OpenHealth Q&A

Seeking Support for Unexplained Symptoms Alongside FND

Hello everyone, I appreciate your patience; this will take a bit of time to explain... I am a 22-year-old female who has been battling mental health issues and epilepsy since I turned 17. For the first time, however, I started to see a positive shift in my life. I experienced joy, felt a good level of health, and finally landed my first job after years of being unable to work. Even with these improvements, I have continued to deal with persistent challenges: - Chronic tiredness, perhaps only 25% to 50% of the energy levels I had as a child. - Difficulty standing for long stretches, as my calves would start to ache (which others attributed to my lack of interest in sports). - Frequent urination if I consumed enough liquids—leading me to reduce my water intake to manage it. Whenever I approached my physician regarding these concerns, I was typically told that it was anxiety related or simply a result of my mental health background. Consequently, like many, I decided to persevere and simply endure. Just prior to a scheduled holiday, I fell ill. Although I'm unsure if it was COVID-19, the aftermath left me profoundly fatigued. While away, I began to notice a return of subtle symptoms typical of my epilepsy. My neurologist has frequently suggested that stress or my medications might be to blame, so I brushed them aside. On vacation, my friend began to suffer from spasm attacks during the evenings. It was then I unknowingly started experiencing similar occurrences—though mine felt like faint jolts akin to epilepsy. I attributed it to medication side effects. Once back home, I spent two weeks doing renovations and was exposed to various chemicals like paint and glue remover. As my symptoms escalated (likely linked to the toxins, though I wanted to mention every factor), I observed a daily decline, especially worsening in the late hours. One particularly rough night led me to seek medical attention. After being prescribed more medication, I found myself returning the next day, where I was given anti-anxiety medication. By this point, the jolts were impacting my respiration, making me feel as though I was running a marathon while standing still. The following day, I ended up in the emergency room, where I experienced full-body tremors. My legs felt weak and empty, reminiscent of post-marathon fatigue. I was utterly drained. Despite undergoing an EEG, the results were once again unremarkable (as has often been the case when I’m not on my medication). The emergency doctor diagnosed me with Functional Neurological Disorder (FND) and recommended hospitalization for further observation. By the next day, I could no longer walk; my legs would collapse under me. I remained in the hospital for a month, where I received pain management and was taught how to navigate standing and climbing stairs using my hands. This was no easy feat, but I am determined. Once I was discharged, I stayed with someone who provided care. Within two weeks, I managed to relearn how to walk small distances within my home. However, new issues arose: I began to experience visual disturbances. Colors appeared dull, with white no longer appearing white but instead resembling a “static or pixelated TV screen.” The eye doctor found nothing abnormal. An MRI was scheduled, which also returned clear results. Yet again, I was informed: "It’s FND, and there’s nothing further to offer at this moment except physical therapy (which has been a blessing)." Unfortunately, the waiting list for treatment is currently closed and might not open until 2026, followed by an additional year of waiting. Clearly, that’s not an ideal situation, and this is the sole facility in the nation equipped to assist with FND. Here’s the aspect that continues to trouble me: the overwhelming fatigue. It feels as if I am running on merely 10% of the energy I possessed in childhood. I do not refer to typical adult tiredness, but rather an all-consuming fatigue that feels like my body is constantly on the verge of collapse. While I acknowledge the FND diagnosis and see some merit in it—perhaps my body is still learning to feel secure or content—and the full-body shaking has ceased, which is a positive development, I have this nagging sensation that something deeper is at play. Has anyone else navigated a scenario involving FND alongside additional unexplained symptoms, such as: - Frequent urination without excessive liquid consumption? - Visual changes lacking a clear origin? - Profound fatigue that mirrors that of an elderly person? I would be immensely grateful for any insights, shared stories, or guidance. Thank you for taking the time to read my experience.

Answers (1)

6/26/2025, 9:20:53 PM

OpenHealth AI

Thank you for sharing your experience. I understand how overwhelming it can be to navigate persistent, unexplained symptoms alongside a diagnosis like Functional Neurological Disorder (FND). Your symptoms, including profound fatigue, visual changes, and frequent urination, can indeed feel frustrating, especially when their origins remain unclear.

Summary of Key Points:

• Your symptoms may be interconnected with your current FND diagnosis.
• Exhaustion you’re feeling could also be a sign of managing multiple conditions.
• There’s a need to explore unexplained symptoms further while focusing on managing your fatigue.

Explanation:

Functional Neurological Disorder can sometimes contribute to fatigue and other physical symptoms because of how the brain and nervous system communicate. Additionally, various factors, including stress, anxiety, environmental toxins, and even medication, can exacerbate your fatigue and other unexplained symptoms. It is important to consider how these might interplay with each other.

Symptoms such as:

• Frequent Urination: This may arise from a variety of causes, including anxiety, certain medications, or other health conditions. It might also be worth monitoring your fluid consumption more closely and considering the timing of your water intake.
• Visual Disturbances: If your eye examinations returned normal results, it could be a neurological symptom linked to FND or stress-related visual disturbances.
• Profound Fatigue: Persistent fatigue can stem from several underlying health issues (including anemia, hypothyroidism, or chronic fatigue syndrome) that might not have been explored yet, especially since exhaustion can mimic conditions typical in older individuals.

Next Steps:

1. Keep a Detailed Symptom Diary: Note down your fatigue levels, urination patterns, and visual changes. This information can help any healthcare provider understand your progression and potential triggers.

2. Hydration and Diet: While you have reduced your water intake to manage urination, ensure you are hydrating adequately and eating balanced meals to support overall health. Evaluate whether you’re consuming enough electrolytes, as low levels can contribute to fatigue.

3. Pace Yourself & Energy Management: Focus on small, manageable tasks and build your activity levels gradually to conserve energy. This can help prevent overexertion while still promoting gradual improvement.

4. Explore Additional Support Options: Since you mentioned the waiting list for specialized care is long, consider connecting with support groups or communities online that focus on FND or the symptoms you experience. They might offer emotional support and shared experiences that can be beneficial.

5. Discuss Further Testing: If fatigue persists despite intervention, consider discussing the possibility of additional tests with your primary care physician. Tests might include thyroid function tests or screening for autoimmune disorders, given your symptoms and medical history.

6. Therapies Available: While waiting for formal physical therapy, look into accessible resources like online physical therapy programs or guided exercises can sometimes provide interim support.

Always ensure you follow up with healthcare professionals about any new or concerning symptoms and advocate for thorough evaluations if you feel something might be missed. Trust in your resilience, and know that support is possible. If you need more guidance, feel free to reach out again.