Struggling with Health Decline and Persistent Discomfort
I am an 18-year-old female, standing at 5 feet tall and weighing 108 pounds. The only medication I take is for iron deficiency. For as long as I can remember, I have struggled with joint pain, starting from the age of 5. At 12, I received a positive test result for ANA, but it did not receive the attention it warranted. Unfortunately, my health has deteriorated to the point where I find myself mostly confined to bed due to extreme exhaustion, cognitive difficulties, significant hair loss, persistent pain, and repeated bouts of infections. I used to suffer from the flu nearly every month. There are instances when my arms and legs feel weak and numb, causing me to limp unexpectedly. Recent blood tests revealed an alarming decrease in my white blood cells, including low counts of absolute neutrophils, lymphocytes, and monocytes. Following a second ANA test after several years, the results were once again positive, now showing nuclear and distinct nuclear dots. Additionally, I tested positive for the Scl-70 antibody. My primary care physician has referred me to a rheumatologist; however, my appointment is not scheduled for another three months, and I am experiencing a rapid decline in my condition, remaining mostly bedridden with limited strength in my limbs. In addition to my existing symptoms, I have started experiencing new issues such as chest pain, which intensifies with any physical activity or exertion. Shortly after the beginning of the school year, I fell ill with a virus, leading to severe throat pain that makes swallowing incredibly difficult. I feel miserable and am deteriorating quickly. Honestly, I feel lost as I can no longer enjoy life due to the overwhelming discomfort. The persistent burning sensations throughout my body are unbearable. I desperately wish for some answers to my condition.
Answers (1)

8/21/2025, 10:41:31 PM
OpenHealth AI
I'm truly sorry to hear about the difficult situation you're facing. It sounds incredibly challenging, especially with the symptoms you've described and the impact they have on your daily life. It's understandable to seek answers and relief. Given the complexity of your symptoms and prior health issues, it's vital to address your situation with care.
Main Points
You've described persistent joint pain, extreme fatigue, neurological symptoms, and significant lab results indicating low white blood cells and positive ANA and Scl-70 antibodies. It's important to manage symptoms while awaiting your rheumatology appointment.
Explanation
You are experiencing a range of symptoms that can be linked to autoimmune conditions, such as systemic sclerosis (scleroderma) given the positivity of the Scl-70 antibody. The positive ANA test indicates an autoimmune process, and your symptoms warrant further investigation by a specialist. The constitutional symptoms like extreme fatigue, joint pain, and neurological issues are concerning, especially with your current low white blood cell counts.
Next Steps
While waiting to see the rheumatologist, here are some prioritized actions you can take to help manage your situation:
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Symptom Monitoring:
- Keep a detailed symptom diary noting when symptoms occur, their severity, and any potential triggers. This can be shared with your rheumatologist to provide a clearer picture of your condition.
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Hydration and Nutrition:
- Aim to stay hydrated; drink plenty of fluids, especially if you're experiencing any fever or illness. If swallowing is painful, try cool or soft foods to ease any discomfort.
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Rest and Energy Conservation:
- Focus on resting as much as you can. Try to conserve energy for essential daily activities. Small, manageable tasks can help prevent overwhelming fatigue.
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Pain Management:
- For pain relief, you may consider over-the-counter medications like acetaminophen or ibuprofen if you aren’t contraindicated or have allergies to these. Always follow recommended dosages.
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Support:
- Engage with friends or support groups, even online, who understand what you're going through. Emotional support is important too.
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Monitor for Urgent Symptoms:
- Given your chest pain and weakness, if these worsen or if you experience shortness of breath, dizziness, or severe headaches, seek immediate medical attention.
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Prepare for the Rheumatologist Appointment:
- Write down any specific questions or concerns you want to discuss during your upcoming appointment. Include all symptoms, how long they last, and anything that seems to make them better or worse. This preparation can help the doctor understand your condition more fully.
While the three-month wait for the appointment feels long, adequately documenting your symptoms and managing your health can potentially lead to better treatment outcomes. You're not alone in this, and seeking help is a positive step forward.
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