Struggling for Recognition: My Health Journey
As a 38-year-old woman, I have faced a myriad of symptoms throughout my life, all of which seem to intensify as the years progress. Despite numerous visits to my general practitioner, no one has truly understood the root of my issues. In the past, rheumatologists hinted at conditions like EDS and Lupus, but my blood tests came back negative, and any mention of EDS didn’t make it into my medical records. My GP has classified my condition as fibromyalgia, leading to the dismissal of my pleas for further assistance or examination, with the assumption that, since I have fibro, they cannot provide any additional help. Recently, I decided to take a more proactive approach by scheduling an extended appointment with my doctor. I brought my sister along for emotional support, along with a comprehensive list detailing my symptoms, their onset, previous treatments I've attempted—both medicinal and lifestyle changes—and triggers that exacerbate or alleviate my condition. Additionally, I shared information about my family history, noting that many of my female relatives have experienced similar symptoms, albeit not as severely. It's worth mentioning that I also consult with a psychiatrist regarding my ADHD treatment. Currently, I take 40mg of Elvanse daily, supplemented by Amfexa in the afternoon. During my recent visit, my GP quickly attempted to attribute my concerns to fibromyalgia once again. Standing my ground, I insisted that this diagnosis was not satisfactory and requested a second opinion. This led him to agree to perform a series of blood tests, a stool analysis, an ECG, and a pelvic ultrasound. He mentioned that he would collaborate with specialists in rheumatology, neurology, and cardiology, but reiterated his belief that my symptoms were due to depression. I firmly know that’s incorrect—my situation is not rooted in depression. The blood work and stool test results returned normal, but the scheduled ECG and ultrasound have since been canceled. Furthermore, specialists in neurology and rheumatology refused my referral, while the cardiologist, who monitors a mild leaking valve, will see me for follow-up in three years. My GP’s only solution has been to prescribe antidepressants and seek further support from my psychiatrist for depression management. I have tried various antidepressants over the years, but I’m hesitant to try more, as I don’t believe I am depressed. I am simply exhausted and frustrated from battling a body that feels as though it’s failing me, especially when I feel unheard by my healthcare providers. My psychiatrist also leans toward burnout, depression, and anxiety and has been increasingly advocating for more antidepressants. I'm at a crossroads, unsure whether to address these concerns with my doctors again or simply return to managing daily life with the support of my family and friends. I would be willing to share my symptoms and test results, though the list is extensive. The symptom that worries me the most is a significant weight loss of 35kg since March, achieved without any changes in my lifestyle or diet. I also endure stomach discomfort and audible noises following meals, alongside chronic shaking, visual disturbances, and numbness or tingling in my limbs. I've always experienced unstable and painful joints that often dislocate, paired with debilitating fatigue that lays the groundwork for my fibro diagnosis. Any guidance on potential next steps or places to seek help would be invaluable. I reside in the UK and financial constraints limit my options for private healthcare, with the exception of maybe one initial consultation. Thank you for any assistance you can provide.
Answers (1)
6/22/2025, 11:20:38 PM
OpenHealth AI
It sounds like you're navigating a particularly challenging journey with your health, feeling unheard and frustrated as you search for answers. It’s commendable that you’ve been proactive in seeking clarity about your symptoms. Key points include your significant weight loss, gastrointestinal discomfort, neurological symptoms, and joint issues—all of which warrant thoughtful attention.
Explanation
Chronic unexplained symptoms can lead to feelings of exhaustion and helplessness, especially when you're constantly striving for recognition and validation from healthcare providers. Your request for further investigation is valid, especially given your family history and the potential overlap with conditions like Ehlers-Danlos Syndrome (EDS) or other autoimmune disorders. It’s concerning that you've experienced significant weight loss without changes in your diet or lifestyle, as that's often a red flag that requires investigation.
The previous tests being normal is useful information but does not rule out everything, and your ongoing symptoms, such as joint pain, sensitivity, and neurological disturbances, should still be looked into more deeply. It's essential to have a healthcare team that listens and collaborates on your case without dismissing your experiences.
Next Steps
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Document Your Symptoms: Continue to maintain a detailed log of your symptoms, context of their occurrence, and their severity. This can serve as a critical tool when discussing your health concerns with providers.
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Request an In-depth Review: Consider reaching out to your GP again with your documented symptoms and concerns emphasizing the significant weight loss and other worrying symptoms. Stress the impact these are having on your daily life and insist on a coordinated approach to investigate further.
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Explore a Referral to a Specialist Center: If your GP is unwilling or unable to refer you to a specialist, inquire about an interdisciplinary clinic or a university hospital specializing in chronic conditions or unexplained symptoms. In the UK, centers may exist that focus on conditions like EDS, fibromyalgia, or others.
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Consider Advocates or Support Groups: Look for chronic illness support groups, either in person or online. These can be valuable as they provide emotional support, coping strategies, and may connect you to providers who are more open-minded about complex cases.
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Psychosocial Support: While you may not identify with a diagnosis of depression, consider finding support through counseling or therapy focused on chronic illness. It can be beneficial for your emotional health as you navigate your symptoms and frustrations without labeling your experiences inaccurately.
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Dietary Consultation: The gastrointestinal symptoms you mentioned could also benefit from a review by a dietitian, who may help you identify any food sensitivities that could be contributing to your discomfort and assist with meal planning that supports weight stabilization.
Finally, consider the possibility of a fresh perspective or a new medical team. Sometimes, building a relationship with a different GP or specialist can lead to a more satisfying medical partnership. Remember, you deserve to have your symptoms taken seriously and to receive the care that you seek. Your health journey is important, and there is help available for you.
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