Seeking Insights on Dysautonomia and Autoimmune Concerns at 18
Approximately four months ago, I experienced an unexpected low-grade fever (around 100°F). Following this, I endured a period of two weeks feeling as if I had caught a severe cold or the flu. Since then, the fever has recurred sporadically. Soon after, I started noticing muscle weakness, unexplained weight loss, gastrointestinal issues, profound fatigue, and discomfort in my muscles and joints. At one point, simply standing for a few minutes made me feel nauseous and lightheaded. Although I can now stand for longer durations, I still struggle with feelings of weakness immediately after getting up, which seems to improve within a few minutes. My limbs frequently feel too weak to engage in activities or too heavy to manage independently. Since then, I’ve also experienced intermittent cold-like symptoms. Eight months ago, in October, I noticed the emergence of an unusual rash on my face, consistently appearing on the right side, sometimes extending to my neck, nose, and forehead. Initially, we thought it was separate from my other symptoms, but the connections remain uncertain. This rash first surfaced while I was taking Zoloft and continued through the use of four other antidepressants, as well as after I discontinued all medicational treatments. I'm unsure if this is relevant to my current condition or not. I have undergone several blood tests and consulted a rheumatologist, who concluded that my situation does not appear to be autoimmune in nature. Currently, the most persistent issues I'm facing include nausea, fatigue, constipation, and muscle weakness. I am reaching out to see if anyone has insights, suggestions, or potential leads. At this stage, I am searching for any new perspectives as I navigate this complex situation!
Answers (1)
7/3/2025, 11:50:37 PM
OpenHealth AI
It sounds like you are experiencing a complex set of symptoms that are understandably concerning. You’re dealing with intermittent fevers, profound fatigue, muscle weakness, gastrointestinal issues, nausea, and a facial rash. Given that you’ve consulted with a rheumatologist and had various tests done, it’s good to know you are actively seeking insights and patterns in your symptoms.
Explanation
Dysautonomia is a term that refers to disorders affecting the autonomic nervous system (ANS), which controls involuntary bodily functions like heart rate and digestion. Symptoms like lightheadedness when standing, fatigue, and muscle weakness may align with dysautonomia. The rash you described, especially since it has persisted alongside other symptoms, warrants further consideration, as it might suggest a systemic issue even if autoimmune conditions were ruled out.
Given the recent onset and combination of symptoms, it still might be wise to consider monitoring for various underlying conditions, including:
- Infections: Chronic infections can sometimes lead to systemic symptoms such as fatigue, fevers, and joint pain.
- Hormonal imbalances or thyroid issues: These can often cause fatigue, weight changes, and muscular symptoms.
- Nutritional deficiencies: Insufficient vitamins or minerals can also contribute to fatigue and muscle weakness.
Next Steps
-
Keep a Detailed Symptoms Diary: Record the frequency, duration, and intensity of your symptoms, including the rash. Note any potential triggers or changes in lifestyle that coincide with symptom fluctuations. This will help you and healthcare providers analyze patterns over time.
-
Monitor Your Blood Work: Pay attention to tests that evaluate autoimmune markers, complete blood count, thyroid function, and vitamin levels (especially B12, D, iron, and magnesium). You may want to follow up on any abnormal results for further evaluation.
-
Explore Dysautonomia: Research autonomic nervous system issues, as dysautonomia can manifest with your symptoms. Consider lifestyle adjustments such as increased hydration, compression garments, and gradual position changes when getting up.
-
Evaluate Mental Health and Stress Levels: Chronic health issues can impact mental health, so consider stress-management techniques or engaging in supportive activities that promote mental wellness.
-
Consider a Multidisciplinary Approach: If symptoms persist or worsen, seek a second opinion from other specialists, such as a neurologist or a specialist in chronic fatigue syndrome/mechanisms of dysautonomia.
Final Thoughts
Your situation is intricate, but by actively tracking your symptoms and exploring these avenues, you may uncover insights that contribute to a clearer diagnosis or management plan. Remember to be gentle with yourself during this process. It's important to prioritize self-care and seek support from trusted friends, family, or support groups as you navigate these challenges.
Related Questions
28-Year-Old Male Experiencing Scalp Sensations Post-Amitriptyline Treatment
I am a 28-year-old man in generally good health, without any cardiac concerns. Approximately a month ago, I encountered intense pain localized to one side of my head, which was unresponsive to paracetamol. However, a single dose of a migraine treatment provided substantial relief. Following that, I began a regimen of amitriptyline, starting at a nightly dose of 10 to 25 mg. While my head pain has diminished significantly—by about 90 to 95%—I now experience occasional uncomfortable sensations on my scalp. These feelings include pins and needles, a cooling sensation, and some crawling feelings near my hairline and ears. There are fleeting moments where I feel brief throbs lasting a second, but I do not have any persistent headaches. To clarify, I do not experience any of the following: - Nausea - Weakness in my limbs - Numbness - Changes in my vision - Coordination difficulties - Seizures The symptoms I have are transient, shifting around and often intensifying when I become conscious of them or as the day progresses. I would like to know: Is it common to experience these sensations during the recovery stage following episodes of neuralgia or migraine-like discomfort? Additionally, could the amitriptyline potentially be causing these temporary paresthetic sensations? I am seeking some reassurance or advice on what is typically observed during this healing process. Thank you.
Concerns About My Toes
Age: 30, Female Currently, I am on the lookout for a reputable podiatrist in my vicinity. However, I've encountered a perplexing issue with my foot. Just last night, I noticed a growth on the side of my toe, something entirely new to me. I maintain a nutritious diet and have a demanding job that requires me to be on my feet quite often. My footwear includes brands such as Brooks Ghost Runners, Hoka Bondi 9’s, and Nike Motiva’s, and I don’t opt for restrictive socks. I also apply Vick’s Vaporub to my feet, a practice handed down from my family, and stick with simple, non-fragrant lotions like Vanicream and CeraVe SA Cream for my skin. In addition, I am curious about the my big toenail's change in color. What might be the underlying reasons for this? Also, I have these persistent dark spots on my toes that I've struggled with since my days on the runway. Despite my efforts, nothing has succeeded in lightening or diminishing their appearance. I'm just looking to determine if there might have been a factor from the past that could have contributed to these issues. I’m not sure what else to include, but I’m open to answering any questions you might have. Thank you for your attention! Best wishes from a worried soul!
Strange Jelly-Like Substance Observed from Wound
I’m a 21-year-old female living with an auto-inflammatory condition known as hidradenitis suppurativa (HS). Recently, I've experienced a concerning issue with one of my wounds. This particular wound causes significant pain and excessive bleeding. However, whenever I attend to it, I tend to find this unusual jelly-like substance present within it. Interestingly, this phenomenon has only occurred with this one wound and not any of the others I have. The bleeding seems to persist until I manage to remove this jelly substance, after which it typically slows down and comes to a halt completely. I’m seeking insights into what this might signify so that I can effectively discuss it with my healthcare provider.
Battling Chronic Nausea and Vomiting for Over Two Years
For the past two years, I (age 26, female) have been enduring an incredibly challenging health situation. I experience intense nausea daily and find myself vomiting numerous times, with almost nothing providing relief. To provide some background, I’m from West Texas and I currently weigh around 190 pounds, standing at 5’7”. Initially, my weight was about 211 pounds when these symptoms began, and it fluctuates frequently between 190 and 225 pounds. I engage in vaping and consume THC. Previously diagnosed with hypothyroidism, my condition seemingly resolved, according to my healthcare providers. Additionally, I have polycystic ovarian syndrome (PCOS). I have consistently faced irregular bowel movements, with stools that are loose and sometimes appear to have mucus. Compounding my struggles, I've also suffered from migraines. I have had an IUD for over five years, experiencing two insertions of the Kyleena device. In December 2022, my battle with health took a severe turn when I was diagnosed with stage 4 Hodgkin’s Lymphoma, requiring chemotherapy treatment, specifically AVBD (Apologies for not recalling the exact medication names). By July 2023, I had fortunately achieved remission. However, after reaching remission, my vomiting worsened, transforming from primarily white foam to a mixture of 80% bile, any food I attempt to consume, and still white foam. This intense vomiting, accompanied by significant pain in my upper back, escalated to more than eight episodes daily by November 2023. At that time, THC seemed to be the only avenue for me to retain any food. During this tumultuous period, I consulted various doctors who, after confirming I wasn’t pregnant, attributed my symptoms to Cannabinoid Hyperemesis Syndrome (CHS). Immediately, I ceased THC consumption for over six months, yet the vomiting continued unabated. Each time, doctors would prescribe ondansetron, regardless of my claims that it provided no relief. I experimented with various diets recommended by medical professionals, but there were no improvements in my condition. Eventually, I obtained a referral to a gastroenterologist who intended to perform an endoscopy. However, the procedure was prohibitively expensive even with insurance, and thus was never conducted. This doctor also ordered blood tests to rule out several gastrointestinal disorders, such as Crohn's disease, Irritable Bowel Syndrome (IBS), and gluten sensitivity, but all results came back normal. Afterward, I had another appointment with a different gastroenterologist, but the doctor failed to meet with me. Instead, a nurse informed me that the doctor had merely recommended promethazine without conducting any tests or scheduling further visits. When I mentioned the possibility of gallbladder issues, the doctor laughed dismissively at my suggestion. Discussing my situation with my oncologist, he suggested that my heightened sensitivity to food odors stemmed from my chemotherapy experiences while I was working in fast food. While food smells indeed affect me, I'm primarily triggered by medical scents such as rubbing alcohol and cleaning agents. This ongoing ordeal has been overwhelmingly distressing. I now experience episodes of vomiting accompanied by bright red blood, presumably due to a throat tear. When I first encountered this troubling symptom, I consulted a doctor who appeared unfazed and prescribed a promethazine suppository, which does help but makes me extremely drowsy. My nausea persists nearly around the clock, often feeling as if there’s a heaviness in the upper part of my abdomen. I frequent urgent care facilities when my symptoms intensify, only to be met with minimal assistance since this is a chronic issue. Currently, I lack a primary care physician. Whenever I sought one, I encountered skepticism regarding my condition, with some healthcare professionals implying that I was exaggerating my symptoms. Though many physicians who do take my situation seriously seem baffled, I've lost count of the diverse medical experts I've consulted about these ongoing issues. If anyone has insight or suggestions, I would genuinely appreciate it. I can share my latest bloodwork results if that would be helpful—just let me know!
Strange Stomach Sensation Leading to Waking Up
Greetings. I'm a 36-year-old male, standing at 172 centimeters and weighing 90 kilograms. I don't take any medications, nor do I smoke. I've been living with diastasis recti for several years now, and I may also have irritable bowel syndrome (IBS). Additionally, I deal with fatty liver and kidney stones, though I assume these last two conditions are not related to my current concern. Occasionally, I experience a peculiar sensation that jolts me awake; it feels like a quick pulsing in my stomach. I’ve noticed it tends to affect the left side when I’m lying on my left side and the right side when on my right. Remarkably, it can occur even when I’m on my back. This strange feeling often escalates into a surge that fully rouses me. Alongside this, I sometimes feel prickling sensations throughout my body and fleeting lightheadedness. When this sensation disturbs my sleep while I’m turned to my side, shifting onto my back or the opposite side might alleviate it, but not always. In instances where I awaken while lying on my back, I discovered that gently pressing my hands on either side of my stomach can help, as can rising to a sitting or standing position. However, during my last two episodes—one a couple of weeks ago and another tonight—those techniques weren’t effective right away, which made me feel a bit anxious, prompting me to seek advice. Does anyone have insight into what might be going on? By the way, I’ve undergone routine ultrasound examinations of my abdomen by two different physicians during check-ups, both of whom assured me that everything appears normal, including my abdominal aorta and internal organs. They didn’t identify any issues at that time.