Ongoing Illness Since March: Seeking Answers
I’m a 28-year-old female, weighing 198 pounds and standing 5’6”. I have been prescribed 150mg of Effexor each day, take 20mg of Nexium regularly, and occasionally use melatonin. Firstly, I apologize for the length of this post, but there’s a considerable amount to update. I appreciate anyone in the medical field who takes the time to read this. In early March, I experienced a sudden onset of excruciating back and abdominal pain that woke me from my sleep. Initially, I assumed it was due to an awkward sleeping position, but the discomfort persisted. A few days later, I noticed swelling in the lymph nodes located behind my right ear, and shortly thereafter, a significant rash developed on both arms, which was swollen, hot to the touch, but not itchy or bumpy—it resembled a sunburn despite no sun exposure. Concerned about the rash, I went to the hospital. After conducting blood tests and a CT scan, no definitive issues were discovered. They prescribed steroids that alleviated the rash and provided relief from the back pain, which I found surprisingly effective. A few weeks into my ordeal, I tried adopting a gluten-free diet. Though it initially improved my rash, it returned despite my adherence to the diet. I also experimented with an anti-inflammatory diet and a low FODMAP diet, but the benefits were fleeting. I sought consultations with multiple doctors and underwent various tests, including a CBC, ANA panel, thyroid panel, and an allergy panel. Results indicated low levels of Vitamin D and iron, along with a positive ANA result. The allergy and thyroid panels were within normal ranges, and I began taking supplements for the deficiencies. The antinuclear antibodies test came back positive, showing a speckled pattern with a quite significant result of 1:160. Additionally, my anticardiolipin antibodies tested high at 44. In June, I had a follow-up with a rheumatologist who prescribed Celebrex and a muscle relaxant. Unfortunately, I had adverse reactions to both; the Celebrex caused fever, chills, and increased bloating, while cyclobenzaprine blurred my vision. After three consultations, during which only an X-ray was conducted, the doctor concluded that I did not have an autoimmune condition and felt I no longer required his services. Since then, I have experienced an escalation of symptoms, including debilitating bloating, fatigue after eating even liquid-only diets, hip pain, tenderness in my right hip and spinal discomfort, mucus and blood in my stools, persistent constipation despite soft stools, and painful diarrhea when it does occur. I’ve also experienced unintended weight loss, weakness, and shortness of breath. These symptoms tend to come in waves; on some days, I can manage to feel somewhat normal, but I often spend at least three to four days a week feeling utterly exhausted and unwell. More recently, these episodes have become increasingly unpredictable and frequent. Even a clear liquid diet now triggers discomfort, malaise, and severe fatigue, while solid foods appear to exacerbate the rash. I recently consulted a gastrointestinal specialist who suggested starting with Miralax for my constipation and planning further steps during my next visit next month. I left that appointment feeling devastated and in tears. This ongoing struggle has been incredibly difficult, and I am apprehensive about enduring another month like this. I seek insights from medical professionals regarding potential diagnoses or directions I should pursue to finally obtain some answers. I’m feeling quite defeated and appreciate any guidance. Thank you for your help.
Answers (1)
8/29/2025, 2:13:57 PM
OpenHealth AI
I understand that you are going through a very challenging time with your health, and it’s commendable that you are actively seeking answers. Based on your detailed symptoms and medical history, it’s clear that there is a complex interaction of factors at play. Let's break this down and discuss some potential next steps and considerations.
Main Points
- You have experienced a range of symptoms, including pain, rash, gastrointestinal issues, and fatigue, which have not been adequately resolved despite multiple consultations.
- You have positive ANA and anticardiolipin antibody results, which merit further exploration, particularly concerning autoimmune conditions.
- Your recent gastrointestinal issues, including blood and mucus in stools and significant bloating, need to be prioritized.
Explanation
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Autoimmune Disorders: The positive ANA test can indicate various autoimmune conditions, such as lupus or antiphospholipid syndrome. These conditions can present with diverse symptoms, including rashes, joint pain, and gastrointestinal issues. Given your symptoms and blood work, further evaluation by a rheumatologist focusing on these conditions might be warranted.
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Gastrointestinal Health: Since you are experiencing gastrointestinal symptoms, such as constipation and changes in bowel habits, it's vital to address these. The blood and mucus in your stools are concerning and should be evaluated thoroughly to rule out any serious conditions, such as inflammatory bowel disease (IBD).
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Nutritional Deficiencies: Your low Vitamin D and iron levels may contribute to fatigue and overall malaise. Continuing your supplements is essential, but also ensure they are appropriately combined for absorption (iron with Vitamin C, avoiding calcium at the same time).
Next Steps
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Follow Up with Gastroenterologist: Since you have already had an appointment with a gastrointestinal specialist who prescribed Miralax, keep a diary of your symptoms and any food triggers. Clearly document any worsening of your symptoms, especially concerning blood and mucus in your stools.
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Request Additional Tests: During your next appointment, consider requesting:
- Stool tests: To check for infections, inflammatory markers, and other gastrointestinal issues.
- Endoscopy or colonoscopy: If warranted, these can help visualize the gastrointestinal tract and obtain biopsies if necessary.
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Explore Rheumatology Options: If you feel comfortable, seek a second opinion from another rheumatologist who can provide a fresh diagnostic approach, particularly focused on your positive ANA and ongoing symptoms.
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Symptom Management: Continue to monitor your diet and keep track of what triggers your symptoms. Consider sticking to a bland diet temporarily until you can see your GI specialist, focusing on easily digestible foods that do not aggravate your symptoms.
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Support and Resources: Seek support through online forums or local groups for individuals experiencing similar health issues. Sometimes sharing experiences can provide emotional relief and insights into managing symptoms.
Final Thoughts
I empathize with how overwhelming this situation must feel. Your health concerns are valid, and seeking clarity through thorough investigation is crucial. Please keep advocating for your health, and reach out for emotional support as needed during this difficult time. You deserve to find answers and relief.
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