Concerns About Autoimmune Disorders
Age: 21 Gender: Female - Currently weighs 78 kg, down from 127 kg four years ago. Residing in England. **Medications:** daily intake of Venlafaxine (150 mg), Elvanse (50 mg), and Lactulose (15 ml). **Medical History:** During childhood, I experienced episodes of bronchitis, outgrew asthma, was diagnosed with Bartonella neuroretinitis, had a heart murmur (which is no longer a concern), and have Ehlers-Danlos Syndrome (Type 3). As an adult, my diagnosis includes ADHD and Mixed Anxiety Depressive Disorder, along with EDS. **Recent Medical Evaluations:** I underwent tests for Inflammatory Bowel Disease (IBD), during which an abdominal MRI revealed gallstones. A colonoscopy led to the removal of a polyp, with biopsy results pending. Notably, there was no sign of inflammation observed. **Family Health Background:** On my maternal side, there's a history laden with uncommon autoimmune conditions and various health complications. While I can't list all the conditions, one notable case is my great grandmother, who had polymyositis. **Current Symptoms:** For the past year and a half, I have been grappling with persistent issues that appear to be intensifying, and I find myself experiencing new symptoms. Despite my efforts to seek help from medical professionals and express my concerns, I feel undervalued in my complaints. A private consultation recently suggested I simply eat more, which led me to focus on healthier food choices and gym attendance, but I haven't noticed any improvement. - **Facial Rash:** Persistent clusters of hives typically located on my cheeks, near my nose, and occasionally spreading to my forehead and chin. Showers often trigger rashes on my knees, feet, and hands as well. - **Muscle and Joint Pain & Fatigue:** I experience intense fatigue, at times sleeping as long as 20 hours a day. - **Blood Pressure Concerns:** Frequently low readings, with 96/61 being one of my latest. - **Blood Test Results:** Typically show low ferritin levels alongside normal hemoglobin. - **Balance Issues:** Periods of feeling faint and losing my vision when standing. My mother suspects POTS (Postural Orthostatic Tachycardia Syndrome) due to family history, as my heart rate spikes from 82 to 130 bpm with just a change in position. - **Constipation:** Can go up to two weeks without a bowel movement despite taking fiber supplements and consuming 2 liters of water daily. - **Cold Extremities:** My hands and feet are perpetually cold, often associated with numbness and tingling sensations. - **Fatigue:** Difficulty standing for extended periods due to a sense of overwhelming heaviness. - **Headaches, changes in appetite, mood fluctuations, abdominal pain, and frequent illnesses** (especially challenging as I work in a hospital). This ongoing struggle has jeopardized my job security, and my overall quality of life has reached a concerning low. I'm reaching out in hopes of any insights or advice regarding my situation, especially considering my family's medical background. Thank you in advance for your thoughts.
Answers (1)
3/29/2025, 2:10:41 AM
OpenHealth AI
You are facing a complex set of symptoms and health history, which understandably raises concerns about autoimmune disorders and your overall quality of life. Given your persistent symptoms and family history, it's crucial to stay proactive in managing your health.
Explanation
Your symptoms, including persistent rashes, joint pain, fatigue, and blood pressure issues, could be related to an underlying autoimmune condition or other chronic illness, especially considering your family background. Conditions like Ehlers-Danlos Syndrome can complicate diagnosis as they can overlap with symptoms of other disorders. Your reported symptoms of hives, fatigue, low blood pressure, and neurological issues (like balance problems and vision changes) warrant careful monitoring.
Next Steps
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Document Your Symptoms: Maintain a detailed diary of your symptoms, noting when they occur, their severity, and any triggers (such as stress, food, or physical activity). This will help you identify patterns and provide accurate information to future healthcare providers.
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Focus on Nutrition and Hydration: Although you've been advised to eat more, focus on a balanced diet that includes plenty of whole foods—fruits, vegetables, whole grains, lean proteins, and healthy fats. Consider working with a registered dietitian who understands complex health issues to develop a personalized meal plan.
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Exercise Considerations: While incorporating physical activity is beneficial, tailor your exercise to match your current energy levels. Gentle activities like walking or yoga can be effective without overwhelming your body.
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Monitor Blood Pressure: Keep a daily log of your blood pressure readings, especially when standing up. Sharing this information with your healthcare provider can help address potential Postural Orthostatic Tachycardia Syndrome (POTS) and guide treatment options.
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Consult a Specialist: Seek a referral to a rheumatologist. Given your family history and symptoms, they can conduct specific tests for autoimmune disorders, such as lupus or others that could match your profile.
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Address Mental Health Concerns: The stress of these ongoing health issues can exacerbate symptoms. Engage with a mental health professional who can help you develop coping strategies and emotional support.
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Discuss Medication Review: Given your current medications, it may be worth discussing with your healthcare provider whether any of your medications could be contributing to your symptoms or if adjustments are necessary, especially related to energy levels and mood.
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Explore Alternative Therapies: Some patients find benefit from therapies such as acupuncture, which can help manage pain and fatigue. Always consult with your medical provider before starting new therapies.
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Follow Up on Pending Results: Keep track of the results from your recent colonoscopy and MRI, and ensure that you have a follow-up appointment to discuss any findings with your healthcare provider.
Empathy & Reassurance
It's clear you're feeling overwhelmed by your symptoms and the lack of effective communication in the healthcare system. Your concerns are valid, and advocating for your health is crucial. Remember, you are not alone in this journey, and finding the right support and medical professionals will be key to improving your situation. Please don't hesitate to ask for further assistance as you navigate through this challenging time.
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