Understanding the Challenges of Diagnosing Fibromyalgia in Children
At 14 years old, standing at 5'4" and weighing approximately 110 pounds, I’ve been grappling with persistent discomfort since the age of six. Initially, my complaints of leg pain were dismissed as mere ‘growing pains’ by my physician. Despite my tears and sleepless nights caused by excruciating discomfort, the answer remained unchanged. I experience a multitude of symptoms that align with fibromyalgia, yet my journey with pain began in my legs and has gradually expanded to encompass my entire body. The pain shifts unpredictably, sometimes manifesting in my foot, then transitioning to my finger. Its nature varies significantly; it can be sharp, dull, achy, stabbing, or even numb, making even light touch intolerable. Over the years, I have consulted numerous specialists and undergone extensive laboratory testing, leading to a diagnosis of chronic pain syndrome and orthostatic intolerance. While I have also been informed that fibromyalgia is indeed a possibility for me, medical guidelines prevent a formal diagnosis in children. This leaves me perplexed and seeking clarity on the barriers to diagnosing pediatric fibromyalgia.
Answers (1)
6/29/2025, 3:20:38 PM
OpenHealth AI
It sounds like you have been through a challenging journey with ongoing pain and discomfort, and I want to acknowledge the frustration and confusion you must feel about your symptoms and the lack of a clear diagnosis. Fibromyalgia can indeed be complex to diagnose, especially in children and adolescents. Here’s an overview of why this is the case and some steps you might consider moving forward.
Main Points:
- Challenges in Diagnosis: Fibromyalgia often has overlapping symptoms with other conditions, making it tough to diagnose in younger individuals.
- Symptom Variability: Your shifting and varied pain experiences are typical of fibromyalgia but can also reflect other conditions.
- Next Steps: Focus on symptom management and document your experiences to help healthcare providers understand your situation better.
Explanation:
Fibromyalgia is characterized by widespread pain, sensitivity in the body, and other symptoms like fatigue and sleep disturbances. In children, diagnosing fibromyalgia can be difficult because:
- Overlap with Other Conditions: Many symptoms of fibromyalgia, such as pain and fatigue, can mimic other issues like chronic pain syndromes or even anxiety/depression. This can lead to many tests and consultations without a definitive diagnosis.
- Diagnostic Criteria: Current medical guidelines recognize fibromyalgia primarily in adults. As a result, pediatricians may hesitate to use the term until the patient is older or has demonstrated a more persistent pattern.
- Variability: Your symptom pattern, where pain shifts locations and varies in intensity, is indeed characteristic of fibromyalgia but can also relate to other chronic pain conditions.
Prioritized Next Steps:
- Symptom Tracking: Keep a detailed diary of your symptoms, noting the type, intensity, duration, and any triggers or patterns you observe. This information can be invaluable for your healthcare providers.
- Managing Pain: Consider non-pharmacological options such as gentle exercise (like swimming or walking), relaxation techniques (such as deep breathing or yoga), and good sleep hygiene to help manage your pain and overall well-being.
- Communicate Openly: When you see your healthcare providers, share your symptom diary and express your concerns directly about the possibility of fibromyalgia. This might help them better understand your needs and explore treatment options.
- Support Network: Seek support from groups or networks for chronic pain or fibromyalgia. Connecting with others who understand your experience can provide comfort and practical advice.
Remember, your experience is valid, and seeking clarity about your health is essential. Keep advocating for yourself, and take things one step at a time. If you have further questions or need additional information, feel free to reach out!
Related Questions
Seeking Answers: Unexplained Symptoms That May Indicate Acromegaly
I am a 40-year-old woman, standing at 5 feet 9 inches and weighing 140 pounds. My medical background includes a range of concerning issues such as persistent pain on the right side of my abdomen, an emergency gallbladder surgery in 2024, hypothyroidism, cognitive difficulties, fatigue, post-traumatic stress disorder, fibromyalgia, and a tubular colon polyp identified in 2025. I reside in the Pacific Northwest. At this point, I’m feeling very overwhelmed and would greatly appreciate any insights regarding my health condition. Initially, I suspected acromegaly, but I'm open to exploring various possibilities. **QUESTIONS ABOUT MY NON-CONTRAST MRI:** I have several questions regarding the findings in my non-contrast MRI, and I hope to gain some clarity: * 1. What are the irregularities observed in my skull? * 2. What does the white area signify? * 3. Can someone explain the ribbon-like structure seen in the imaging? **MEDICAL HISTORY** Last year, I underwent an emergency gallbladder removal after years of discomfort, which my primary care doctors failed to diagnose. The surgeon discovered significant scarring and inflammation in my gallbladder. * The sharp, burning pain in my right abdomen persists; it sometimes cramps, radiates heat, and even causes me to sweat profusely. * I also experience significant cognitive challenges—despite sleeping 10 to 14 hours a day, I often feel fatigued and have trouble organizing thoughts, spelling, and finding words. I occasionally have episodes resembling mania. * Since September 2024, noticeable growth has been occurring on my forehead and at the back corners of my skull. I am plagued by intense head pains and sensations of burning and pressure that do not resemble traditional headaches. * Tingling has been a constant issue in my foot, fingers, and shoulder for more than a year; my left foot appears to have grown half an inch longer than my right foot, causing discomfort with shoes, and my hats now fit tightly. * I experience frequent unexplained bruising, particularly in the same areas on my shins. * My mouth is persistently dry, and despite using Biotene, drinking water, and consuming Gatorade, none of these remedies help. During a visit to the emergency room in September 2024, a non-contrast MRI was performed, but the results were inconclusive, leading the staff to dismiss my concerns and send me home. Since then, I have consulted various specialists including gastroenterologists, neurologists, and neuropsychologists, but none have provided a diagnosis or effective treatment plan. While I recognize it may seem paranoid, I cannot shake the feeling that they viewed me as a difficult patient or that they suspected something I wasn’t aware of. I switched to a different healthcare system but have still yet to find answers. I believe I could have acromegaly, but my doctors have been dismissive—likely due to my physical appearance not being overtly indicative of the condition and possibly influenced by my mental health concerns. My skin is fair, and my forehead growth is not easily visible. While my growth hormone levels were slightly elevated initially, the negative result of my Glucose Growth Hormone Suppression Test led the endocrinologist to rule out acromegaly without further testing or referrals. They even misrepresented some symptoms in my patient records. Upon conducting my own research, I discovered several errors in how the lab handled my test, as well as updated guidelines suggesting that it’s still possible to have acromegaly despite negative results on the OGTT. When I respectfully requested a contrast MRI and corrections to my medical summary, the response I received was curt and dismissive. Although I filed a grievance with patient services, they informed me that the review and necessary adjustments could take more than a week. I have sought second opinions from other healthcare systems nearby. Unfortunately, one only accepts internal referrals, which are difficult to schedule, and the other was unwilling to consider me based on the inaccuracies contained in the initial doctor's summary. At this moment, I am feeling lost, confused, and desperate, battling significant pain and struggling to find validation and understanding. Any suggestions or information would be immensely helpful as I navigate this challenging situation.
Investigating Recurring Ear Sensations
28 years old 5 feet 9 inches tall Weighing 255 pounds Caucasian Duration: 4 months Affected side: Left ear Health conditions: Type 2 Diabetes, Gout Current medications: Metformin, Allopurinol I've encountered a peculiar issue recently and I'm seeking some advice. For the past several months, I experience a peculiar sensation in my left ear, which begins every week on either Sunday or sometimes Monday. This rumbling and ringing persists for approximately 12 to 24 hours before subsiding, only to return the following week. During these episodes, my hearing in that ear is compromised, as the rumbling interferes with external sounds. While it isn’t particularly painful, it does occasionally lead to mild headaches. I discussed this with my general practitioner, who prescribed Fluticasone Propionate nasal spray, but unfortunately, it hasn’t yielded any improvement. I would greatly appreciate any insights on what could be causing this condition. Many thanks to all who generously share their time and knowledge in this community; your efforts truly enhance the lives of those around you.
Concerns Over Sudden Racing Heartbeat
At 24 years old, standing 158 cm tall and weighing 55 kg, I experienced a rapid heartbeat that lasted for about ten seconds before it resolved on its own. This unsettling incident occurred while I was seated, and I have not consumed any caffeine or substances that might have triggered it. During this episode, I felt unusual sensations in my chest and a bit of dizziness. I’m really anxious right now and worried about my health, debating whether I should head to the emergency room or simply observe my symptoms for a while. It’s alarming, and I’m fearful of a serious issue. I also need to schedule another appointment with a cardiologist since I have a history of palpitations. My last visit was six years ago, where I was told my heart structure was normal but later diagnosed with POTS, alongside experiencing frequent PVCs. There’s a nagging fear that I might have encountered a dangerous condition such as a run of ventricular tachycardia. Although I currently feel alright and my heartbeat has returned to normal, I would appreciate any advice or insights on what steps to take next. For context, I regularly take propranolol for my condition.
Rash on My Neck: Seeking Insights
I recently discovered a rash on my neck that I can't identify. It may have developed within the last day or two; I might have overlooked it after my shower yesterday. Interestingly, it doesn’t cause any pain or itching. Does anyone have any thoughts on what it might be? Here are a few details about me: * I'm a 42-year-old male. * My height is 163 cm and I weigh 53 kg. * I am of Caucasian descent and I do not smoke. * I consume cannabis via gummies and I previously smoked/vaped. * On weekends, I drink about 4-6 alcoholic beverages on Friday, Saturday, and Sunday evenings, but I stay dry from Monday to Thursday. * I do not use any recreational drugs. * My location is Canada. * My medications include pantoprazole for GERD and Vyvanse for ADHD. * Although possibly unrelated, I want to mention a few existing medical concerns: I occasionally notice blood in my stool—likely due to hemorrhoids—and I have a history of iron deficiency anemia over the past couple of years, despite taking daily iron supplements with vitamin C. Additionally, I have experienced a weight loss of 13 kg over the past four months, dropping from 66 kg to 53 kg. This may be attributed to a reduced appetite, likely related to the emotional impact of my father’s passing during Christmas and the recent terminal cancer diagnosis of my severely autistic brother, who has only months left to live.
Did My OBGYN Understand My Situation and Deceive My Mother?
At 32 years of age, I am assigned female at birth (AFAB) and reflect on a harrowing experience from my youth. When I was still a minor, I was manipulated and abused by an older boyfriend who ultimately caused me to become pregnant. He was later apprehended and incarcerated. Before he was jailed, my OBGYN informed my mother and me that to conduct a paternity test for legal proceedings, a surgical abortion would be necessary. I was resolute—not only would I refuse that path, which I deemed traumatic for both myself and my unborn child, but I made my own decision regarding the matter. I requested my boyfriend to arrange a standard abortion since I was nearing the three-month mark of my pregnancy. I was given two pills—one to swallow immediately and another for a later time, although the specifics are a blur now. Prior to the procedure, an ultrasound was performed to confirm the presence and positioning of the fetus. Following the medication, I experienced excessive bleeding, prompting my mother to take me to the doctor for further examination. I distinctly recall feeling the loss of my baby before that visit, a phenomenon the abortion clinic had warned could happen. During our appointments, my mother displayed classic helicopter parenting tendencies, making me uncomfortable. The day of the doctor's visit, the physician began the ultrasound, and I sensed it was taking longer than usual. An air of tension built in the room, compounded by his unusual silence. He eventually lifted the ultrasound wand, pausing for what felt like an eternity. Something felt amiss to me. Finally, he informed my mother, "The pregnancy has become ectopic. We must administer an abortion shot and hope for it to resolve itself; otherwise, it may pose serious health risks." My heart raced at this revelation. Deep down, I was certain it was not ectopic. The abortion clinic also affirmed this. Was this doctor simply speculating, making a grave error, or inadvertently acting as my savior? I often contemplate that day and the physician’s actions. Was I misreading the situation due to my heightened stress levels, or was my instinct correct? I turn to the medical community on Reddit: was this doctor really my guardian angel in disguise? Based on the details I've shared, what are your perspectives? If he indeed saved me during that unsettling time, I yearn to reconnect and express my gratitude for his assistance all those years ago. Thank you for considering my story.