Tired of the Ongoing Struggle
Hello, I’m a 19-year-old female grappling with various health issues for approximately a year and a half. It all began two summers prior, in July 2024. My journey is quite complex, so I’ll do my best to summarize. Initially, I experienced severe joint pain, which quickly escalated to include cognitive difficulties like brain fog, overwhelming fatigue, migraines, and significant gastrointestinal problems such as constipation, diarrhea, severe cramping, nausea, and abdominal pain. Additionally, I have persistent jaw pain and insomnia that only resolves with the help of Benadryl, often causing me to stay awake until 4 or 5 in the morning. I've also encountered troubling seizure-like episodes that start with an overwhelming bout of exhaustion, followed by twitching eyelids, an inability to move, and sometimes a sensation where my tongue feels immobile, making it hard to breathe. Cold compresses on my head are the only remedy that seems to help. Emotionally, I’ve been in turmoil, dealing with feelings far worse than I’ve ever faced before. I’ve struggled with mental health since elementary school, even attempting self-harm with an overdose on Tylenol in March 2024, which catalyzed my commitment to recovery. Despite some progress, when these physical symptoms began, I became increasingly paranoid and delusional. I found myself yelling at my parents, feeling persistently emotional, anxious about going out, and easily irritated by sensory experiences. I've been officially diagnosed with depression and anxiety and have a history of anorexia and body dysmorphia. After turning 18, I was also diagnosed with Borderline Personality Disorder and PTSD. I've consulted numerous medical professionals, starting with my pediatrician and then branching out to a rheumatologist, two psychiatrists, two neurologists, three complete care specialists, four gastroenterologists, three alternative medicine practitioners, two experts on tick diseases, and four general practitioners, alongside three hospital visits. The feedback I consistently received seemed to boil down to two main theories: either my symptoms are psychological due to my mental health background or I’m fabricating my illness to draw attention. Some suggested I simply need to lose weight or adopt healthier eating habits. However, my weight increased because of the debilitating pain that severely restricted my mobility, rendering me nearly couch-bound throughout that summer. After some self-consciousness led to significant weight loss, I now weigh 145 pounds at a height of 5’2". Many medical professionals dismissed my discomfort as a stress response or ‘in my head,’ yet I continued to pursue answers. Despite their skepticism, I underwent extensive testing. My blood cell counts often show elevations in white and red blood cells, my C-reactive protein levels are consistently high, and recent tests indicated low T-3 uptake while T-3 levels were high. I have undergone various procedures, including a colonoscopy and endoscopy revealing 12 upper gastric ulcers attributed to Advil use for joint pain. MRIs and CT scans indicated stool backlogs, while a heart rate test and EEGs marked unusual events. Various diagnoses have emerged from all these consultations, including hypermobile Ehlers-Danlos Syndrome (hEDS) from the rheumatologist, Mast Cell Activation Syndrome (MCAS), dysautonomia, suspected Babesia, hypothyroidism, Irritable Bowel Syndrome (IBS), and an unofficial label of Functional Neurological Disorder (FND). The neurologist hinted that the MRI results might not be significant. This constant influx of differing opinions has left me feeling overwhelmed and confused about what is genuinely occurring with my health. My inability to sleep, my emotional volatility ruining my mental health recovery, the persistent bloating in my stomach, a fear of food, and constant aching from the smallest movements have all become unbearable. I yearn for a semblance of normalcy, especially at my age where I should be starting college. The dismissal of my concerns by medical professionals—who imply I am exaggerating or fabricating symptoms—deeply frustrates me. Why would I ever want to simulate pain that leads to isolation and loneliness? I assure you, my pain is real. My diet is already quite healthy, consisting mostly of water, fruits, and vegetables, and I limit my intake of sugars and snacks. I've made strides toward increased physical activity when possible, yet even simple tasks can be excruciating. I’m wary of caffeine, energy drinks, and excess sugar. Supplements like magnesium and vitamins, combined with Prilosec and Pepsid for my ulcers, constitute my current regimen. I am desperate for answers. Is there an underlying issue that still needs to be uncovered? Or if my conditions are accurate, can someone help articulate how my symptoms align with these diagnoses? My daily pain is debilitating and far from normal, and I’m not fabricating anything. I also need assistance with my mental health. How can I pursue college when I struggle with memory and emotional stability? I feel utterly drained. In summary: A 19-year-old female with diagnoses of hEDS, MCAS, dysautonomia, hypothyroidism, potential Babesia, IBS, and unofficial FND seeks clarity on her chronic symptoms of body, joint, and stomach pain, migraines, seizure-like episodes, emotional instability, and insomnia. Despite numerous tests showing abnormalities, medical professionals are reluctant to further investigate. It's essential to understand if there’s more to uncover or clarify how my symptoms correlate with my current diagnoses, as living with this pain is exhausting and isolating. I hope for guidance and support.
Answers (1)
2/4/2026, 4:31:09 PM
OpenHealth AI
Thank you for sharing your detailed health journey. It sounds incredibly challenging, and I want to acknowledge your frustration and exhaustion in seeking answers and relief. Let's take a closer look at your symptoms and consider some practical steps you can take to address your challenges while navigating your current conditions.
Key Points:
- Complex Symptoms: Your symptoms appear to stem from various interconnected diagnoses, which may affect each other.
- Mental Health: Your emotional struggles are valid and require attention to support your overall health.
- Persistent Advocacy: It’s crucial to keep advocating for yourself in the healthcare system.
Explanation:
You’re dealing with multiple health conditions, including hypermobile Ehlers-Danlos Syndrome (hEDS), Mast Cell Activation Syndrome (MCAS), dysautonomia, hypothyroidism, IBS, and potential Functional Neurological Disorder (FND). Each of these can contribute to the joint pain, fatigue, gastrointestinal symptoms, and emotional instability you’re experiencing.
Given your history of feeling dismissed by professionals, it’s essential to approach your care with a comprehensive plan that addresses both your physical and mental health. It's common for individuals with chronic illnesses to feel stressed or discouraged, especially when symptoms are not fully understood or validated.
Next Steps:
-
Symptom Monitoring: Keep a daily journal of your symptoms, noting any triggers, intensity levels, and the impact on your daily life. This can help you identify patterns and can be valuable information for healthcare providers.
-
Holistic Care Team: Explore building a collaborative team that includes a primary care doctor familiar with chronic illness, a mental health professional (such as a therapist specialized in chronic illness), and perhaps a reputable pain management specialist or a specialist in functional medicine. Each member can bring insights that might align with your conditions.
-
Nutrition and Lifestyle: Since you are aware of your diet, consider consulting with a registered dietitian familiar with MCAS and IBS to help you navigate foods that might exacerbate your symptoms versus those that can provide relief. Staying on a consistent eating schedule may also help manage gastrointestinal symptoms.
-
Mental Health Support: Given your history of mental health challenges, connecting with a mental health professional who understands chronic illness can provide you with strategies to cope with anxiety, depression, and emotional instability. Techniques like cognitive behavioral therapy (CBT) can help in managing how you respond to stressors.
-
Sleep Hygiene: Since sleep is a significant issue, establishing a consistent bedtime routine can assist in improving sleep quality. Limit screen time before bed, and consider calming practices such as mindfulness or gentle stretching.
-
Physical Therapy: A physical therapist experienced with hEDS can help you explore safe exercises that improve mobility and reduce pain without overexerting yourself.
-
Emergency Plan: With your seizure-like episodes and severe fatigue, it is essential to have an emergency plan in place. Consult with a neurologist to ensure that these episodes are monitored and managed appropriately.
-
Patient Advocacy: Never hesitate to seek a second opinion if you feel your concerns aren’t being taken seriously. You deserve compassionate and comprehensive care.
Final Thoughts:
It’s admirable that you have pursued your health diligently, and I genuinely hope these steps can provide you with a clearer path forward. Your symptoms are real, and your quest for understanding and relief is valid. Please prioritize your well-being and seek the support you deserve as you navigate this challenging time. Let me know if you need further assistance or clarification on any aspect.
Related Questions
Could a TSH Level of 0.67 Indicate Hashimoto’s Disease?
Greetings everyone, I’m a 36-year-old female residing in the United States, standing at 173 cm and weighing 388 lbs. I have type 2 diabetes, obstructive sleep apnea (OSA), carpal tunnel syndrome, and acid reflux. Currently, I am prescribed Metformin, Cymbalta, Seroquel, and Pantoprazole. I use a CPAP machine each night to aid my sleep. In October 2025, I underwent a blood test, and the results were largely satisfactory, although my cholesterol levels were slightly elevated. My A1C level was recorded at 5.9. Notably, my thyroid-stimulating hormone (TSH) level was 0.67. Despite the CPAP usage, I consistently feel drained, as if I haven’t rested at all. The device reports that my usage is effective, and all indications seem normal from its readings. My healthcare provider has recommended a comprehensive follow-up test for my thyroid function. In my family, Hashimoto's disease runs in the genes; both my grandmother and her daughters, including my mother and her sister, have been diagnosed with it. With my TSH level at 0.67, is it possible that I might also have Hashimoto’s?
[23M] I Fear I Might Have Lymphoma But Doctors Disagree
My experience with swollen lymph nodes began over two years ago. Initially, I noticed some in my neck and groin, but there were infections present which could account for their appearance. To be cautious, I underwent numerous tests, including various ultrasounds and an extensive array of blood work, such as: * Complete blood count * Beta-2 microglobulin * ESR * LDH * CRP * Urea * Protein electrophoresis …and much more (truly). Fortunately, the results indicated nothing alarming; all readings were within normal ranges. However, as time went on, additional lymph nodes appeared in distinct groups - infraclavicular, supraclavicular, axillary, and more in both the neck and groin. Some of these had explanations related to other conditions, but others seem inexplicable, particularly those in the infraclavicular and axillary regions. Over this period, I underwent all those tests again, alongside multiple chest CT scans (four within approximately a year and a half) and a head CT scan for a separate concern. All results came back clear again. Yet, I remain puzzled. The occurrence of new lymph nodes continues; just last week, I discovered one in the epitrochlear area (above the elbow). It feels somewhat firm and tender, with no discernible reason for its presence. The other lymph nodes appear stable, and I can't ascertain if they've enlarged—if they have, any growth hasn't been significant enough for me to notice. There is one node in my groin that I believe has increased in width, although not in length (initially measuring about 2.3 cm x 0.3 cm, it now seems to be around 2.3 cm x 0.7 cm). I’m not sure if it’s worth mentioning, but I haven’t experienced symptoms like unexplained weight loss, night sweats, or fever. Overall, my health has been fairly stable. I've consulted with several hematologist-oncologists, yet none have deemed a biopsy necessary, which leaves me feeling quite frustrated. For at least the past year and a half, my thoughts fixate on the possibility of having a serious illness. The uncertainty weighs heavily on me, disrupting my life and eroding my peace of mind. I'd appreciate any guidance you can offer.
Concerns About Bone Marrow Donation: My Story and Questions
At 23 years old, I find myself grappling with apprehension regarding the prospect of donating bone marrow. Here are some relevant facts about my health: - My Body Mass Index (BMI) is 20.1. - As a teenager, I was diagnosed with a benign systolic murmur characterized as "III/VI" at the left sternal border, which was deemed innocent. I was cleared for any anesthesia-related procedures, including dental work. - I have been informed that I have a dilated inferior vena cava (IVC). - When I was seven, I abruptly ceased walking due to a growth on my leg and hip bone; it was initially misdiagnosed as cancer but subsided on its own after about three months, allowing me to walk once again. I find it challenging to recall the finer points of that period as I was so young and lack access to medical records from that time. - My heart rate tends to run high, often exceeding 100 beats per minute during doctor's visits. I believe this spike is linked to my anxiety. I recently ceased taking Adderall, which I had used previously, so I suspect that my quitting, alongside my vaping addiction, contributes to my elevated heart rate. - I engage in exercise approximately five times a week, mainly focusing on running, and maintain a nutritious and well-balanced diet. - Although I have been vaping for eight years (which I fully acknowledge isn’t ideal at my age), my habit was intermittently sporadic in the first four years. However, I have consistently vaped daily for the past four years. - I experienced a muscle injury in my back last October, which prompted a doctor visit due to persistent and dull pain, although I am recovering, except for some ongoing discomfort in my hip. This hip pain is a daily struggle; it intensifies during prolonged running sessions and when lying on my side for even short periods. This issue has persisted for years but appears to have escalated recently. - My blood pressure readings generally fall within a typical range, around 120/70. During college, I swabbed my cheek and joined the stem cell donor registry without much thought, assuming I would never be contacted. A short time ago, I received news that I was a match for a 19-year-old female diagnosed with acute myeloid leukemia (AML) who is in need of a bone marrow transplant. Naturally, I wish to assist this young woman, but the idea of undergoing anesthesia makes me incredibly anxious. I have never faced any surgical procedures before. My fears include an elevated heart rate leading to complications, potential damage to my hips, or worse, not waking up after the anesthesia. I also have an upcoming flight which lasts around nine hours that I must take shortly after the procedure, and I am worried about the risk of developing a clot during the flight or experiencing significant discomfort while seated for that duration. Regrettably, my case coordinator hasn't provided much support, often responding with vague answers like "it depends" to my queries. I’m under a time constraint, with only about a week to make my decision, which is the limited window available for both my schedule and that of the patient. I feel a sense of responsibility to avoid placing her through unnecessary pre-transplant preparations if I am not going to go through with it. Here are my key questions: - Does my elevated heart rate pose a risk when undergoing general anesthesia? - How does peripheral blood stem cell (PBSC) donation differ in comparison to traditional bone marrow donation? Is one method preferable to the other? - Is the survival rate for recipients higher when receiving bone marrow compared to PBSC? - I have fears surrounding not waking up or facing complications during the procedure; what factors typically contribute to such risks in younger individuals? - Could the act of donating bone marrow aggravate my existing hip issues? Does it heighten the chances that I might need a hip replacement or any other medical intervention in the future? I'm reaching out for clarity on these matters as I consider my next steps.
Hello everyone, I’m a 20M Caucasian
To kick things off, I stand at 6 feet tall and weigh roughly 185 pounds. I’m not currently on any medications, despite my mother’s belief that I perhaps ought to be. Overall, I enjoy a fairly happy and healthy lifestyle, though there is one concern that bothers me. Throughout the day, I unexpectedly experience severe migraines that strike with little warning. These episodes bring about intense, pulsating pain. While my situation isn’t unique—my mother also endures similar headaches—there are additional symptoms that accompany this condition. During these migraine attacks, I notice a significant drop in my blood pressure, plummeting from approximately 130/80 mmHg to about 100/60 mmHg. These sudden migraines typically last for a few hours before subsiding, at which point my blood pressure inexplicably returns to its normal levels. Although my blood pressure hasn’t dipped into any ranges considered 'medically concerning,' I’ve never sought medical advice for this issue. I thought perhaps sharing here could provide some insights or answers.
Persistent Wrist Pain with Unusual Bump on Right Wrist
I am an 18-year-old male, approximately 182 cm tall and weighing around 90 kg. For several months now, specifically since late November of last year, I have been experiencing chronic pain in both of my wrists, which significantly hampers my ability to use my computer. As I am left-handed, the discomfort in my left wrist particularly intensifies during more strenuous tasks. To address this issue, I have consulted two separate specialists in traumatology and even underwent a muscular ultrasound. The results suggested a potential synovitis, yet despite these insights, the pain has remained largely unchanged. I have made considerable adjustments to my routine by drastically reducing my time on the computer, reassessing my sitting posture, and even contemplating the purchase of a new chair. It’s worth mentioning that I have used the same chair for four years without previous problems. Additionally, I have engaged in Kinesiology exercises for some time, but unfortunately, I have not noticed any improvement. I am reaching out to see if anyone has insights or alternative suggestions regarding my condition. I feel as though I am running out of options.