OpenHealth Q&A

Despairing Over Unexplained Illness 😟

Greetings everyone, I apologize for the lengthy post but I could really use some guidance, and I would be immensely thankful for any advice you might have. I am a 25-year-old woman residing in the UK and receiving care through the NHS. Three years ago, I was diagnosed with atrial myopathy and dysfunction of the SA node, accompanied by numerous ectopic beats during physical activity, as well as atrial tachycardia, AF, and A flutter. Nearly two years ago, I underwent pacemaker implantation. Shortly thereafter, I began experiencing ventricular tachycardia, which has been quite distressing, leading to frequent visits to the emergency department. Over the past year, I have felt a significant deterioration in my health, struggling daily to manage. My blood tests reveal markedly elevated levels of ESR and haptoglobin, which I believe suggest an inflammatory process at play. I often develop rashes resembling tiny burst capillaries on my skin. Perhaps one of the most incapacitating symptoms I endure are the intense intestinal cramps that occur daily, leading to diarrhea that can hit up to 15 times a day, with some episodes showing an orange hue. During these instances, I often appear ashen, vomit, nearly faint, and break out in cold sweats. A recent measurement of calprotectin came back at 200, but with a clear colonoscopy (note: no biopsy was taken), I have been informed that it’s IBS and advised to simply manage it as best I can. The upper section of my abdomen feels tense and swollen, to the point where I sometimes feel as if I look pregnant. Additionally, I experience significant discomfort beneath my ribs on the right side, worsened when lying down, which can be quite nauseating at times. My blood pressure remains very low regardless of fluid intake (despite my efforts to increase salt intake). I frequently feel dizzy and nauseated, teetering on the brink of fainting several times a day, yet my heart rate has been examined and does not seem to contribute to these episodes. A CT scan revealed a notably dilated esophagus, leading to a diagnosis of achalasia. My gastroenterologist subsequently referred me to a rheumatologist, suspecting a potential connective tissue disorder due to the combined dilation of the esophagus and atria. I deal with severe heartburn and take 40mg of omeprazole, but upon attempting to reduce the dosage to 20mg, I feel extremely unwell. Additionally, I am battling iron deficiency anemia. I receive iron infusions, but my hemoglobin levels fall into the 80s within a few months. My ferritin level stands at 2 without intravenous iron therapy. My menstrual periods are heavy, which could possibly contribute to my anemia since they leave me feeling utterly incapacitated. Moreover, I endure a variety of strange and seemingly unrelated symptoms: - A sensation of a phantom “band” encircling my right arm and leg frequently - Intense spells of vertigo - Daily headaches - Sharp pains in my head - Visual disturbances like flashes - Persistent eyelid twitching - Recurring skin rashes - Lung nodules identified in my CT scan - Elevated cortisol levels - Itchy skin that is difficult to resist scratching, particularly on my legs - Numb patches on my back and widespread pain To add insult to injury, after I sent in four online consultations concerning the same stomach cramps in the span of a month, my new doctor (with whom I have yet to meet due to my previous GP leaving the practice) noted in my medical records that "she seems to be quite anxious." This remark deeply offended me. Though I am thankful for the NHS, it's undeniable that many processes are lengthy. Private healthcare is not an option for me. I appreciate that I have a rheumatology referral on the way, but the ongoing struggle is overwhelming. I worry that I may be overreacting, and I acknowledge how it may sound, but there are moments when I genuinely suspect something serious might be occurring, and I fear for my life. I am seeking any insights from anyone who has faced a similar situation or has suggestions on how I can effectively communicate these concerns to my GP.

Answers (1)

7/19/2025, 6:40:51 PM

OpenHealth AI

It sounds like you're going through a very challenging and distressing time with a complex set of health issues. While I cannot provide a diagnosis, I can help clarify some of your concerns and suggest steps you could take to advocate for your health.

Main Points:

1. Complex Symptoms: You have many symptoms that could be interconnected, and it's essential to address each of them with care.
2. Ongoing Medical Care: You have a referral to a rheumatologist, which is a crucial step. Proper communication with your healthcare provider can lead to better management of your symptoms.
3. Self-Advocacy: It’s important to voice your concerns clearly, ensuring you feel heard and understood.

Explanation:

Your symptoms — from gastrointestinal issues to neurological sensations — alongside your existing heart conditions can indicate a possible systemic process. Elevated ESR and haptoglobin typically suggest inflammation, which your physicians are right to investigate further. Given the complexity of your situation, it is crucial to ensure that all potential causes are considered, which often requires coordinated care from multiple specialties.

Next Steps:

1. Prepare for Your Rheumatology Appointment:

   • List Symptoms: Document all your symptoms, even those that seem unrelated, with details on their frequency and severity. This can help your specialist understand the whole picture.
   • Prioritize Concerns: Identify which symptoms are most concerning to you and focus on discussing those in your appointment.

2. Communicate with Your GP:

   • Request a dedicated appointment to discuss your debilitating symptoms and any new developments. You might mention the impact these issues have on your daily life and emphasize that you seek clarity on the potential for a systemic disorder.
   • If you feel dismissed, consider requesting a second opinion within the NHS or ask for your concerns to be documented properly to ensure they are addressed.

3. Monitor and Manage Immediate Symptoms:

   • Diarrhea and Abdominal Pain: Document your diet and episodes to identify any triggers. While waiting for specialist care, keeping a simple food diary may help highlight potential dietary influences.
   • Iron Levels and Heavy Menstrual Bleeding: Talk about your menstrual cycle with your healthcare provider; it may be possible to manage heavy bleeding with hormonal treatments that could help with your anemia.

4. Coping with Emotional Distress:

   • Engage in support groups where you can connect with others experiencing similar health challenges. This can alleviate feelings of isolation and anxiety.
   • Consider mindfulness practices or meditation as a way to help manage any feelings of anxiety that arise from your symptoms.

5. Follow-Up on Neurological Symptoms:

   • Ensure that your neurologist or primary care physician is informed about your neurological symptoms such as vertigo, headaches, and visual disturbances. These could have overlapping causes and need thorough evaluation.

Reassurance:

It’s perfectly normal to feel overwhelmed, especially with complex and distressing symptoms. Remember, you know your body best, and seeking clarity and support is vital. Keep advocating for your health and communicate openly with your medical team. You’re not alone in this journey. If you feel things aren’t right, it’s important to keep pushing for answers until you get the care you need.