Possible Autoimmune Condition: Seeking Insights
Age: 21, currently weighing 78 kg (originally weighed 127 kg four years prior). Location: England. **Medications:** I am currently taking Venlafaxine (150 mg), Elvanse (50 mg), and Lactulose (15 ml) on a daily basis. **Medical History:** In my childhood, I experienced an episode of bronchitis, asthma (which I eventually outgrew), Bartonellaneuroretinitis, and had a heart murmur (currently resolved). I have also been diagnosed with Ehlers-Danlos syndrome, specifically Type 3. As an adult, I am managing ADHD and Mixed Anxiety Depressive Disorder alongside my EDS. **Recent Investigations for IBD:** - An abdominal MRI revealed the presence of gallstones. - A colonoscopy led to the removal of a polyp, and I am currently awaiting the biopsy results. Thankfully, no signs of inflammation were noted. **Family Medical Background:** The medical history on my maternal side is notably marked by rare autoimmune conditions and various health concerns. While I may not know all the specific medical terminologies, I am aware that my great-grandmother had polymyositis. **Current Health Challenges:** For the past 18 months, I have been grappling with persistent symptoms, which seem to worsen over time, adding to my growing list of concerns. Despite my persistence in seeking medical attention, I feel as though my complaints are not being fully acknowledged. A recent consultation at a private hospital resulted in the advice to increase my food intake, which I have tried to comply with by maintaining a healthy diet and exercising at the gym; however, there has been no noticeable benefit. Here are some specific issues I am facing: - **Facial rash:** This appears predominantly on my cheeks near the nose, and occasionally on my forehead and chin, resembling hives. Showers often trigger additional rashes on my knees, hands, and feet. - **Muscle and joint pain** coupled with extreme fatigue, at times sleeping up to 20 hours. - I frequently experience low blood pressure; a recent reading was 96/61. - Blood tests consistently show low ferritin levels, even while hemoglobin levels remain normal. - I experience balance issues and intermittent faintness, losing vision upon standing. My mother suspects I might have POTS, as it is prevalent in our family, given my heart rate can spike from 82 to 130 bpm simply by standing. - **Severe constipation** can lead to two weeks without a bowel movement despite fiber supplementation and a steady intake of 2 liters of water daily. - My hands and feet often feel cold, accompanied by frequent numbness and tingling. - I struggle to stand for long periods as my body feels excessively heavy. - Persistent headaches and an overall feeling of weakness. - A diminished appetite and fluctuating mood swings. - Abdominal pain and a tendency to catch illnesses often (though I work in a hospital environment). - I experience cycles where I feel unwell for prolonged periods, followed by intervals where symptoms are more manageable, only to revert to being nearly housebound. This list could extend much further, but I’ll refrain for now. I am reaching out to see if anyone has insights into what might be affecting my health, especially considering my family’s medical history. The frequency of my illnesses puts my job at risk, having worked full-time with unsuccessful attempts to shift to part-time or adjust my hours without relief. Socially, I have lost many friends because of my inability to participate in activities, and my relationship has also suffered due to my frequent sickness. I am in dire need of assistance and guidance, as my current quality of life is considerably diminished. Thank you for any input you may have.
Answers (1)
3/30/2025, 6:40:47 PM
OpenHealth AI
It sounds like you are facing a range of complex and challenging health issues, and I want to acknowledge how difficult this has been for you. Your symptoms and history suggest a possible autoimmune condition, particularly given your family's medical background and your existing diagnosis of Ehlers-Danlos syndrome (EDS). Here’s a structured way to understand your situation and some suggested steps you can take.
Main Points:
- You have a combination of symptoms that may suggest an autoimmune disorder, particularly with your family history.
- Persistent symptoms that include fatigue, rash, muscle pain, and issues like low blood pressure and constipation need careful management.
- Maintaining a proactive approach to monitoring your symptoms and gaining appropriate medical attention is crucial.
Explanation:
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Symptoms: The rash, muscle pain, fatigue, and episodes of faintness with low blood pressure are concerning and could relate to several conditions, including postural orthostatic tachycardia syndrome (POTS), which you mentioned is suspected in your family. Additionally, continuous low ferritin levels despite normal hemoglobin can suggest issues with iron absorption or chronic inflammation.
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Autoimmune Connection: Your family's history of autoimmune diseases and your symptoms point towards the possibility of an autoimmune condition. Conditions like lupus or various types of arthritis could potentially manifest with the symptoms you're experiencing.
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Quality of Life: It’s understandable how these health issues can severely impact your day-to-day activities, social life, and mental health. Seeking validated medical advice and support is critical in improving your quality of life.
Next Steps:
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Symptom Tracking: Keep a detailed journal of your symptoms, including the timing, severity, and any possible triggers (like food, stress, or weather changes). This can be valuable information for your healthcare providers.
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Professional Follow-Up: Given the complexity of your case, it's important to consult with a specialist who focuses on autoimmune diseases or connective tissue disorders. Ensure your concerns are being voiced.
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Blood Pressure and Blood Work: Continue monitoring your blood pressure regularly, especially upon standing. Inform your next doctor about these episodes, as they may want to investigate POTS further with specialized tests.
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Diet and Hydration: Since you experience severe constipation, consider working with a nutritionist who can tailor an approach based on your symptoms and lifestyle. Increasing your salt intake might help with blood pressure, but ensure any changes are discussed with a healthcare provider.
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Mental Health Support: Managing a chronic condition can take a toll on mental health. Continue to seek support for your mental health challenges, as they are just as important as physical health. Consider speaking to a therapist who has experience dealing with chronic illness.
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Join a Support Group: Connecting with others who have similar experiences can provide emotional support and practical advice.
I hope these suggestions help you find clarity and relief moving forward. Remember that you are not alone in this, and it's okay to seek multiple opinions until you find the care that works for you. If you have any further questions or need more specific guidance, feel free to ask.
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