Struggling for Answers: My Ongoing Battle with Back Pain and Medical Neglect
At 22, having transitioned from female to male, I find myself grappling with a troubling medical situation. For nearly five years, I've endured severe discomfort in my lower back, yet my previous physician was hesitant to pursue any diagnostic testing, instead opting for a regimen of medications—a significant portion of which included Zaldiar. After a change in my healthcare provider, I was finally referred to various specialists and underwent multiple tests, revealing the diagnosis of spondyloarthritis. Following the diagnosis, I was prescribed a treatment plan necessitating bi-weekly injections of Idacio. Unfortunately, these interventions proved ineffective. Advising that physical activity might alleviate my pain only exacerbated my condition; each attempt at exercise resulted in heightened levels of agony. As time passed, my symptoms worsened and spread to encompass my entire back. By the summer of 2023, the pain migrated to my knees as well, but my new doctor dismissed my concerns entirely. The pain relief medications and injections were futile, seemingly failing at their purpose of controlling the progression of my condition. In October 2023, after months of limping and a sudden episode post-nap where I couldn't stand unassisted, I resorted to crutches for mobility. Another specialist expressed skepticism regarding my prior diagnosis and requested further imaging. Following this, I relocated once more and, facing a frustrating wait for my radiology appointment—nearly a year with no updates—I switched hospitals. At my new clinic, the specialist promptly ordered the necessary tests, which I completed within two months. By this stage, I was practically confined to a wheelchair due to excruciating knee pain, coupled with persistent discomfort across my back and neck, rendering crutches a challenge to use. A few days ago, I met with the new specialist, and the consultation fell short of my hopes. I conveyed my ongoing struggle with the current medications—Captor every eight hours, Celecoxib daily, and cortisone during flare-ups lasting 9 to 14 days—without relief. I detailed my prolonged flare-ups, the latest of which has persisted for over a month, causing unbearable discomfort when seated for more than short periods. Despite being aware of my struggles from our initial appointment, he proclaimed my condition could now involve a herniated disc, insisting further diagnostic clarity would take time, particularly for someone of my age. I reminded him of my existing diagnosis, albeit under scrutiny, but he opted not to officially document any changes. Instead, he suggested I resume walking and referred me to rehabilitation, advising me to engage in exercise despite the uncertainty surrounding my ability to do so without pain. Although he recommended allowing another three months on my medications—unchanged for two years—he did not pursue additional tests. I’m trapped in this cycle of persistent pain, feeling as though my concerns fall on deaf ears once again. I’m also anticipating my test results to potentially shed more light on my situation, which I aim to share for further insight. I’m apprehensive about trying physical therapy, given that I dread the thought of exacerbating my condition or triggering additional flare-ups. To provide some additional context, I reside in Spain and have been on testosterone since November 6, 2018. Neither I nor my father can recall any family history related to similar health issues. When I palpate my lower back, I can feel some unusual bumps—though they are uncomfortable rather than painful. As this is my first Reddit post, I’m still navigating the platform. I apologize for any lack of clarity, and I’m open to any questions in the comments. Any advice or insights on potential avenues to explore would be immensely appreciated. Thank you for taking the time to read my experience.
Answers (1)
6/28/2025, 12:02:00 AM
OpenHealth AI
I'm sorry to hear about the struggles you've been facing with your back pain and the challenges in getting appropriate care. Your experience highlights a significant issue in managing chronic pain conditions, and I commend you for seeking to understand your health situation better. Here are some key points to consider:
Main Points
- Spondyloarthritis & Pain Management: You have a diagnosis of spondyloarthritis, a type of inflammatory arthritis affecting the spine and possibly other joints. It’s essential to address both inflammation and pain effectively.
- Importance of Comprehensive Evaluation: Given that your symptoms have evolved and new concerns, such as a potential herniated disc, have arisen, further diagnostic imaging may be necessary to clarify your current condition.
- Physical Therapy & Rehabilitation: Although you have apprehensions about physical therapy, it can be crucial for improving mobility and managing pain, especially under the guidance of a professional experienced with chronic pain.
Explanation
Spondyloarthritis can lead to significant discomfort and limitations if not managed properly. The pain you feel can sometimes be compounded by anxiety about engaging in activities that might worsen your situation. It’s essential to have a comprehensive plan that addresses both the underlying disease and your quality of life.
Next Steps
-
Await Current Test Results: Since you have recent imaging completed, it’s important to follow up with your specialist about these results. They could reveal more about any structural issues in addition to the existing spondyloarthritis diagnosis.
-
Reassess Medication with a Specialist: Since your current medications haven't provided relief, look for a rheumatologist specializing in pain management and inflammatory conditions. They may consider alternatives, such as biologic medications or corticosteroid injections, tailored to your needs.
-
Engage in Physical Therapy: Seek a referral to a physical therapist experienced in chronic pain and spondyloarthritis. They can provide modified exercises that are gentle and effective, often incorporating pain management techniques that can help you build confidence in moving without exacerbating your symptoms.
-
Explore Alternative Pain Management Techniques: Consider discussing options for complementary therapies such as acupuncture, massage therapy, or mindfulness meditation. These can sometimes offer symptomatic relief and improve overall well-being alongside traditional treatments.
-
Document Symptoms: Keep a detailed diary of your pain levels, activities, and any flare-ups. This information can help healthcare providers better understand your condition and tailor your treatment plans more effectively.
-
Advocate for Yourself: If you feel your concerns are not being taken seriously, don’t hesitate to seek a second opinion. Your health and comfort should be the priority, and having a doctor who listens and formulates a plan with you can make a significant difference.
Support
Please know that you're not alone in this journey. Chronic pain can feel isolating, but there are communities and professional resources that can provide support. Engaging with both medical professionals and peer support groups may enhance your understanding and bolster your resilience.
Keep communicating openly about your concerns and experiences with your healthcare team. Your input is vital in finding an effective treatment plan. If you have any further questions or details to share, feel free to reach out.
Related Questions
Understanding Possible Seizure Triggers and Recurrence Risks
Health Background: I am a 21-year-old female, standing at 169 cm and weighing 65 kg. Over the past three years, I have been using oral contraceptives. As of this morning, I started taking 25 mcg of levothyroxine along with a weekly vitamin D supplement of 0.266 mg. Recently, I was diagnosed with hypothyroidism and found to have a vitamin D deficiency that I suspect has existed for the last three years. I do not consume alcohol or smoke, and I can confirm I am not pregnant. Two years ago, I experienced a mild concussion. I currently reside in Spain. A couple of months back, in mid-December, I blacked out twice. The second occurrence took place while I was at the doctor’s office after seeking urgent medical care for the initial incident. Following the second episode, I underwent a CT scan and an EKG, both of which returned normal results. Further tests, as directed by my physician, revealed a critical vitamin D deficiency and hypothyroidism; however, he expressed doubt that either of these conditions led to my loss of consciousness. I was then referred to a neurologist, and I am presently awaiting an appointment. Although the waiting period is lengthy, my doctor indicated that I should receive priority for scheduling, although the exact timeframe remains uncertain. The referral document summarized my events, labeling the second episode (which the physician witnessed) as a potential seizure devoid of tonic-clonic movements—a revelation that took me by surprise. After regaining consciousness, I felt extremely disoriented and terrified, struggling to process what was happening. I have no prior history of seizures, epilepsy, or any related conditions, and there is no known family history of these issues. If this indeed was a seizure, what might have triggered it? Additionally, what is the likelihood of experiencing another one? Since that time, I have not had any further incidents, but I have experienced moments where I felt a sense of impending doom, which I managed to overcome. I intend to wait for the neurologist's evaluation, but the uncertainty surrounding a possible neurological condition is quite distressing. Thank you for any insight you can provide!
Persistent Pain in Right Shoulder and Arm After Lifting
Hello, everyone! I’m a 23-year-old male and have been engaged in weightlifting for several years now. Recently, I’ve been struggling with ongoing discomfort in my right shoulder and arm, which I haven’t been able to accurately identify. The pain manifests during particular movements, especially with lateral raises or when my arm is raised to shoulder level while rotating my wrist. Certain pressing and pulling activities can also provoke this discomfort. Rather than feeling sharp, it’s a deep, nagging sensation that sometimes seems localized in the front area of the shoulder or at the biceps tendon, and at other times it feels more like it’s situated between the shoulder and upper arm. Fortunately, there’s no numbness or tingling involved. This issue began while I was working out. I decided to take a break for around two months, but when I returned, the pain persisted. After consulting a physician, I was diagnosed with bicipital tendinitis. Since then, I’ve reduced my upper-body workouts, completely steering clear of shoulder exercises and heavy lifting, and have begun a gentle rehabilitation regimen focusing on external rotations, pendulum movements, and scapular exercises. Despite adhering to this routine for about a week, I haven’t experienced any noticeable improvement. Is it typical for this type of tendon injury to require an extended period for recovery? At what point should I consider diagnostic imaging, such as an ultrasound or MRI? Additionally, are there frequent rehabilitation errors that might impede the healing process? I appreciate your insights in advance!
Understanding EEG Results for My 22-Month-Old Son: Insights Needed
Could someone help clarify this for me? My son, who is just 22 months old, hasn’t started walking yet, becomes tired easily, and has been experiencing behavioral outbursts. He had a febrile seizure in February 2025, followed by another unexplained seizure in April 2025, which led us to consult a neurologist. Since he was 3 months old, he has been receiving therapy from a physical therapist for torticollis. At birth, he spent five days in the NICU due to issues with meconium aspiration. A recent MRI showed normal results, and he also had a follow-up EEG after one conducted in July 2025. The results from this recent EEG were abnormal for a pediatric patient in awake, drowsy, and sleeping states. Notably, there were brief episodes of left frontotemporal delta slowing, which occurred mainly when he was awake and drowsy. There were no signs of epileptiform activity detected. In contrast, the EEG performed back on July 3, 2025, was deemed normal for both awake and drowsy states, again with no evidence of epileptiform irregularities, although it did not capture any sleep data. This examination was prompted by the child's existing history of febrile seizures. Importantly, he is not currently on any anti-seizure medications. The EEG procedure used standard electrode placements per the 10-20 system, conducted a single-lead EKG, and included continuous video monitoring. During the analysis, the background activity was symmetric, indicating some anterior-posterior (AP) organization, with a dominant rhythm of 50-80 microvolts at 7 Hz. His drowsy state was marked by a reduced amount of eye blink activity, less breathing motion interference, and a generalized slowing in theta/delta frequencies. Stage II sleep exhibited spindles and vertex waves patterns. Additionally, there were intermittent bursts of 250-300 microvolts in the left frontotemporal region with semi-rhythmic activity of 2-4 Hz, mostly observed during wakefulness and drowsiness. No definitive epileptiform discharge was noted. Photic stimulation during the test did not elicit a strong response, and hyperventilation was not conducted during this session.
INTENSE Spine Discomfort, Breathing Difficulties, Muscle Twitches, and Sweating
To elaborate on the situation mentioned in the title, I’ve been experiencing unusual muscle twitches and spasms for the past few days, along with some discomfort in my back. However, today, I felt an unexpected sharp pain shoot through my spine, which has left my legs feeling numb and made it impossible for me to sit up straight. Additionally, I’ve been dealing with cold sweats for the last hour and struggling to breathe properly. Perhaps I’m just overanalyzing things and it’s a common occurrence, but the intensity of the pain is overwhelming—it's truly unbearable. I’m shaking quite a bit, and unfortunately, my parents aren’t responding to my attempts to reach them for help. I have a history of a chronic heart condition and arthritis, yet I’ve never experienced pain this severe, especially in my spine. For context, I am nearly 15 years old and female. My current medications include pain relievers, anxiety medication, beta blockers, and some vitamins, though those specifics may not be particularly relevant. I don’t smoke; however, I have tried vaping a few times, which might not matter much, but I thought it was worth mentioning as it was requested.
Understanding Atrial Fibrillation and Thyroid Issues: Variability in Cardioversion Decisions
Hello everyone, I’m reaching out for guidance regarding my mother’s current health situation, and I’d greatly appreciate any shared experiences or thoughts. **My mother's background:** - **Age**: 55 years - **Weight**: Recently dropped to 116 kg from 118 kg in just two days, likely due to diuretics. - **Health history**: Previously an underactive thyroid, undiagnosed and untreated, now presenting as overactive. - **Medications**: Currently taking thyroid medication and a beta-blocker (Rapiblock). **Current health status:** My mother has been hospitalized since Tuesday, experiencing **atrial fibrillation with heart rates exceeding 200** beats per minute due to her thyroid's hyperactivity. - The plan for cardioversion was initially settled on Tuesday. However, the following day, the medical team advised postponing it until her thyroid levels could be stabilized, believing that her heart rate would return to normal once her thyroid condition was managed. - Her **obesity** precludes her from undergoing a transthoracic echocardiogram, and due to her thyroid concerns, she cannot handle contrast dye (this has been a consistent issue for over four years). Therefore, the only feasible option was a **transesophageal echocardiogram (TEE)**, which has yet to be performed. - She has been prescribed various medications including beta-blockers and thyroid treatments in the past. - On Friday, a doctor proposed proceeding with cardioversion; however, the attending senior physician objected. - Today (Saturday), another clinician has expressed a desire to move forward with cardioversion, having initiated a new medication, as the senior physician is unavailable. - **Communication has been unclear**, as we were notified of developments by a nurse rather than the physician in charge, causing confusion and anxiety. - Currently, only a **chest X-ray** is scheduled, and the TEE remains unaddressed. **My inquiries are as follows:** 1. Is it common for medical professionals to have varying opinions and frequently revise medication or treatment plans like cardioversion? 2. Is it safe to conduct cardioversion in the absence of a TEE? I presumed that this was a standard procedure to exclude the presence of blood clots. 3. Is it usual practice to have only a chest X-ray prior to moving ahead with cardioversion? 4. How typical is it for patients or their families to not be directly informed about treatment changes and learn about them through nursing staff instead? I recognize that this cannot substitute for professional medical advice. I’m simply trying to discern whether these circumstances are typical or if we should express our concerns more assertively with the healthcare facility. Thank you for your insights!