Struggling with Vascular Health: A Call for Help
Situation Overview: I am a 31-year-old woman, a survivor of two deep vein thrombosis (DVT) incidents, which first required intensive care when I was just 18 years old. Diagnosed with protein S deficiency and an MTHFR mutation, I am currently prescribed Xarelto 20mg indefinitely. I want to clarify that I am confident I am not experiencing a new clot, as I have no symptoms such as warmth or discoloration. My intuition tells me I might be dealing with post-thrombotic syndrome (PTS), chronic venous insufficiency (CVI), chronic inflammation, or lymphedema. However, I lack a definitive diagnosis because medical professionals seem to overlook my concerns. After waiting six months to see a specialist in veins, I left the appointment feeling insignificant; the doctor barely acknowledged my pain because there were no visible signs of distress. Despite being energetic, maintaining a healthy diet, and exercising regularly, my pleas for help were met with indifference. I am exhausted by the repeated advice to simply elevate my legs and wear compression garments. I already practice that faithfully! I engage in manual lymphatic drainage, my husband helps relieve the tension in my legs, I take intermittent walks, and I try various wellness techniques like dry brushing. I’m pleading for a solution to ease my discomfort, which has led to panic attacks fueled by my fear of developing another clot. My symptoms consist of persistent swelling and inflammation, particularly around my knees and between my ankles and calves, where my skin feels hard to the touch. I experience extensive bruising across my legs, intense pain radiating from my feet to my calves, episodes of low blood pressure and dizziness, brain fog, and chronic fatigue. It's unclear whether the fatigue and mental fog are connected. Sometimes my body demands I rest and elevate my feet, yet I know I should maintain my activity level, creating a vicious cycle. I used to enjoy hiking, but the pain has made it impossible. The thought of enduring this ongoing struggle has me willing to sacrifice my savings for some relief and a return to normalcy. Unfortunately, the compression and elevation methods provide only minimal, temporary comfort. Are there any supplements I can safely take alongside Xarelto? Do I really have to endure another long month until my next appointment with a vein specialist? I'm terrified that I will encounter yet another professional who disregards my experiences. I feel lost and desperately need guidance.
Answers (1)
9/4/2025, 11:30:57 PM
OpenHealth AI
I understand you're feeling overwhelmed by your persistent symptoms and the challenges in getting the support you need. Your history of deep vein thrombosis, protein S deficiency, and MTHFR mutation, along with the ongoing discomfort you're experiencing, certainly warrant proper attention and understanding. You're already taking proactive measures, which shows your commitment to managing your health. Let's focus on providing clarity on your situation and next steps to help you feel more empowered in managing your vascular health.
Explanation of Your Situation
Post-thrombotic syndrome (PTS) and chronic venous insufficiency (CVI) are conditions that can occur after DVT, leading to swelling, discomfort, and other symptoms like the ones you describe. Your symptoms of persistent swelling, tingling, and fatigue can be distressing, and it's important to acknowledge how these affect your quality of life. It's understandable to feel anxious about potential complications, especially with your medical history.
Prioritized Next Steps
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Track Your Symptoms in Detail:
- Keep a detailed journal of your symptoms, noting what you experience daily, when, and any triggers. This can help you identify patterns and provide valuable information for your next appointment with a healthcare provider.
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Revisit Compression Therapy:
- Since you're already using compression garments, ensure they are the appropriate size and type. Consider discussing with a certified fitter about different levels of compression, as some may offer better support for your specific symptoms.
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Request Another Specialist Consultation:
- If possible, seek a second opinion from another vein specialist or a vascular medicine expert. Express your symptoms in detail to ensure they understand your concerns fully. Don't hesitate to advocate for yourself until someone addresses your needs.
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Consider Supplements with Caution:
- While on Xarelto, it's essential to be cautious with supplements. Some can interfere with blood clotting. Always consult your healthcare provider before adding anything new. Vitamin D and Omega-3 fatty acids may offer general health benefits without high risks, but again, confirm this with your doctor.
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Focus on Mental Well-Being:
- Your mental health is equally important. Consider engaging in mindfulness practices or counseling to help manage anxiety related to your health and symptoms. Breathing exercises or gentle yoga can also promote relaxation and might alleviate some stress.
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Explore Additional Therapies:
- Beyond manual lymphatic drainage, explore therapies like physical therapy, which can offer exercises tailored to improve venous health and help with swelling. Some patients find relief with techniques focused on strengthening legs and improving circulation.
Remember, your feelings are valid, and seeking relief from persistent symptoms is important. You deserve to be listened to and your experiences taken seriously. Should new symptoms arise, or if you feel your condition worsens, prioritize seeking immediate medical attention. Always keep advocating for your health; you're doing a great job by being proactive and seeking support.
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