Experiencing Worrisome Symptoms — Potential Autoimmune Flare?
Hello everyone, I'm seeking some insight before I consider heading to the emergency room. I've been dealing with autoimmune-related health issues for several years, which include: - Diagnosed with ankylosing spondylitis. - A history of positive lupus anticoagulant. - Currently active lichen planus, affecting both my skin and mouth. - Chronic fatigue coupled with inflammatory symptoms and deficiencies in vitamin D and magnesium. - Undergoing evaluation for lupus or another connective tissue disorder. In the past week, I've noticed a disturbing and rapid escalation of my symptoms, many of which are completely new to me: - Intense headaches centered in my temples that persist even throughout the night. - Blurred vision and challenges with focusing. - Tingling or numb sensations in my extremities and other areas (lasting over five days). - Episodes of excessive sweating. - Recent onset of neck stiffness. - Experiencing a tactile hallucination yesterday; it felt like something was crawling on my collarbone, but nothing was actually there. - A pervasive sense of fogginess, low energy, and mental unease. - Significant imbalance when standing. - The lichen planus has spread to my lower lip and worsened greatly. - Newly appeared painful mouth ulcers. - An unexpected pain in my outer ankle, which feels swollen but lacks any apparent injury. - Recently observed possible hair thinning. - Overall body inflammation and soreness. - Decreased appetite. - A sense of being completely run down. Previously, investigations were conducted regarding possible lupus or Sjögren’s syndrome due to fluctuating autoantibody levels and persistent inflammation. I have a routine appointment with my rheumatologist scheduled in a few weeks, but I am not currently on any immunosuppressive treatments, just medication to alleviate symptoms. This combination of new symptoms has left me feeling quite anxious. I have concerns surrounding: - Vasculitis (potentially involving the central nervous system or smaller blood vessels). - Temporal arteritis / giant cell arteritis (considering the headaches, vision issues, and neck stiffness). - Inflammation of the nervous system. - Autoimmune encephalitis. - Other serious neurological or immune system complications. Could these symptoms indicate some form of vasculitis or temporal arteritis, even at my age (in my 30s)? Is it common for tactile hallucinations to occur during an autoimmune flare or with central nervous system involvement? What types of blood tests or imaging could be beneficial in ruling out these conditions? Any suggestions, experiences, or guidance would be greatly appreciated. I recognize that diagnoses can’t be made here, but I'm feeling increasingly lost and anxious about potentially delaying necessary treatment if my condition is serious. Thank you in advance for your help!
Answers (1)
7/27/2025, 3:30:58 AM
OpenHealth AI
I'm really sorry to hear that you're going through this, and it's understandable to feel anxious given the range of new and concerning symptoms you're experiencing. Your existing autoimmune conditions, coupled with the rapid escalation of different symptoms, definitely warrant careful consideration.
Main Points:
- Your symptoms—such as intense headaches, blurred vision, tingling sensations, and new inflammation—could suggest serious complications related to your current autoimmune status.
- While the possibility of conditions like vasculitis or temporal arteritis could be considered, a thorough evaluation is essential since symptoms can overlap with many autoimmune conditions.
- Immediate attention may indeed be warranted if symptoms continue to escalate.
Explanation:
The combination of your history (an autoimmune condition and current symptomatology) makes it particularly important to be vigilant. Symptoms like severe headaches, vision changes, neurologic changes (like numbness or tingling), and the occurrence of hallucinations can be associated with several serious conditions, including those affecting the nervous system and blood vessels. It's less common for tactile hallucinations to occur strictly due to autoimmune flares but can happen in certain neurological disorders.
Next Steps:
-
Monitor Symptoms Closely: Keep a detailed log of your symptoms, including when they occur, their severity, and any patterns. This record can be useful for healthcare providers.
-
Consider Immediate Care: Given the seriousness of your symptoms, especially the headaches and visual disturbances, seeking immediate medical attention can be crucial. If they worsen or if you develop new severe symptoms (e.g., severe headaches, confusion, or loss of consciousness), consider visiting the emergency room.
-
Hydrate and Rest: While your symptoms are concerning, prioritize staying hydrated and rest as much as possible. This is crucial for your overall health and managing fatigue.
-
Prepare for Your Next Appointment: When you see your rheumatologist, raise all your current symptoms. Discuss the potential need for blood tests and imaging (e.g., MRI or CT scans) to rule out serious conditions like vasculitis or CNS involvement.
-
Manage Stress and Anxiety: Practice relaxation techniques, such as deep breathing or mindfulness, to help manage the anxiety related to these symptoms.
-
Discuss Medication Adjustments: Given the escalation of your symptoms, consider discussing with your healthcare provider any potential adjustments in your symptomatic treatment that could provide relief in the meantime.
It's crucial to address these symptoms proactively and to communicate openly with your healthcare providers about your concerns. You're not alone in this, and your concerns are valid. If you feel the symptoms are becoming more severe, do not hesitate to seek immediate care.
Related Questions
Concerns About Potential Peripheral Artery Disease (PAD)
For the past three to four years, I have been dealing with a persistent numbness in my left foot. Initially, I suspected it might be due to a pinched nerve or perhaps something similar, but the sensation has never completely returned. As time has gone by, I've encountered additional worrying symptoms: - My feet have started to develop a purple hue, particularly evident when I sit in positions that put pressure on my legs or when I take a shower. This discoloration has become one of the most alarming signs of my condition. - The growth of my toenails has slowed considerably, and they now appear uneven and ridged. - Additionally, my feet have a temperature that feels significantly colder than the rest of my body, and they no longer grow hair as they once did. I do not smoke and I’m not diabetic; however, I have high cholesterol and received an elevated result on a lipoprotein test. The prospect of PAD is frightening to me, as it seems synonymous with a grim future. I have been referred to a cardiologist, but they are reluctant to conduct an Ankle-Brachial Index (ABI) test since I am under 35. I want to remain hopeful and believe I don't have PAD, yet I struggle to identify any other plausible explanations for these symptoms. What could be potential alternatives to consider, if any exist?
Unexplained Left Chest Pain, Electric-Like Jabs in Lower Back, and Unusual Headaches
Hi there, I’m a 15-year-old experiencing some peculiar health issues lately. A visit to my doctor led to a diagnosis of anxiety and poor posture after I complained about headaches and strange, electric sensations rising through my head. However, after that appointment, I became aware of pain in my heart and strange discomfort in my left chest accompanied by difficulty breathing. Initially, I thought these symptoms aligned with anxiety, but they persisted long enough to cause concern. To rule out any serious conditions, I underwent a blood test, which fortunately came back normal. Despite the positive results, I continued to feel unusual pains in my heart region and a peculiar ache in my lower abdomen. The doctor had previously mentioned my poor posture and identified an issue with my occipital nerve, which I’ve somewhat addressed. Now, though, I find myself having intermittent back pain and brief discomfort just beneath my left lung. These pains are indeed strange; they don’t always last long, sometimes just fading after five seconds or they might stick around for several minutes. I tend to spend a lot of time in bed and don’t often leave the house, yet when I do, these pains still occur. Thankfully, they aren’t debilitating, but I can't help but feel anxious thinking something might be significantly wrong with my health. It’s unsettling and I’d prefer not to dwell on such thoughts. To summarize: I experience chest pain in my lower left quadrant, specifically near my lung, alongside a mild but uncomfortable sensation that waxes and wanes. Additionally, I suffer from headaches located on the upper left side of my head. I apologize for any grammatical errors as I used voice-to-text for this message. Another detail that might be relevant is that I have recently quit vaping, now almost 22 days ago, and I wonder if this could be part of the recovery process.
Understanding Kidney Pain: Should You Be Concerned?
As a 15-year-old assigned female at birth (AFAB), I've been dealing with acid reflux, although I've been neglecting to take any supplements. I also have scoliosis, which I doubt is linked to my current issue. Recently, I have been experiencing pain in my kidney area, specifically in my back, where my kidneys are situated. My mother suggested that this discomfort might indeed stem from my kidneys. For several months now, I haven't pinpointed the cause. I typically consume about 1 to 1.5 liters of water daily, and occasionally I drink cola, though I've reduced that due to my reflux. I sometimes have peach juice or plain tea, but those drinks have become quite infrequent. Despite my fluid intake, it seems my pain level remains consistent regardless of what I drink. The pain primarily affects my right kidney, but during more intense episodes, I also feel discomfort in my left kidney. I've tried lying down and applying gentle pressure to the area, which provides a bit of relief. Aside from occasional bladder discomfort today, I haven't experienced any additional pain that relates to my kidneys, aside from the persistent back pain from scoliosis and the usual stomach and chest pains from my reflux. Is it necessary for me to consult a doctor about this concern? 🥺 I am hesitant to go unless it's truly serious because I was hospitalized last summer due to undiagnosed tics and twitches—likely anxiety-related—and I spent the entire winter seeing doctors for this issue and my scoliosis. I’m also worried about missing school due to more medical appointments, especially since my doctor has a packed schedule, and I'm uncertain if she would prioritize my concern if it doesn't seem urgent. When I was hospitalized last summer, tests including urine and blood analysis showed no significant issues, so I'm unsure whether this warrants another visit now.
Persistent Shin Discomfort
For the past year, I have been grappling with ongoing discomfort in my shins. Despite consulting multiple physiotherapists and doctors, I have yet to find a solution to my problem. My routine has included extensive strength training targeting my hips, glutes, calves, and lower leg muscles. I've also taken steps to improve my running form and have experimented with various recovery techniques, such as foam rolling and using massage devices. No matter what I try, the pain persists, specifically on the inner side of my lower legs. Initially, I suspected that I was suffering from shin splints. However, given my varied attempts at treatment and the lack of improvement, I am starting to believe that the issue might be something different. Even mundane activities, like walking around at home, have become increasingly uncomfortable, not to mention my inability to ride a stationary bike without experiencing pain. If anyone has any insights or recommendations that could assist me in alleviating this issue, I would be extremely grateful. Thank you for your help! I'm a 20-year-old male, standing at 5 feet 8 inches and weighing 70 kilograms.
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.