31F - Mysterious Chronic Illness: Seeking Answers
For several months now, I have been navigating a frustrating journey with my healthcare providers, including my primary care physician and a rheumatologist, in search of answers regarding my declining health. In 2021, I fell ill with an unidentified condition, exacerbated by workplace policies that discouraged COVID testing, leaving me unaware of whether that was the cause. Since that time, my health has never returned to its previous state. A few months after my initial illness, I experienced a significant emotional breakdown that led to severe burnout and ongoing depression, an issue I've been addressing through therapy. Physically, I have noticed drastic changes. Previously, I was able to achieve 40,000 steps a day at my job in the deli without feeling fatigued. Now, my health issues have escalated significantly: - Persistent exhaustion that sleep and caffeine do not alleviate, resulting in frequent naps. - Difficulty remaining seated for more than an hour without feeling the urge to lie down. - Unexplained pain throughout my body. - Joint discomfort that feels like a burning sensation, particularly in colder temperatures. - Rapid heartbeat and dizziness upon standing, causing me to feel faint. - Extreme sensitivity to light and sound, which may relate to my autism and frequently causes me physical discomfort. - Significant cognitive struggles, including brain fog and memory lapses. - Numbness and tingling on my left side, along with sudden jolts in my limbs. - Just ten minutes of light exercise can leave me fatigued and sore for hours or even days. - Frequent headaches on the left side, radiating from my eye through my neck. It's important to note that I do not consume alcohol, smoke, or use recreational drugs. Although I weigh 225 pounds at 5'3", I follow a balanced diet, yet I find it challenging to lose weight. When my health issues arose, I weighed 145 pounds, and despite modifying my diet to include healthier alternatives, I have not seen any progress. My medications include 1mg of Rexulti at night, 40mg of Viibryd, and 150mg of Wellbutrin SR for ADHD, all taken as prescribed. I also have Zyprexa on an as-needed basis but use it sparingly due to increased fatigue. Daily, I take an iron supplement of 75mg since my ferritin levels were notably low. Additionally, I have a copper IUD due to suspected PMDD. Recent lab tests indicated signs of lupus, suggesting a flare-up, and showed a high Westergren sedimentation rate, though I’m unsure of its implications. Throughout this ordeal, my white blood cell count has been consistently elevated, indicating a potential infection that has yet to be identified. My diagnoses include ADHD, Dysthymia, CPTSD, and Autism. My current primary care physician is taking my concerns seriously and has proposed potential explanations, such as fibromyalgia and Ehlers-Danlos syndrome, due to my hypermobility. However, accessing her care frequently is challenging, especially as she plans to leave her practice soon. I seek any insights or suggestions on how to move forward or what to investigate next. Previous doctors have dismissed my concerns by suggesting weight loss as a solution or attributing my issues to my gender, which is frustrating given that I was at a healthy weight when these complications began. Any advice on possible directions for further diagnosis or treatment would be greatly appreciated!
Answers (1)
3/23/2025, 2:20:45 AM
OpenHealth AI
Thank you for sharing your detailed experience. It’s clear you’ve been through a challenging journey with numerous symptoms affecting both your physical and mental health. Your current situation warrants thorough exploration, particularly considering the indications of lupus and other possible conditions like fibromyalgia and Ehlers-Danlos syndrome.
Main Points:
- Symptoms Analysis: Your symptoms suggest possible underlying conditions that require targeted investigation.
- Action Steps: Focusing on symptom tracking, lifestyle adjustments, and strategic follow-up with healthcare professionals can help guide your next steps.
Explanation:
The combination of persistent fatigue, joint pain, cognitive issues, and other systemic symptoms could indicate several conditions, including autoimmune diseases. Given your low ferritin levels, recent lab findings suggesting lupus, and elevated sedimentation rate, it’s essential to differentiate between these conditions, especially since they can intersect in terms of symptoms.
Your mental health issues and past trauma might also complicate your current physical health, further impacting your overall well-being. Addressing both physical and mental health holistically can improve your situation.
Next Steps:
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Symptom Tracking:
- Start maintaining a detailed symptom diary. Note the frequency, duration, and triggers for each symptom. This includes energy levels, pain times, and cognitive clarity. This information can be incredibly helpful for your healthcare providers in making further assessments.
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Follow-Up with Your Primary Care Physician:
- Schedule an appointment to discuss your symptoms and lab results in depth, especially considering the potential for an autoimmune condition. Inform her about your persistent symptoms and concerns regarding lupus, fibromyalgia, and Ehlers-Danlos syndrome.
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Physical Activity:
- Given your fatigue and sensitivity, consider gentle activities like stretching or chair yoga, gradually increasing your endurance while being mindful of your limits. Addressing physical health with suitable activity can help you gauge what exacerbates your symptoms.
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Diet and Nutrition:
- Consult with a registered dietitian, focusing on your current eating habits and nutritional needs, considering your iron supplementation and how it relates to energy levels. A balanced plan may help support your overall health, and they can suggest strategies for weight management that respect your metabolism and current state.
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Pain Management Techniques:
- Explore methods such as mindfulness, relaxation techniques, or heat therapy for alleviating joint and muscle discomfort. Gentle massage or physical therapy might also be beneficial, which you can discuss with your doctor.
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Mental Health Support:
- Continue working with your therapist. Given your complex medical history, they can provide coping strategies for managing anxiety around your health concerns and symptoms.
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Community Support:
- Engage with support groups for individuals experiencing similar chronic conditions. Sharing experiences and receiving support can provide practical advice and emotional relief.
As your healthcare journey progresses, it’s important to remain persistent in seeking answers and advocating for your health. It’s okay to push back when you feel your concerns aren't being fully explored. You're not alone in this, and with the right support and interventions, improvement in your quality of life is possible.
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