OpenHealth Q&A

Persistent Neck Swelling and Unresolved Symptoms

I am a 29-year-old woman who smokes, and I have been enduring a variety of troubling symptoms for the last six months. During this period, I’ve frequently visited doctors and undergone numerous blood tests, including TSH (due to my mother's history of hyperthyroidism), ANA, EBV, HIV, Hepatitis A, B, and C, cholesterol, serum folate, ferritin, magnesium, calcium, and B12, among others. My general practitioner informed me that there are no further tests available to me. Apart from a positive result for EBV, indicating a past infection, all other tests returned normal results. Initially, doctors diagnosed me with glandular fever, but that was half a year ago and my condition has only deteriorated since then. In an effort to advocate for myself, I reached out to my doctor’s office, requesting more thorough investigations. They responded by scheduling me a lengthy appointment; however, the physician I met with dismissed my concerns, noting "no neck nods" in my file, implying I was exaggerating my issues. He recommended that I discontinue my mini contraceptive pill, ADHD medication, engage in daily neck exercises, and take walks. His condescending attitude left me feeling overlooked and frustrated. Fortunately, I later consulted a nurse practitioner who agreed to refer me to a Chronic Fatigue Syndrome clinic, asserting that they had exhausted their options. To date, I have not undergone any ultrasounds or imaging tests. I have a telemedicine appointment scheduled for tomorrow, but I plan to insist on an in-person visit since a phone consultation cannot reveal the visible problems with my swollen and tight neck. Each visit seems to turn into a battle to be acknowledged and taken seriously. The ongoing dismissal from medical professionals and the lack of understanding from my family has become mentally exhausting. There have been moments when I contemplated giving up, feeling as though I’m being relentlessly worn down while already grappling with significant physical discomfort. Consequently, my mental health has noticeably deteriorated. The pushback from medical personnel has led me to doubt my own reality, even questioning if I am spiraling into a sort of health-induced delusion. I miss the joyful and vivacious person I used to be. Why would anyone choose to endure frequent doctor visits or live with debilitating limitations? I've continually faced accusations of possessing health anxiety, despite not having any imaging results to dismiss my symptoms. I desperately yearn to reclaim my former life. My condition reached a point where I had to resign from my job, as I could no longer manage the physical demands. Daily, I feel unwell, where even basic chores can leave me bedridden for days as I recover. I’ve grown weary of this endless cycle, depleted by the experience of being told I’m fine, even though I am the one living this reality. The flood of emotions and frustration is overwhelming. My ongoing symptoms include muscle and joint pain that worsens with activity, persistent daily headaches, severe fatigue, neck pain, mild fever, skin rashes, recurring infections, swollen lymph nodes, and pain in the right groin lymph node. Recently, I’ve noticed additional troubling symptoms like intermittent chest burning, increased neck swelling and tightness, a pulling sensation beneath the skin, and difficulty breathing with minimal exertion. These issues seem to flare up particularly at night. I suspect I might have developed a small bump on my collarbone, but I’m unsure. I would greatly appreciate any suggestions or insights on this matter; all are welcome as I seek answers and relief.

Answers (1)

7/31/2025, 9:40:51 PM

OpenHealth AI

I'm truly sorry to hear about the challenges you're facing with your health and the frustrations that have come from seeking care. It sounds incredibly overwhelming to deal with persistent symptoms while feeling dismissed by medical professionals. Let's focus on the symptoms you are experiencing and the next steps you can take to advocate for your health.

Main Points:

1. You are experiencing a variety of concerning symptoms that have not been adequately addressed despite consulting multiple healthcare providers.
2. It's important to pursue further evaluation, particularly imaging tests, to better understand what may be causing your neck swelling and other symptoms.
3. You should seek support for both your physical and mental health during this challenging time.

Explanation:

Your symptoms, including persistent neck swelling, fatigue, pain, and rashes, could indicate an underlying condition that might range from autoimmune disorders to infections or other chronic health issues. The positive EBV result suggests a past infection but doesn’t explain the entirety of your symptoms, which warrant further investigation, particularly since you are also experiencing new symptoms like chest burning and difficulty breathing.

It's understandable to feel frustrated and anxious, especially when medical consultations don’t yield the support and acknowledgment you need. Remember that your feelings and experiences are valid, and it's essential to find healthcare professionals who will take your concerns seriously.

Next Steps:

1. Telemedicine Appointment: Attend your scheduled telemedicine appointment tomorrow. Be prepared to clearly articulate your symptoms, their impact on your life, and your request for more in-depth tests. Consider asking specifically for:

   • Imaging tests (like ultrasound or CT scan) to evaluate your neck swelling and check for any abnormalities.
   • Referrals to specialists (like a rheumatologist or an infectious disease expert) who can provide additional insights based on your symptoms.

2. Document Your Symptoms: Keep a daily journal of your symptoms, noting their severity, timing, and any triggers. This can help health providers better understand your condition and may provide you with reassurance about the reality of your experiences.

3. Mental Health Support: Seek support for your mental health, as dealing with chronic symptoms can take a significant toll. Consider:

   • Talking to a therapist who has experience with chronic illness.
   • Joining support groups for individuals with chronic fatigue or autoimmune conditions, either online or in-person.

4. Prepare for the Future:

   • If you don’t feel heard after your telemedicine appointment, consider seeking out a new primary care physician or specialist who specializes in chronic conditions and values patient advocacy.
   • Explore lifestyle changes that might support your well-being, such as gentle exercise, stress reduction techniques (like mindfulness or meditation), and maintaining a balanced diet, even if daily activities feel challenging.

5. Local Resources: If you have a chronic fatigue syndrome clinic referral, follow through with it and express all of your symptoms and concerns. They may have more tailored resources and testing options available.

It's important to remain proactive about your health and continue seeking care that resonates with your experiences. You're not alone in this, and there are pathways to seeking relief and regaining your quality of life. Take care, and I wish you strength and support on this journey.