OpenHealth Q&A

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:

1. Your symptoms—such as intense headaches, blurred vision, tingling sensations, and new inflammation—could suggest serious complications related to your current autoimmune status.
2. 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.
3. 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:

1. 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.

2. 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.

3. 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.

4. 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.

5. Manage Stress and Anxiety: Practice relaxation techniques, such as deep breathing or mindfulness, to help manage the anxiety related to these symptoms.

6. 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.