OpenHealth Q&A

Seeking Advice on Managing Symptoms and Diagnosis

(If you're only interested in my main question, feel free to skip to the end.) My health struggles began during childhood when I faced issues with deformed and flat feet. Early closure of my growth plates led to surgical intervention on both feet, where bones were cut and reshaped to create an arch, with additional devices placed to ensure proper alignment. This experience confined me to a wheelchair for a year and a half. Despite a period of relative stability, my feet and joints began to deteriorate around the ages of 22 to 25. I initially attributed the pain to my HVAC job, assuming it was just part of the work routine. However, at 26, I was hospitalized due to severe pain in my lower left abdomen, which turned out to be perforated diverticulitis. This resulted in a five-day hospital stay where I was treated with IV antibiotics, and my health has worsened ever since. Less than a year later, I developed blind spots in my right eye but couldn’t seek medical attention as I had no insurance and was caring for my mother, who had recently undergone brain surgery. Afterward, I began experiencing persistent diarrhea, abdominal pain, extreme fatigue, and unbearable heat intolerance. A subsequent colonoscopy yielded no findings, and I underwent a total of three colonoscopies with similar results, all requested by my healthcare providers. Fast forward a year and a half, I awoke with significant vision loss in my right eye and impaired vision in my left. Thankfully, I had access to indigent healthcare because I had been unable to work for a while due to my previous health concerns. At the hospital, after a series of consultations, I was referred to a retina specialist who diagnosed me with Punctate Inner Choroiditis, indicating swollen optic nerves in both eyes likely stemming from an underlying autoimmune disorder. He advised me to consult a rheumatologist but wouldn’t begin treatment until I received their opinion. While awaiting this visit, I experienced a severe decline in health, suffering from daily high fevers that prolonged my bed rest. I lost significant weight and emotional distress led to uncontrollable crying. Three months later, I finally met with a rheumatologist, who ordered extensive testing. She discovered that I carry genes associated with Familial Mediterranean fever (P.P.369Ser) and Behçet's disease (HLA-B51). She promptly prescribed colchicine at a dosage of 0.6 mg twice each day, which dramatically improved my symptoms within two weeks. While some inflammation and joint pain persisted, my vision began to clear. My rheumatologist also observed body lesions and oral ulcers that I had experienced for years—only recently realizing these were not common symptoms. On recollection, I remembered occasional genital ulcers but had not had any in recent years. After this, my GI specialist conducted an endoscopy revealing Barrett's esophagus, a hiatal hernia, and mild inflammation in my stomach. A few months down the line, my health had improved, though overwhelming fatigue still plagued me; I found myself sleeping 15-16 hours nightly and could manage only two activities a day before needing rest. Additionally, my foot problems have continued to worsen, resulting in painful bunions that have re-emerged. I also face persistent diarrhea, occurring 7-10 times daily, and while my eye condition is slightly better, my situation remains precarious. My hometown rheumatologist suggested visiting a specialized research hospital in Dallas where Behçet's disease is more commonly treated. After my initial consultation, the specialists claimed my local rheumatologist was doing everything right but noted that I appeared particularly hypermobile and referred me to a physical medicine doctor for further evaluation. During my recent visit to the physical medicine doctor, she spent three hours reviewing my medical history and ultimately diagnosed me with hypermobile Ehlers-Danlos syndrome—something I had never heard of until that day, but it comes with additional complications. My rheumatologist continues to treat me for suspected Behçet's but has not formally diagnosed me at this point, and she is relocating out of Texas. Other local rheumatologists have indicated they will not treat patients with Behçet's, necessitating my commute of three hours for my Dallas appointments. While Familial Mediterranean fever is still a consideration due to my childhood symptoms, the treatment strategy will largely align with that for Behçet's disease. My condition has made the past year and a half extremely challenging, leading me to a few pertinent questions. I still endure debilitating pain, and treatments with diclofenac, whether topically or orally, have proven ineffective. Due to elevated liver enzymes, my GI doctor has advised against both ibuprofen and aspirin, and since Tylenol is off-limits because of my other medications, I feel at a loss for pain management. My ongoing diarrhea persists despite my attempts to manage it with fiber supplements. The chronic joint pain, eye discomfort, and abdominal distress continue to be overwhelming. I desperately seek advice on what my next steps should be. I am currently waiting on a decision regarding disability, but at 30 years old, my goal is not to remain reliant on benefits indefinitely; instead, I aspire to regain my health and return to working in HVAC. Unfortunately, given my current health trajectory, that seems increasingly elusive. Thank you for reading this lengthy update, and I appreciate any thoughts or recommendations you may have. I am truly in need of guidance at this desperate juncture.

Answers (1)

6/19/2025, 5:20:57 PM

OpenHealth AI

I'm truly sorry to hear about the challenges you're facing with your health. It sounds like you've been through a lot, and it's understandable to feel overwhelmed given the complexity of your conditions. Let's focus on practical steps you can take to help manage your symptoms effectively and regain some control over your health.

Key Points:

1. Pain Management Options: Explore alternative methods for alleviating pain, especially since traditional medications aren't suitable for you.
2. Addressing Gastrointestinal Symptoms: Find ways to manage your persistent diarrhea and abdominal discomfort.
3. Health Management Support: Consider how to maintain your healthcare plan and support moving forward, especially with future rheumatology appointments.

Pain Management Options:

Given the limitations with traditional pain relievers (diclofenac, NSAIDs, and acetaminophen), consider the following alternatives:

• Non-Pharmacological Approaches:

  • Physical Therapy: Since you’ve been referred to a physical medicine doctor, engaging in targeted physical therapy can help with pain relief and improve mobility. A physical therapist can provide you exercises tailored for your hypermobility and chronic pain.
  • Mind-Body Techniques: Techniques such as mindfulness meditation, yoga, or tai chi can be beneficial. These can reduce stress levels and help manage chronic pain.
  • Heat or Cold Therapy: Apply heat packs or ice packs to painful areas as needed. Heat can help relax muscles, while cold can reduce inflammation.

• Alternative Medications: Discuss the possibility of using medications such as gabapentin or duloxetine with your healthcare provider. These may help with nerve-related pain or have mild anti-inflammatory effects.

Managing Gastrointestinal Symptoms:

Persistent diarrhea can be very disruptive, so try these tailored strategies:

• Dietary Adjustments:

  • BRAT Diet: Focus on bananas, rice, applesauce, and toast to help firm up stools. These foods are gentle on the stomach.
  • Limit Fiber Supplements: Since fiber has not helped, consider discussing with your GI specialist the types of fibers you’re using, as some can exacerbate diarrhea.

• Hydration: Ensure you are staying well-hydrated, especially with diarrhea. Electrolyte solutions can be beneficial for replenishing lost fluids and minerals.

Health Management Support:

Managing multiple appointments and complex healthcare needs can be taxing. Here’s what to consider:

• Continuity of Care: Since your local rheumatologist is relocating, prioritize establishing care with a new rheumatologist familiar with Behçet's and hypermobile Ehlers-Danlos syndrome. This may provide the necessary support and consistent management of your conditions.

• Support Networks: Don't hesitate to reach out to local or online support groups for people with similar conditions. Sharing experiences and coping strategies can be immensely helpful and provide emotional support.

• Document Symptoms: Keep a symptom diary to track your pain, diarrhea, and any other symptoms. This can be an invaluable tool for your healthcare providers to understand patterns and suggest personalized treatments.

Next Steps:

1. Schedule an appointment with a physical therapist to establish a targeted program tailored to your needs.
2. Discuss further pain management options with your rheumatologist or primary care provider.
3. Consult with your GI specialist about your ongoing diarrhea for tailored dietary adjustments and further interventions.
4. Seek referrals or contacts for new rheumatologists to ensure continuity of care.

Understanding your hope to regain your health and return to work, remember that progress can take time, and focusing on small, manageable steps will be crucial. I'm here to support you as you navigate this journey. Please feel free to share updates or ask additional questions as they arise.