Unidentified Illness – Seeking Solutions as Doctor Struggles
I’m a 32-year-old female experiencing a series of baffling health problems that my general practitioner has been unable to diagnose. Over the past six weeks, I've experienced three distinct "flare-ups," each progressively worsening. Presenting symptoms include intense body pain, extreme fatigue, pronounced weakness, chills, and night sweats—though the sweats do not occur every night. Additionally, I've faced heart palpitations, but I have not experienced fever, localized pain, cuts, or rashes. My gastrointestinal system is mostly functioning well with just a general sense of nausea and no pain during urination. My bowel movements are regular, and there’s been no blood in my stool or any conspicuous lumps on my body. I’ve also had no recent exposure to mosquitoes or ticks and have not left Brisbane in the last four months, nor have I traveled abroad. The onset of the first flare was unexpected, beginning on May 21 and lasting until May 27. The second flare initiated on June 11 and continued until June 24, with symptoms that were notably worse than the first. The third flare began on June 30 and is still ongoing as of July 2, but this instance hit me much harder and more suddenly; I genuinely feel like I’m at my breaking point. During the first flare, no tests were conducted, and my doctor attributed it to a viral infection. For the second flare, a series of tests were performed, including a full blood count (FBC), C-reactive protein (CRP), erythrocyte sedimentation rate (ESR), HIV, liver and electrolyte function tests (E/LFT), and tests for Epstein-Barr virus (EBV) and cytomegalovirus (CMV). The results showed a CRP level of 52, ESR of 29, white blood cell count (WBC) at 13.9, neutrophils at 80% with a level of 11.1, and a hemoglobin count of 112. All other test results were within normal ranges. A chest X-ray and an ultrasound of my neck's lymph nodes also returned normal results. Despite a thorough autoimmune panel—including tests for ANA, ENA, HLA-B27, C-ANCA, P-ANCA, Anti-CCP antibodies, lactate dehydrogenase (LD), and creatine kinase (CK)—all results were deemed normal; this testing was influenced by my mother’s history of rheumatoid arthritis. Today, I underwent repeat blood tests (excluding the autoimmune panel), which included additional assessments for BFV antibodies, RRV antibodies, U-MCS, blood cultures, malarial parasites, magnesium, thyroid function tests (TFT), and iron studies. Furthermore, I've been referred for a crucial pan-scan, which entails a CT scan of my chest, abdomen, and pelvis using contrast material. My doctor mentioned that if the pan-scan yields normal results, he would refer me to a hematologist, unless any of the viral assay tests indicate positive results (such as Ross River virus). Does anyone have insights? Are there other tests that I should consider requesting? Background: I have a medical history that includes hypermobile Ehlers-Danlos Syndrome (hEDS), polycystic ovary syndrome (PCOS), pelvic congestion syndrome, and thyroiditis, which was detected via ultrasound in May although blood tests returned normal values.
Answers (1)
7/2/2025, 5:10:50 AM
OpenHealth AI
Main Points: It sounds like you're dealing with a complex set of symptoms that have not yet been clearly diagnosed. Your recent tests and upcoming scans will be critical in understanding your situation better. Here are some steps to consider moving forward.
Explanation: You've been experiencing significant symptoms including intense body pain, fatigue, chills, and heart palpitations without clear answers from previous tests. This uncertainty can be very frustrating, especially when your body feels like it's not functioning normally. Testing has shown inflammation markers, but nothing definitive has come back yet. The fact that you have a history of health issues like hypermobile Ehlers-Danlos Syndrome, PCOS, and thyroiditis complicates the picture, but these may also be influencing your symptoms.
It’s positive that your doctor has performed a range of tests already and is considering further assessments with the pan-scan. This will help rule out many potential underlying causes.
Next Steps:
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Stay Informed: Once you receive results from the pan-scan, take time to discuss them thoroughly with your doctor. Understanding what's normal vs. abnormal can help guide further steps.
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Monitor Your Symptoms: Keep a detailed log of your flare-ups, noting triggers, symptom severity, and duration. This information can be valuable in identifying patterns or links to specific conditions.
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Consider Additional Factors: Discuss with your doctor the possibility of chronic fatigue syndrome or fibromyalgia, especially since your symptoms include fatigue and widespread pain. Observing your response to treatments for these conditions could be informative.
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Nutrition and Hydration: Focus on a balanced diet rich in whole foods, vegetables, fruits, and adequate hydration, which might help support your body during these flare-ups.
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Supportive Therapies: Gentle exercises such as yoga or swimming may help manage pain and improve overall well-being, particularly with your existing conditions like hEDS.
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Rest and Self-Care: Make sure to rest adequately during flare-ups and prioritize self-care activities that promote relaxation and stress relief.
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Consider Specialist Referrals: If no conclusive diagnosis emerges, discuss with your doctor the potential need for referrals to specialists in infectious diseases, rheumatology, or pain management depending on what the results suggest.
Your situation is complex, but with the ongoing investigations and your proactive approach, there’s hope for clearer answers and effective management of your symptoms. Let me know if you have more questions or need clarification on any point.
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