OpenHealth Q&A

A Lingering and Unexplainable Illness

I’m a 25-year-old woman from the UK. I don’t smoke, consume just about one pint of alcohol weekly, and maintain a relatively healthy diet. Standing at 5’7”, I have been intermittently using codeine to alleviate persistent burning sensations throughout my body. My health started to decline unexpectedly back in March. Initially, I experienced tinnitus, which was soon followed by dizziness and several episodes of vomiting. A week later, I noticed complete numbness on one side of my face. Shortly after, I developed a sore throat and felt overwhelmingly fatigued, akin to having the flu. It took over a month for these distressing symptoms to fade. There was a period during which vertigo made it nearly impossible to walk; I felt miserable. Health professionals first prescribed a nasal spray, suspecting sinusitis, but it proved ineffective. Subsequently, I was treated with two courses of amoxicillin, based on one doctor's belief in a potential bacterial infection. Not long after these episodes, I began experiencing eye floaters, a phenomenon I had never encountered before. An appointment with an optician involved OCT imaging and slit lamp exams, which showed no damage to my eyes. The optometrist suggested that my symptoms might have a neurological basis. By May, I began suffering from vulvodynia, a painful burning sensation in the genital area, which I initially attributed to a yeast infection. However, extensive testing for sexually transmitted infections and other bacterial conditions yielded negative results. Thankfully, I have been able to manage this discomfort with the use of estrogel and probiotics. Around this time, I began to experience sporadic pin-and-needle sensations, but I didn't think much of it. In late June, shortly after returning from a vacation that involved snow sports and beach activities, I faced a troubling episode where my hands and feet became intensely hot. The pain was so severe that walking became difficult, and even now, I struggle to stand for more than ten minutes. To aid my mobility, my parents provided me with a wheelchair, which I now use to leave the house. This burning sensation has also extended to my back and neck, becoming more pronounced during the night but not persisting throughout the day. I suspect I may be experiencing small fiber neuropathy. Additionally, I’ve noticed an increase in sleep duration, typically from 9 p.m. to 9 a.m., which is unusual for me. Headaches have also become more frequent, likely resulting from stress and sensory overload. I have undergone routine blood tests, all of which returned normal results. A celiac disease test was negative, and while my blood glucose levels were at the higher end of normal, they did not classify me as pre-diabetic. My urine analysis showed normal ketone levels, and a brain MRI revealed no abnormalities. However, the onset of these troublesome symptoms coincided with my initial illness. I have considered the possibility of long COVID, but I have not experienced any loss of taste or smell, and while I may feel slightly cognitive fog, it’s challenging to determine since my mind is occupied with my ongoing struggles. Currently, I am enduring significant pain and feel quite frightened. The prospect of small fiber neuropathy lacks a cure, and although I have been prescribed amitriptyline, I am hesitant about its potential to exacerbate my tinnitus. This situation has profoundly impacted my life—I've been unable to work for a month, my graduation is delayed, and it’s straining my marriage. I feel lost, unsure of where to seek help or what course of action to take. It seems likely that this is a post-viral issue, but can such an illness truly lead to these myriad complications? Is recovery a possibility?

Answers (1)

7/13/2025, 12:02:19 PM

OpenHealth AI

I'm sorry to hear about your difficult experiences; it sounds incredibly challenging to navigate these symptoms. With your complex history, it’s understandable to feel lost, but there are steps you can take to help manage your situation and work towards recovery.

Main Points:

• Your symptoms suggest a possible post-viral syndrome, and addressing them holistically is essential.
• It’s important to prioritize symptom management while seeking a clearer diagnosis.

Explanation:

You’ve experienced a range of symptoms—tinnitus, dizziness, facial numbness, vulvodynia, pin-and-needle sensations, and now burning pain. Given that these issues began after an illness, it is plausible that your body is experiencing a post-viral response. This can happen when the immune system has been activated and may take time to stabilize. Symptoms like burning sensations and fatigue could indeed relate to conditions such as small fiber neuropathy, which can also arise after viral infections.

While your tests for specific diseases are normal, it's essential to continue looking for potential underlying causes or ongoing issues. Anxiety and stress can amplify these symptoms, making it vital to address your mental well-being alongside the physical symptoms.

Next Steps:

1. Document Your Symptoms: Keep a daily diary of your symptoms, noting their intensity and any triggers you observe. This information can help your healthcare provider understand your condition better.

2. Pain Management: Since burning sensations are affecting your mobility and comfort, consider discussing with your doctor alternative pain management strategies, including lower doses of amitriptyline if necessary, or exploring non-medication options like physical therapy, occupational therapy, or cognitive-behavioral strategies.

3. Holistic Therapies: Techniques such as mindfulness, meditation, or gentle yoga may help manage stress and improve your overall well-being. These can have a positive impact on both physical symptoms and emotional health.

4. Consult a Specialist: Consider seeking a referral to a neurologist or a pain specialist. Given your symptoms, a comprehensive evaluation may identify treatment options specific to neuropathic pain or help assess any post-viral syndromes further.

5. Support System: Engage with support groups, either in-person or online, specifically for individuals with chronic pain or post-viral syndromes. Connecting with others facing similar challenges can provide emotional support and practical advice.

6. Nutritional Support: A balanced diet rich in anti-inflammatory foods may support recovery. Speak with a dietitian if this is something you'd like to explore further.

It's understandable to feel frightened in this situation, but many individuals do recover from complex post-viral symptoms with proper support and management. Stay connected with your healthcare team, and remember you do not have to face this alone. Be gentle with yourself as you navigate this journey.