OpenHealth Q&A

Struggling with Oral Pain for Over Two Years: Seeking Help

For the past two and a half years, I've been grappling with extreme discomfort in my mouth and throat, which I initially thought was merely dryness. However, in recent months, I've come to realize that what I'm experiencing is actual pain rather than just a lack of moisture. My tongue often feels swollen, yet it's not inflamed in appearance, as if it has been scalded by something hot. Initially, the pain was localized in my throat for about eight or nine months before it gradually extended to encompass my entire mouth. Now, my entire tongue is affected by the discomfort. When I consulted with my ENT specialist, they were taken aback by the small size of my throat but didn't find any signs of swelling. I maintain excellent oral hygiene, which leaves me bewildered as to what might be causing this issue. My lips show no signs of problems, such as cracking. I've sought opinions from various medical professionals including my primary care physician, an ENT, a pulmonologist, and an allergy specialist. My nights are plagued by waking up 10-15 times seeking relief in the form of water, which has contributed to significant weight gain—shedding pounds has become a difficult challenge. The persistent fatigue and irritability are taking a toll, and I feel desperate for sleep, which is why I’m reaching out on this forum for assistance. Prior to the onset of this condition, I was in good health. I relocated to New Mexico from New England, started living with my boyfriend, and after three months, we moved to Southern California. During this period, we adopted a dog (which I had for five years) and a cat (who I had for four years, but she was previously an outdoor cat in New England). I have allergies to both species. Shortly after moving to New Mexico, my dog began showing unusual behavior, and by the time we reached California, he was vomiting frequently. Tragically, he had developed cancer, and we had to make the difficult decision to put him down six months ago. Now, my cat is exhibiting similar concerning symptoms. I mention this because I believe it may be relevant, or it may not be pertaining to my current health issues. I began the process of allergy testing, but an insurance change prevented me from completing it after my initial prick test. Fortunately, I found out that I’m not allergic to common allergens like grasses, trees, or pollens. I’ve tried switching my toothpaste to eliminate chemicals, but to no avail. Additionally, I opted to drink only bottled Poland Springs water, yet there has been no improvement. I typically process alcohol quite well and seldom experience hangovers, but wine gives me trouble, which has led me to significantly reduce my consumption to about once a month. Certain foods like onions exacerbate the dryness in my mouth. While I do still own a cat (from before this health ordeal began), I am allergic to both cats and dogs, which complicates my situation. **Quick facts about me: Female, 29, previously used albuterol and symbicort inhalers, had a recently expired Kylena IUD, take an OLLI women's multivitamin, and occasionally consume cannabis gummies.** - I have asthma (previously undergone FeNO and spirometry tests). - I’m not a mouth-breather, not even while sleeping. - A sleep study showed no signs of sleep apnea. - I experience anxiety and depression, with significant mood swings before my menstrual cycle. - My iron levels are on the lower end of normal (50 mcg/dL), with an absorption rate of 18%. It fluctuates but never exceeds that value. - The rheumatoid factor is less than 13. - Thyroid-stimulating hormone levels are 2.648 mcIU/mL. - Cortisol levels appear elevated. - My CBC with differential results are normal. - The metabolic panel returned normal results. - I tested negative for Sjögren's syndrome, H. pylori, hepatitis C/B, HIV, and any STIs. - My dentist found nothing alarming. - White blood cell and red blood cell counts are completely normal. After changing insurance, my previous healthcare providers were no longer available. Once we returned to New England, my asthma has improved significantly, and I stopped using my inhalers to determine if that would change anything—unfortunately, it has not. My tongue does not have a white coating, nor do I have any sores. At the conclusion of all my tests, the doctors suggested that I might simply be experiencing some form of sensitivity, possibly neurological in nature, with no further options for treatment available. I sense that my hormones are not functioning as they should since I suffer a significant emotional drop each month before menstruation, I gain weight effortlessly, and I’m experiencing adult acne, especially along my chin, which is frustrating due to the excess hair I need to remove. While I could manage these issues, the persistent burning sensation in my mouth at night is overwhelming. I’m at my wits’ end and worried about my ability to cope if I don’t find a solution for my sleep issues soon. I feel like I’m in a continuous state of unrest, frequently waking to hydrate, making it impossible to achieve any level of deep sleep. I remain acutely aware of my surroundings, waking up even more fatigued than before I went to bed. Lying in bed has turned into the most drawn-out segment of my day. If anyone has suggestions—dietary changes, remedies, or anything else—I would truly appreciate your input. Thank you very much for your help!

Answers (1)

3/19/2025, 12:40:53 PM

OpenHealth AI

I understand you're experiencing significant discomfort in your mouth and throat over the past two and a half years, which is affecting your sleep and overall well-being. This situation can be incredibly frustrating and disheartening, especially after seeing multiple specialists without finding relief. It sounds like you're seeking practical solutions to alleviate pain and improve your sleep quality. Here are some focused strategies that may help:

Explanation

Your symptoms suggest issues that could involve a range of factors, including dryness, sensitivity, or even potential hormonal fluctuations. The fact that you experience pain and swelling in your mouth, yet no visible signs of inflammation or infection, points to a possible underlying sensitivity or irritation, possibly exacerbated by allergies or other environmental factors. Since you've noted improvement in your asthma after relocating yet still face mouth discomfort, it may further indicate that environmental triggers could contribute to your symptoms.

Next Steps

Here’s a prioritized list of steps you can take:

1. Hydration and Humidification:

   • Ensure you drink plenty of fluids throughout the day. Aim for at least 64 ounces of water daily, but adjust based on your activity level and climate.
   • Consider using a humidifier at night while you sleep. This can help combat dryness in your throat and mouth.

2. Dietary Adjustments:

   • Keep a food diary to identify potential trigger foods that exacerbate your symptoms. Since onions worsen your dryness, consider removing other potentially irritating foods like spicy or acidic items and observing any changes.
   • Incorporate soft foods to reduce friction in your mouth—think soups, smoothies, and yogurt.

3. Oral Care Routine:

   • Use a mild, alcohol-free mouthwash to help keep your mouth moist and reduce potential irritants.
   • Try using a saliva substitute or oral moisturizers available at pharmacies designed to alleviate dry mouth symptoms.

4. Monitor Allergens:

   • Since you mentioned allergies to pets, consider minimizing exposure to your cat as a potential factor. Even though you're not currently considering giving up your pet, monitor any correlation with your symptoms when you're near her.
   • If you can, reduce exposure to common allergens that were found during previous tests or suspect environmental factors.

5. Consulting a Specialist:

   • Since multiple tests have ruled out many conditions, consider revisiting an allergist or seeking an oral specialist who specializes in chronic pain syndromes or burning mouth syndrome for further assessment.
   • Discuss potential neuropathic pain management solutions or topical treatments with a healthcare provider that may help ease your symptoms.

6. Stress and Mental Health:

   • Managing anxiety and mood swings through mindfulness, relaxation techniques, or talking with a mental health professional can be beneficial. This could also enhance sleep quality over time.
   • Regular physical activity, even light exercise like walking, can help manage weight and improve mood.

7. Sleep Hygiene:

   • Adopt good sleep practices such as a consistent sleep schedule, limiting screen time before bed, and creating a restful sleep environment, which may help improve your sleep quality.

Please remember, it's important to take one step at a time and monitor how each change impacts your symptoms. If your symptoms continue or worsen, reaching out for further medical evaluation will be crucial. You deserve to find relief and improve your quality of life—do not hesitate to seek the support you need. If you have any further questions or need additional information, feel free to ask!