **Joint and Body Pain:** I suffer from pain in my joints, particularly in my ankles when walking and in my hands when performing tasks, such as preparing food. It starts as numbness and escalates to significant discomfort, alleviating somewhat after rest. - **Unexplained Pain:** I've noticed a peculiar pain when I scratch itches; it manifests as a deep throbbing or soreness in the bones beneath the area I’ve scratched, occurring frequently enough to be concerning. - **Migraine Symptoms:** I experience aura related to migraines or ocular migraines, often without accompanying headaches. The visual disruptions can last from one to twenty minutes, featuring flashes or blind spots. - **Neurological Symptoms:** Occasionally, I feel sudden jolts in my brain, accompanied by dizziness and ringing in my ears, often prompting me to sit down. These 'zaps' occur multiple times a week. - **Tingling Sensations:** I experience pins and needles in my legs and feet intermittently. - **Cognitive Issues:** I often grapple with brain fog, making it difficult to concentrate, and I deal with frequent scalp soreness, reminiscent of pain from a tight ponytail, but occurring without any hair styling triggering it. It is usually accompanied by increased dizziness. - **Temperature Regulation:** I have significant difficulties in managing body temperatures, cycling between feeling excessively hot and uncomfortably cold. When I get cold, it takes an extended period to warm up again, marked by shivering and being cold to the touch. - **Internal Jitters:** I also experience a trembly sensation within my body, the nature of which is hard to define. Additional notes that might be relevant: I become exceedingly tired after eating, regardless of the meal size, and I have always had sensitivity to bright lights, which leaves a lingering imprint in my vision. Furthermore, I have experienced floaters since I was 20, although my body adjusts to them over time. In 2019, I was diagnosed with tachycardia, but the doctors did not provide extensive follow-up on it. I fainted once, and at that time, paramedics briefly mentioned POTS but deemed me too old for that diagnosis. I also have symptoms of Irritable Bowel Syndrome, though its flare-ups do not correlate directly with my other symptoms. My skin has a reddish hue on my face and faint mottled areas on my body. In recent years, medical professionals have conducted blood tests that returned normal results concerning diabetes and inflammatory markers and ruled out arthritis. Although they have not pursued further testing, the optician indicated that my vision is fine. A referral for an ophthalmologist has been initiated, yet they do not expect any additional findings. My symptoms began intensifying approximately 11 years ago, marked by a sudden onset of dizziness, weakness, visual disturbances, and a debilitating fatigue that kept me bedridden for about a month. Extensive medical evaluations, including two ENT visits and an MRI, returned no conclusive findings. The enduring dizziness, which fluctuates in severity, has been a constant challenge. I find myself feeling hopeless, lamenting the life I once had. I used to be active, social, and engaged in various activities; now, even simple tasks feel overwhelming, and I fear that my concerns are not being taken seriously. As a patient in the UK's NHS system, I occasionally feel the need to advocate vigorously for tests or referrals, which seems unfair given my plight. So here I am, reaching out to the Reddit community in desperation. Do any of my symptoms resonate with you? Are there particular areas I should investigate further or specific tests I ought to request? I would sincerely appreciate any insights you might share. Thank you deeply for your attention, and do not hesitate to ask if you require additional details.

Answers (1)

2/2/2026, 5:31:01 PM

OpenHealth AI

I'm truly sorry to hear about the difficulties you’re facing. It sounds like you’re experiencing a range of distressing symptoms that have taken a toll on your overall well-being. Many of the symptoms you've described could relate to several interlinked conditions, possibly involving neurological, autoimmune, or other systemic issues. It’s essential to feel heard and understood, so I appreciate you sharing your situation.

Main Points:

1. Symptom Overlap: Some of your symptoms may indicate conditions like dysautonomia, fibromyalgia, or chronic fatigue syndrome, but it’s crucial to pursue a thorough evaluation to rule out other potential causes.
2. Advocacy for Healthcare: You may need to be persistent in advocating for further tests and referrals to ensure a thorough investigation of your symptoms.
3. Self-Care & Support: While navigating this, focusing on self-care strategies can help manage symptoms and improve quality of life.

Explanation:

Your symptoms, such as dizziness, fatigue, joint and body pain, and neurological disruptions, can be challenging to trace back to a single cause. Conditions like fibromyalgia can present similarly, with widespread pain and fatigue, while symptoms like dizziness and temperature regulation issues may suggest autonomic nervous system involvement, potentially related to POTS (Postural Orthostatic Tachycardia Syndrome) or other related syndromes. Given your history of tachycardia and fainting, pushing for further evaluation by a specialist (such as a neurologist or rheumatologist) may be worthwhile.

Next Steps:

1. Document Your Symptoms: Keep a detailed symptom diary for a few weeks. Note when symptoms occur, their severity, any potential triggers, and how long they last. This will help healthcare providers understand your condition better.

2. Request Comprehensive Testing: Based on your symptoms and past medical history, consider asking about:

   • Tilt table test or active stand test for POTS.
   • Autonomic function tests.
   • Complete blood tests encompassing thyroid function, inflammatory markers, and other relevant panels. Given your fatigue and joint pain, autoimmune markers might also be informative.

3. Advocate for a Multidisciplinary Approach: Given the various symptoms, a team approach involving specialists in neurology, rheumatology, and possibly internal medicine is recommended. Assertively communicating that your symptoms impact your daily life significantly may lead to more investigations.

4. Engagement in Supportive Communities: Finding support groups, either online or locally, for individuals experiencing similar conditions can provide comfort and shared experiences. This connection can help reduce feelings of isolation.

5. Stress Management Techniques: Consider gentle physical activities like yoga or Tai Chi, which may help alleviate joint and muscle pain. Mindfulness or meditation can also help reduce anxiety and improve coping strategies.

Final Thoughts:

Remember, it’s essential to be persistent and proactive in seeking the care and attention you need. You are not alone in feeling overwhelmed, and it’s okay to ask for help and support from medical professionals and your community. Your wellbeing matters, and advocating for your health is a crucial part of your journey. Please feel free to share any updates or further information as you navigate this.