OpenHealth Q&A

Navigating Complex Medical Challenges: A Call for Guidance

This post includes sensitive topics and is tagged NSFW. Currently, I find myself overwhelmed by an array of medical challenges that seem to confound even my healthcare providers. To say this past year has been tumultuous for my health is an understatement; it has truly been one of the most difficult periods of my life. At present, I rely heavily on a wheelchair and a cane for mobility. To summarize my medical history: I have experienced a staggering 24 kidney stones in my right kidney alone and one in the left, leading to two surgeries and the placement of two stents. I have also suffered from two transient ischemic attacks (TIAs). Additionally, I was struck by a vehicle back in April while outside my own car. My history includes several anaphylactic responses, as well as a severe kidney infection resulting in sepsis earlier this year. Overall, I have been unable to experience a sense of physical wellbeing for more than a year now. Notably, I sometimes endure complete paralysis in my right leg when pain levels escalate; as an ER doctor explained, excessive pain can lead the brain to effectively disable a limb. My current diagnoses include: - Levoscoliosis - Significant bulging of the L4-5 disc - Degenerative disc disease - Chronic multilevel facet hypertrophy in the lumbar spine - Postoperative pain from an open hip surgery - Bilateral occipital neuralgia - Functional neurological disorder - Complex regional pain syndrome I have undergone the following surgical procedures: - Mastectomy in December 2023 - Total hysterectomy (including both ovaries, fallopian tubes, uterus, and cervix) in October 2023 - Repair for a hip tendon tear in November 2024 - Kidney stone extractions in January 2025 - Colonoscopy and endoscopy scheduled for May 2025 My current regimen of medications and supplements is as follows: - Toradol IM (15mg/ml, three times daily or oral 10mg three times daily) - Baclofen (oral 10mg three times a day) - Ipratropium (nasal spray twice daily) - Testosterone (0.6ml weekly) - Pepcid (20mg twice daily) - Lidocaine (4% applied to the back of my head three times a day) - Magnesium gummy (one nightly) In terms of substances consumed in the last year, I have tried cocaine five times and ketamine seven times. I am experiencing a range of symptoms regularly, including but not limited to: - Fluctuating fevers (often above 101°F) - Frequent chills - Daily hives on my arms (currently itchy as I write this) - Significant pain in my right kidney area (rated 7/10 every day) - Persistent pain from mid-back radiating to mid-right thigh (constantly between 6-9/10) - Neck pain during conversation or prolonged sitting/standing - Diarrhea upon each bowel movement - Unintentional weight loss of around 80 pounds over a two-month span - Episodes of fainting (at least three times a week) - Continuous weakness in my right leg - A recurrent headache since January 2021 (constant occipital neuralgia) - Daily upper back discomfort - Constant lack of appetite, though I force myself to eat - Often remaining awake for five consecutive days, recently treated with baclofen - Frequent kidney stones averaging 3-4 per month, with spikes (eight in January) - Continuous abdominal bloating - Occasional blood in stool (once daily) - Nighttime shoulder pain - Increased hair loss, particularly during recent weight loss Regarding allergies, all of which have surfaced through anaphylactic reactions unless stated otherwise, I am allergic to: - Cantaloupe - Honeydew melon - All nuts - Coconut - Ginger root - Mango - Pineapple - Daridexorant - Cipro (causing full-body hives) - Azithromycin - Sulfa drugs - MRI contrast The specialists I consult and their focus areas include: - Urologist for recurrent stones - Primary care provider for overall health management - Neurologist for addressing occipital neuralgia - Neurophysical therapist for functional neurological disorder and complex regional pain syndrome - Upcoming appointment with physical medicine and rehabilitation specialist - Allergist for allergy management - Gastroenterologist for gastrointestinal symptoms including blood in stool - Sleep specialist for sleep-related issues It is worth mentioning that my hip tendon tear and spinal disc problems are suspected to have originated from sexual activity in March 2024. In additional context: - I am fully vaccinated against various diseases. - I lack any psychiatric diagnoses, having been evaluated multiple times to rule out psychosomatic conditions. - Hormone replacement therapy has been verified as unrelated to my health issues. - I have contracted COVID-19 six times. - I have undergone numerous tests, including CTs, MRIs, blood work, and urinalyses, and have access to results if required. I can’t shake the feeling that something is fundamentally off with my health status. With so many intertwined issues, I find myself at a loss as to how best to proceed. Is there a specific path or area I should investigate further? Moreover, how can I effectively communicate with my primary care provider to express the severity of my back and leg conditions? I am currently unable to walk more than 20 feet or stand for more than five minutes. I feel disheartened and uncertain about how to move forward. Any guidance or suggestions would be greatly appreciated!

Answers (1)

7/11/2025, 1:10:51 AM

OpenHealth AI

I'm truly sorry to hear about the overwhelming challenges you are facing with your health. It’s understandable to feel disheartened given the complexity of your situation. You have described numerous medical issues, and it's clear that managing your health feels like a monumental task. Let’s break this down into manageable steps to help you feel more in control.

Key Points:

1. Focus on Symptom Management: Address the most debilitating symptoms first, particularly pain and mobility issues.
2. Communication with Healthcare Providers: Ensure your concerns are clearly communicated to your primary care provider and specialists.
3. Investigate Underlying Causes: Consider focused testing for persistent symptoms such as fevers, blood in stool, and significant weight loss.

Explanation:

Your medical history is complex and multifaceted, involving multiple systems. It’s important to understand that with conditions like complex regional pain syndrome and degenerative disc disease, effective symptom management and clear communication with your healthcare team are crucial. The symptoms you describe, including unexplained fevers and gastrointestinal issues, warrant further exploration to rule out any underlying infections or complications.

Actionable Steps:

1. Symptom Management:

   • Continue taking your pain medication as prescribed, but discuss with your healthcare provider about potential adjustments if pain remains uncontrolled.
   • Consider using strategies for pain relief, such as heat/cold therapy, gentle physical therapy exercises tailored for your mobility issues, and mindfulness or relaxation techniques to manage pain perception.

2. Document Your Symptoms:

   • Keep a detailed diary of your symptoms, including their frequency, severity, and any potential triggers. This will be useful during your appointments and can help your providers understand the full scope of your experience.

3. Effective Communication:

   • Prepare a summary of your symptoms and how they impact your daily life. When communicating with your primary care provider, be direct and express your limitations, such as your ability to walk and stand. Use phrases like, "I can't walk more than 20 feet or stand for more than five minutes," to emphasize the severity of your condition.
   • Ask for a comprehensive review of your medications and potential interactions, especially since you are on several prescriptions. Discuss any side effects that may exacerbate your symptoms.

4. Investigate Further:

   • As you're experiencing fluctuating fevers and significant weight loss, ask your healthcare provider about advanced imaging or tests to investigate potential hidden infections or other systemic issues.
   • Consult your gastroenterologist regarding the blood in your stool and gastrointestinal symptoms, as this requires prompt attention.

5. Maintain Regular Follow-Ups:

   • Keep a steady schedule of appointments with your specialists. If possible, try to have a primary healthcare provider serve as your central coordinator to manage communications among various specialists.

6. Seek Support:

   • Consider connecting with support groups for individuals with chronic pain or related conditions. This can provide you with emotional support and practical advice from others who may be facing similar situations.

Final Note:

I understand that navigating through your medical challenges can feel daunting, but incremental progress can lead to better overall health management. You're not alone, and patient advocates or care coordinators may also be valuable in helping you communicate your needs effectively. Please know that your feelings and concerns are valid, and taking these steps can help you regain some control over your health journey.