Young Woman Faces Mysterious Bone Issues and Fatigue After Years of Struggle
Hello, everyone, I am reaching out in search of guidance regarding a perplexing health situation I have faced for nearly five years. I realize that while Reddit cannot provide a diagnosis, I’m hopeful that someone might offer advice or share similar experiences that could help me navigate this. I’m a 20-year-old female, and my health challenges began at the age of 15: • Initially, I experienced multiple dislocations in my right knee, which ultimately required reconstruction surgery. • During my recovery phase in 2021, amidst the COVID pandemic, I contracted not only the virus but also pneumonia, MRSA, and Klebsiella. My fever soared to an alarming 105 degrees, leading to an extended hospital stay, a PICC line for several months, and an irrigation surgery to address severe infection directly. • As I began to heal, my left knee began to dislocate as well, resulting in yet another reconstruction procedure, which fortunately was more successful. Since those surgeries, my health has deteriorated dramatically: • I endure relentless bone pain, predominantly in my knees. It’s an excruciating, rhythmic sensation akin to being struck with a hammer. Pain specialists concur that it seems more akin to genuine bone pain rather than inflammatory arthritis. • I’ve suffered several fractures in my wrist and ankle despite minimal incidents leading to them. Imaging tests revealed fibromas in my legs, and a doctor’s note even illustrated my bones as resembling “candle wax.” • Since the age of 13, I have been grappling with fatigue, cognitive sluggishness, feelings of unreality, and dissociation, which has progressively worsened over time. Back then, medical professionals dismissed my concerns and suggested I simply needed to lose weight. • Additionally, I faced headaches and vision decline starting at 13 years old. My eyesight deteriorated from -1.50 to -6.50 in a matter of just a few years, and I learned that there was swelling on my optic nerve, yet the response remained the same—“just lose weight.” • After enduring this for countless years, I opted for gastric bypass surgery in June 2024, which resulted in a loss of over 100 pounds. Unfortunately, my pain and fatigue have persisted and, in some respects, intensified. • I experience severe episodes of near-fainting, visual disturbances like seeing stars, and an overwhelming sensation of impending unconsciousness. I have a hematology consultation scheduled soon to investigate these symptoms further. I have consulted with various specialists, including experts in endocrinology, rheumatology, pain management, orthopedics, and ophthalmology. The rheumatologist suggested the possibility of seronegative rheumatoid arthritis, but my inflammation markers appeared normal, with only borderline RF levels and a negative ANA result. Medications I am currently using for pain management include: • Norco 5 mg taken four times daily. Since my pain is unending, I have not experienced any relief; I am reluctant to rely on pain medication, but options are limited right now. I appreciate understanding about this; I monitor my intake closely with family support. • I take Tylenol (admittedly in excessive doses of over 6,000 mg daily, though I know this poses risks) as I can’t use NSAIDs due to my gastric bypass. • I also utilize Lyrica, lidocaine patches (when insurance allows), and heat/ice therapies. The core issue remains: I fear my bones are deteriorating. It is alarming that my situation isn’t being taken seriously, as I am shuffled around specialists without receiving any concrete answers. This ordeal is profoundly disruptive to my life as a college student. What I seek from this community: • Has anyone else faced a similar array of symptoms (fractures, significant bone pain, fatigue, headaches, vision impairment, all while lab results show no inflammation)? • Are there particular conditions or examinations I should bring up with my healthcare providers or hematologist? • How can I assert myself in these discussions to prevent being trivialized with suggestions to merely “take Tylenol”? Thank you for taking the time to read my lengthy post. I do not intend to come across as uninformed—I am just genuinely seeking support and solutions. If you are inclined to pray, I'd appreciate being included in your thoughts. This experience is incredibly challenging, and at just 20 years old, I wouldn’t wish this on anyone.
Answers (1)
8/21/2025, 3:22:19 PM
OpenHealth AI
I'm truly sorry to hear about your ongoing health challenges; it sounds incredibly difficult to navigate such persistent and complex issues at your age. It's vital to adequately address your symptoms while also ensuring you feel heard and supported in your journey to better health.
Key Points:
- You have undergone multiple surgeries, experienced keen bone pain, fractures, cognitive and visual disturbances, and are looking for clarity on your persistent symptoms.
- Your treatment seems insufficient given your debilitating pain and ongoing fatigue, despite thorough investigations and medications.
Explanation
Your symptoms significantly impact your quality of life and raise valid concerns about possible underlying conditions beyond what has been considered. Persistent bone pain, fractures, fatigue, and neurological symptoms can suggest a variety of potential issues including but not limited to metabolic bone diseases, connective tissue disorders, or even systemic conditions that might not always show up in standard lab tests.
Many people in similar situations have found it challenging to get proper diagnoses or to be taken seriously. This may often lead to feelings of frustration when recommendations seem to avoid addressing the root causes of their symptoms.
Next Steps
Here are some prioritized actions you can take:
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Document Everything: Keep a detailed symptom diary. Note the severity of your pain, any triggering activities, and how your symptoms vary day-to-day. This can be invaluable in consultations.
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Advocate for Comprehensive Testing: At your upcoming hematology consultation, express a desire for a complete evaluation, including:
- Bone density testing: To check for osteoporosis or other metabolic bone disorders.
- Genetic testing: This might help identify any genetic conditions affecting bone health (consider speaking to a genetic counselor).
- Immunology evaluations: Given your symptoms, consider discussing tests for autoimmune disorders that might not show classic inflammation markers.
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Explore Pain Management Alternatives: Talk to your healthcare provider about finding a pain management specialist who can tailor a plan. Options may include:
- Physical therapy: A therapist skilled in working with chronic pain might suggest low-impact exercises or modalities that could help maintain joint function without aggravating your pain.
- Diet and nutritionist consultation: A specialized diet might help address potential nutritional deficiencies, especially after gastric bypass surgery.
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Communicate Your Needs: When discussing your concerns with doctors, it may help to:
- Be clear and concise about how your symptoms affect your daily life.
- Use your symptom diary as evidence to illustrate the severity and complexity of your issues.
- Request a referral to a multidisciplinary team familiar with complex chronic conditions.
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Self-Care Strategies: While managing your pain:
- Stay hydrated and maintain a balanced diet to support your overall health—consider a dietitian experienced with post-bariatric surgery.
- Focus on gentle, low-impact activities such as swimming or yoga, which can help maintain muscle strength without stressing your joints.
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Emotional Support: Facing chronic pain and symptoms can take a toll mentally. Consider seeking support—whether through counseling, support groups, or therapy—specifically tailored for chronic illness.
Your journey is challenging, but you are taking the right steps by seeking information and support. Remember, you deserve to have your concerns taken seriously, and advocating for comprehensive care is crucial in getting the help you need. Please keep me updated, and I wish you well on your journey to better health.
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