Navigating Life with Chronic Illness
Hello, everyone. I'm a 38-year-old woman, and for most of my life, I’ve been burdened with a multitude of chronic health challenges. Recently, the weight of it all has become exceedingly frustrating, leaving me uncertain about what steps I can take next. At the age of 15, I received a diagnosis of Lupus along with Lupus Nephritis. My prominent symptoms included severe immobilization and an overall sense of malaise. My treatment involved high doses of steroids coupled with a six-month regimen of Cytoxan. During my childhood, I experienced unusual allergies. For instance, my skin would break out in rashes when it came into contact with cold surfaces. Additionally, I was born with a condition known as Marcus Gunn jaw-winking syndrome, which impacts my left eye. In 2016, I encountered a significant issue with a cyst in my right breast. Despite several months of antibiotic treatment, it kept reappearing, eventually progressing to a deep-seated infection that resembled mastitis. This unfolded into a series of complications, including a PICC line and encountering a superbug; thankfully, after two years, it subsided. The medical team speculated that this may have been linked to my immune system. About six years ago, I was also diagnosed with Hypothyroidism. I regularly suffer from debilitating migraines, for which I receive Botox injections every three months, yielding substantial relief. However, a recent CT scan revealed the presence of fibrous dysplasia in my left sphenoid sinus, which adds another layer to my complications. Moreover, I grapple with depression and anxiety, which are partly due to the cumulative toll of my health struggles as well as the hardships of my early years. Next month, I plan to consult a psychiatrist as I suspect I might have ADHD in addition to my existing conditions. On another note, I have always dealt with dry skin, particularly on my hands and feet, likely a result of lupus; however, my foot issues have escalated drastically. My heels now exhibit a thick, discolored callus that requires regular debridement, yet it continually returns. After consulting numerous physicians who were unable to provide solutions, one finally diagnosed me with Pityriasis Rubra Pilaris. Topical treatments have been ineffective, and I cannot explore biologic options at this moment due to my current medications—Cellcept and Lupkynis for Lupus. Presently, I take prednisone, Plaquenil, Cellcept, Lupkynis, and levothyroxine. To sum it up, it’s just overwhelming. I strive to manage everything, but it feels like an insurmountable challenge at times. I suspect these various conditions might be interrelated, yet no one has considered a holistic view of my health. I often find myself addressing each issue individually while wondering if there is a deeper cause I should be exploring. Or perhaps this is just the reality I must accept, and I am doing all I can, needing to find a way to cope. The constant feeling of being submerged in health-related struggles is daunting. I recently discovered that my hospital has a center dedicated to rare diseases, and I would be open to participating in studies or clinical trials. I'm sharing my experiences here in hopes of gaining different perspectives or advice. If there are any healthcare professionals or fellow patients with insights, I would greatly appreciate your input. This is my inaugural post on Reddit, so thank you for taking the time to read my story!
Answers (1)
7/31/2025, 8:20:52 PM
OpenHealth AI
Thank you for sharing your experiences in such detail. It’s clear you’re facing numerous challenges, and it’s completely understandable to feel overwhelmed. Here’s a structured approach to your situation, focusing on actionable steps.
Main Points
You have multiple chronic health conditions, including lupus, hypothyroidism, and skin issues, which contribute to your feeling of being overwhelmed. Exploring holistic care and participating in research studies may provide support.
Explanation
Living with chronic illnesses like lupus and its related complications can be daunting, especially when symptoms and secondary conditions feel interconnected. Given your history of immune challenges and the complexity of your conditions, it's important to approach your health holistically. This means not just treating individual symptoms but also understanding how various conditions might interrelate and influence one another.
Next Steps
-
Holistic Health Assessment: Since you feel your conditions may be interrelated, consider asking your healthcare providers about referring you to a specialist who can evaluate your health from a holistic perspective, such as a rheumatologist or an integrative medicine specialist. They might be able to help connect the dots between your diagnoses.
-
Participate in the Rare Disease Center: Engaging with the rare disease center could provide not just potential treatments or information about your conditions but also connect you with specialists who may have insights into your overall health. This can be valuable for both medical and emotional support.
-
Manage Skin Issues: For your thick calluses and pityriasis rubra pilaris, gentle daily care using moisturizing creams can help. Look for moisturizers with ingredients like urea or lactic acid, which can soften tough skin. Since topical treatments haven’t been effective, it may be worth consulting a dermatologist who specializes in autoimmune-related skin conditions to explore alternative therapies.
-
Mental Health Support: Since you’re already planning to consult a psychiatrist regarding potential ADHD, this is a great step. Managing mental health is crucial when dealing with chronic illness. Consider therapy options (CBT or supportive counseling) that specifically address coping strategies for chronic illness and anxiety.
-
Support System: Look for local or online support groups for individuals with lupus or chronic health conditions. Sharing experiences with others who understand can provide emotional relief and practical strategies.
-
Keep a Symptom Diary: Documenting changes in your symptoms, treatment responses, and mental health can help you identify triggers and patterns that might be useful for discussions with your healthcare providers.
Conclusion
While managing multiple chronic conditions can be overwhelming, taking these steps may create more coherence in your treatment approach and provide relief. Acknowledge that it’s okay to seek support and that you’re doing your best under challenging circumstances. Please feel free to share any further questions or updates as you explore these options.
Related Questions
Experiencing Widespread Muscle Weakness
I’m a 36-year-old male and have recently been facing a troubling situation where the muscles throughout my body seem to be losing function—including my eyelids. The trouble began in May 2021 when I lifted a heavy garbage can with my right arm in a shrugging action. Following that, I felt a combination of pain and weakness concentrated in my right shoulder blade, as well as my shoulder and collarbone. Soon after, I noticed my shoulder began to pop and click. Afterward, I consulted with an orthopedic specialist who conducted x-rays on both of my shoulders. He informed me that everything appeared normal and dismissed the popping sounds as inconsequential. I also mentioned experiencing neck pain, but he indicated that addressing neck issues wasn’t his area of expertise. He diagnosed me with bilateral shoulder and neck discomfort and recommended physical therapy. The day after my appointment, I attempted to adjust my position in my desk chair by leaning on the left armrest, putting my forearm under the weight of my body. Suddenly, my shoulder jolted, and I felt a sharp weakness in my arm, accompanied by popping and clicking noises, similar to what happened with my right arm. I reached out to the orthopedic office to inform them about this incident, but the physician assistant who responded said the doctor would not see me again simply due to how I was sitting, and suggested I attend physical therapy first. She mentioned that if I continued to experience weakness, a neurologist might be necessary. Feeling concerned, I returned to my primary care physician for a follow-up appointment and recounted my experience. He didn’t appear worried, and my blood tests returned normal results. During the summer of 2021, I began physical therapy where the therapist diagnosed me with strains in my trapezius and rhomboid muscles. The subsequent therapy sessions consisted of painful exercises and stretches, yet I observed little to no improvement in terms of strength or stability. Activities like using the arm bike and weight machine were excruciating, and I frequently inquired whether my symptoms could be attributed to a tear or nerve damage, but the therapist insisted that was not the case and dismissed my concerns. After my tenth session, I decided it was best not to return. In April 2022, I visited a neurologist. I struggled to lift myself onto the examination table and needed assistance from a step stool. He didn't suspect any neurological issues when I asked him about an EMG or other assessments, he declined to proceed with those tests. Disheartened by these experiences, I chose not to pursue further medical consultations. Fast forward to April 9, 2025, I misstepped while descending some stairs, causing my right heel to catch, and I landed hard with my toes pointed. I had no visible signs of injury such as swelling or bruising, but soon after, I began to experience persistent pain and weakness, especially in my toes and the arch of my foot. By April 13, I instinctively elevated the toes on my left foot, and to my dismay, the same pain and weakness emerged, again without any visible signs like bruising. Since then, both feet have lacked strength, and my big toes feel unusually floppy. In July 2025, I had a troubling experience after having my hair washed at a salon. I held my neck in an awkward position for the duration, which resulted in a burning sensation. Regrettably, I didn’t express my discomfort, fearing a scene. Following this, I noticed significant weakness in the muscles at the front of my neck, under my chin, which gave the appearance of a receding chin. Additionally, my facial muscles, particularly in my cheeks, felt weak and could easily be pressed in with minimal resistance. In January 2026, I bought a new game controller for my laptop, having not played video games for a long time. Initially, it was manageable, but soon after, my hands and forearms began to feel uncomfortable and painful. This discomfort escalated significantly to where I had to discontinue use completely; my hands felt drained of energy and experienced achiness, tingling, and numbness. Then, on February 3, 2026, while seated and using my laptop, I noticed a peculiar sensation when moving my eyes. My eyelid muscles felt weak, and one of my eyelids began twitching. I found it increasingly difficult to open my eyes as widely as I used to. I plan to see a primary care physician once more, but I’m uncertain how to communicate all of this effectively to receive proper care. My circumstances have reached a point where my parents must assist me with everyday tasks, including driving, opening doors, and even lifting light objects. My ability to raise my arms above my head has become severely limited as well.
Liver Mass Assessment
Patient Profile: - Age: 61 years - Height: 5'9" - Weight: 240 lbs - Gender: Female - Lifestyle: Non-drinker, non-smoker, no illicit drugs Current Medications: - Atenolol 10mg (morning and evening) - Rosuvastatin 40mg (evening) - Duloxetine 60mg (evening) - Spironolactone 25mg (recently added) - Jardiance 10mg (recently added) Medical History: The patient has a notable history of multiple pheochromocytomas and paragangliomas, having undergone surgery on eight occasions. According to scans performed three years ago, two subcentimeter retroperitoneal masses were identified, suggestive of potential paraganglioma. Additionally, she suffers from secondary polycythemia and possesses the PHD1 gene mutation. Previously, she received treatment at a prominent research institution in the United States. However, her endocrinologist has since retired and returned to their home country. Current Condition: At present, she is mostly asymptomatic. However, in January 2026, she experienced a concerning event requiring an ambulance transport to a local emergency room, where her oxygen levels registered at 88-89%. This incident was unsettling, given her extensive medical history. The emergency physician initially diagnosed her with congestive heart failure (CHF), but upon discharge, her family medicine doctor suggested pneumonia. During her hospital stay, a cardiologist—who has never managed a pheochromocytoma patient—recommended a chemical stress test. A CT scan performed on her chest revealed a 3.2 x 2.5 cm mass located in the left lobe of her liver. Her blood tests typically show elevated levels related to pheochromocytomas; however, the laboratory does not conduct resting catecholamine testing, which leads to unreliable results, despite them being consistent over time. Furthermore, she has received care at major hospitals in Minnesota and both leading hospitals in Cleveland, Ohio. Unfortunately, when she required her last surgery, the tumor board declined her case, citing an unfavorable risk-benefit ratio. This leaves her without a specialist in pheochromocytomas. Request for Guidance: The patient is seeking advice or recommendations for her current health situation and management of her conditions.
Concerns About My Daughter's Morning Health Issues
My 17-year-old daughter experiences troubling symptoms each morning, particularly on days when she needs to rise early for school or work. She often wakes up feeling dizzy and nauseated, accompanied by a rapid heartbeat exceeding 100 beats per minute. This situation prevents her from being able to eat and may persist for several hours, or in some cases, throughout the entire day. Standing at 5 feet 8 inches tall (172 cm) and weighing 121 pounds (55 kg), her physical health otherwise seems fine. I have a personal history of inappropriate sinus tachycardia (IST), which is why I take beta-blockers for management. A few years ago, she consulted a cardiologist regarding her frequent episodes of near-fainting, who recommended increasing her water intake and adding more salt to her meals. Given the persistent nature of her symptoms, I am contemplating whether a follow-up appointment with the cardiologist is warranted, especially since all previous tests, including ECG and ultrasound, came back normal. This situation significantly affects her daily life, restricting her ability to engage fully in school and work. Any suggestions would be greatly appreciated!
Concerns Regarding Neurological Health
Hello! I received an epilepsy diagnosis back in 2008, and throughout this time, various MRI and CT imaging studies have indicated issues related to cerebral function and encephalopathy. Despite consulting multiple neurologists over the years, I’ve found that none of them appear worried about the encephalopathy aspect. Shouldn’t this be something to take more seriously? My cognitive abilities, including memory and vision, have noticeably deteriorated as time has passed. I’m feeling lost since my previous neurologists have not acknowledged my concerns adequately. If anyone could offer guidance or suggest resources, I would greatly appreciate it. In addition to epilepsy, my other medical conditions include Narcolepsy, Lynch Syndrome, Migraines, a mutation associated with HLA-B27, and Hashimoto's disease, along with others that escape me for the moment. Currently, I’m on a medication regimen that includes Lamictal, Xcopri, Hydroxyzine, Solifenacin, Zoloft, Wellbutrin, Sunosi, Aimovig, and Famotidine.
Navigating the Complexity of Symptoms: Is It PCOS or Something Else?
While I’m not an expert in self-diagnosis, I find myself puzzled by an array of symptoms that overlap, making it challenging to pinpoint what might be affecting my health. Let's break down my situation: - Age: 25 years, Gender: Female, Height: 5’1”, Weight: 125 lbs. - The last menstruation occurred in June 2024. Prior to this, my menstrual cycle was remarkably consistent since I was around 12 years old, typically without severe premenstrual symptoms, heavy flow, or irregularities. - Various blood tests over time reveal that most hormone levels fall within normal ranges, with the exception of estradiol (persistently between 10-20) and progesterone (remaining below 0.2). - A couple of results raised some concerns for me personally, even if my doctors weren’t alarmed: my morning cortisol was measured at 13.4 and in the afternoon at 9.49. One test indicated a TSH level of 2.35, which increased to 3.93 months later. My fasting glucose consistently hovers around 80, whereas random glucose levels were recorded at 68, and postprandial glucose was 65. - An MRI indicated a "deviation of the pituitary stalk, potentially linked to a small pituitary adenoma." - An ultrasound revealed "multiple oval, well-defined, anechoic images with posterior acoustic enhancement, measuring a few millimeters, located around the edges of the stroma." - The symptoms I am experiencing include disrupted sleep (frequent awakenings, particularly around 3 AM, making it hard to resume sleep), lack of energy, difficulty in weight management, persistent hunger, heightened anxiety, and hair thinning. - Birth control (drospirenone and ethinyl estradiol) exacerbated nearly all of my symptoms, leading me to discontinue use after two weeks despite experiencing a withdrawal bleed. - My lifestyle is generally healthy; I consume a lot of whole foods, engage in weightlifting, and run regularly. Given that I’ve received a diagnosis of PCOS, I’m wondering if this assessment seems accurate. What options do I have moving forward, especially since the contraceptive method didn’t provide relief and I appear to exhibit signs of additional complications such as thyroid issues or cortisol dysregulation?