OpenHealth Q&A

Navigating Complex Health Issues: Hip Pain, Heart Conditions, and ADHD

Hello, I'm a 37-year-old woman reaching out for some guidance. To summarize my main concern: is it possible to be diagnosed with both POTS (Postural Orthostatic Tachycardia Syndrome) and Long QT syndrome simultaneously? Additionally, if I’m experiencing Ehlers-Danlos Syndrome (EDS) symptoms, severe hip discomfort, potential arthritis, and misaligned joints, what specific details should my doctor include on the X-ray requisition to aid the technician in their assessment? While I suspect I have ADHD—I come from a family with a history of ADHD and Autism—my own academic success came from sleepless nights rather than optimal study habits. Recently, I’ve found a physician willing to consider my symptoms and even discuss medication options. Unfortunately, my recent ECG didn’t show promising results; it revealed several irregularities such as a Prolonged QT interval, possible left atrial enlargement, and low voltage QRS complexes. I can share visual documentation if needed. Currently, I’m awaiting a consultation with a cardiologist. My physician mentioned I’m borderline, which made her hesitant to refer me. However, I believe many symptoms I’ve experienced throughout my life, dating back to having my heart monitored in elementary school, are being overlooked. Instead, they’ve been attributed to asthma, anxiety, or simply being out of shape—despite my involvement in various sports and physical activities. Now, most of my favorite pursuits seem daunting, often leaving me fearful of fainting when I exert myself. I’ve faced numerous situations where I felt isolated, grappling with an unyielding elevated heart rate. For the past 15 years, I’ve mostly given up on seeking help due to repeated dismissals from medical professionals. My health issues have become overwhelming, including these cardiac concerns, joint problems, gastrointestinal distress, and autoimmune complications, which I recognize are not uncommon among women who suppress their stress. I recently underwent a colonoscopy to investigate persistent diarrhea, but the findings were unremarkable, leaving IBS as a possible diagnosis. Additionally, I've been dealing with acid reflux, tenderness, and a burning sensation in my stomach. During my quest for answers, I stumbled upon the link between ADHD, POTS, and Ehlers-Danlos Syndrome. I strongly suspect I have both and would like to pursue a formal diagnosis. Living in Quebec, I often face language barriers with my healthcare provider, who is relatively new and wasn’t familiar with POTS or Long QT Syndrome when I mentioned them. My first question is whether someone can simultaneously present with both POTS and Prolonged QT Syndrome, or are they mutually exclusive? I’ve noticed several overlapping symptoms, but they also have distinct characteristics. For instance, I experience dizziness while standing and struggle with heat—making exercise in hot, humid weather particularly challenging—along with cold extremities and fatigue. Contrarily, for Long QT Syndrome, I frequently have palpitations and chest pain while resting, especially lying down. I want to equip myself with as much knowledge as possible before my cardiology appointment, as these consultations in Canada often come with limited interactions. My second inquiry pertains to my hyper-mobility and Ehlers-Danlos Syndrome, which share some symptoms with heart conditions. While my joints don’t seem as extreme as some, my ankles are susceptible to rolling, and I’ve dislocated my knees multiple times. Furthermore, I experience common symptoms like joint cracking, easy bruising, extreme fatigue, and unusual hand positions while writing due to backward-bending joints. However, what troubles me most is the significant hip pain I have endured since my early twenties. Standing causes the most discomfort, and my love for live music often requires me to endure pain during shows, sometimes leading to heavy drinking in my younger years to cope. I’ve since moderated my drinking, use preventive pain relief, and frequent these events less often. Travel, which I once cherished, has become daunting and requires extended recovery periods. My yoga practice is occasionally hindered by over-exertion, leading to prolonged periods of discomfort. These episodes can occur spontaneously without exercise as a trigger, often resulting in intense, radiating pain that confines me to bed with heating pads for several days. This pattern suggests arthritis, which is also prevalent in my family. Unfortunate as it is, I’ve commonly been told I’m merely out of shape, despite maintaining an active lifestyle. While I understand that gaining muscle strength may alleviate some symptoms, the pain from exercising can create a discouraging loop. If it weren't for these hurdles, I would likely participate in physical activities more often and enjoy events like music festivals multiple days in a row. I even pondered using a cane to get through upcoming seasons, which feels excessive. I am uncertain what a formal diagnosis might yield or how I can reduce my initial pain to enable muscle building, yet I am open to exploring every option. My doctor agreed to refer me for an X-ray for my hips, but the initial request was combined with another for my shoulder injury, leading to an incomplete rationale for the hip X-ray. When I approached her again, she asked, "What are we looking for, arthritis?" After confirming, that became the request but I wonder if there’s more specificity necessary for the technician to focus on during the imaging process. My physician tends to operate at a basic level, albeit is willing to follow my lead; hence, it’s crucial that I direct her effectively to avoid lengthy waits for incorrect screenings. Additionally, I’m navigating potential diagnoses for PCOS and endometriosis, which add layers of chronic pain and overlap with my current challenges. I meet all the criteria for PCOS—intense menstrual cramps, irregular cycles, hormonal fluctuations causing hair growth in unwanted areas, facial acne, and difficulty maintaining weight, particularly in my abdominal area, despite a healthy diet and active lifestyle. Endometriosis also has a familial connection. Finally, considering my diverse array of symptoms—prolonged fatigue, persistent body pain, joint hyper-mobility, heart difficulties, gastrointestinal complications—are there any other tests or evaluations I should pursue to address these myriad issues? Or should I simply write off my body? (If only that were a feasible option!) Apologies for this lengthy message, but my ADHD leads to expansive thoughts. I would greatly appreciate any assistance you could offer. Also, an additional note: should I require beta blockers, is it still safe to try Vyvanse, or would the risks be too significant?

Answers (1)

3/21/2025, 2:11:00 AM

OpenHealth AI

Thank you for sharing your detailed concerns. You're dealing with several complex health issues that deserve careful attention. Here's a summary of key points and actionable guidance for you:

Main Points:

1. Yes, it is possible to have both POTS (Postural Orthostatic Tachycardia Syndrome) and Long QT Syndrome simultaneously.
2. When requesting an X-ray for your hips, specify symptoms and conditions to help focus the technician's assessment.
3. Given your many symptoms, ongoing communication with your healthcare providers and further evaluations will be crucial in managing your overall health.

Explanation:

1. POTS and Long QT Syndrome: There is a recognized overlap between these conditions, especially in patients with connective tissue disorders like Ehlers-Danlos Syndrome (EDS). Both can lead to autonomic dysfunction and can coexist. Symptoms such as dizziness and palpitations can be part of both syndromes, but they often present differently.

2. X-ray Requests: When discussing your hip X-ray with your physician, emphasize your hip pain and the need to assess for arthritis and joint alignment issues due to EDS. Request the following specifics in the requisition:

   • Focus on the hip joint integrity.
   • Assess for arthritis and possible joint instability.
   • Mention the need to evaluate the alignment for hyper-mobile joints.

3. Next Steps for Your Health Management:

   • Documentation: Keep a symptom diary that records your heart rate, pain intensity, and other symptoms related to both POTS and EDS. This documentation will be helpful for your cardiologist and other specialists.
   • Pain Management: Consider exploring gentle exercises like swimming or cycling which may be less painful and help build strength. Use heat packs or discuss over-the-counter anti-inflammatories with your physician for hip pain management.
   • Migrating Discussions: At your upcoming cardiology appointment, discuss your ECG findings thoroughly. Bring up the potential impact of ADHD medications on your heart findings, as it's important to clarify this with your cardiologist.
   • For PCOS and Endometriosis Concerns: Connecting with a gynecologist may provide you with more insights into managing these symptoms effectively, particularly given the overlaps with your chronic pain.

4. Future Evaluations: Consider asking your physician if any of the following could be valuable:

   • Genetic testing for EDS or testing to rule out other connective tissue disorders.
   • Autonomic testing for POTS if you find your symptoms worsening.
   • A referral to a pain specialist who focuses on chronic pain syndromes, which may help you find more tailored treatments.

5. Long-term Strategy: Since you are managing ADHD alongside cardiac concerns, maintaining close communication with both your psychiatrist and cardiologist is essential. Ask direct questions about the safety of any medications like Vyvanse if beta-blockers are considered.

Conclusion:

Keep advocating for your health and voice your concerns with clarity and specificity. You know your body best, and having detailed discussions with your healthcare providers can significantly aid in finding not just diagnoses but effective treatments. Remember, you're not alone in this journey, and your persistence is key to finding the right support and solutions.