26-Year-Old Woman Battling Chronic Illness and Unexplained Symptoms
I find myself in a perplexing predicament, as do my physicians. I carry diagnoses of POTS (Postural Orthostatic Tachycardia Syndrome), hEDS (hypermobility Ehlers-Danlos Syndrome), potential MCAS (Mast Cell Activation Syndrome), Fibromyalgia, SIBO (Small Intestinal Bacterial Overgrowth), among several other gastrointestinal complications. Additionally, I have a history of vitamin D deficiency and anemia, for which I received infusion treatments. I also battled Epstein-Barr Virus (EBV) and experienced two COVID-19 infections in 2022. The latter seemed to have exacerbated my EBV, leaving me in a drastically altered state of health since then. Numerous specialists have evaluated my case, yet my endocrinologist and rheumatologist remain puzzled by my ongoing issues. Here’s a list of some of the unusual symptoms I am grappling with: • Swelling in my fingers and around my eyes, which occasionally extends to my legs. • Diagnosed with periungual erythema. • My menstrual cycles are regular, yet I’ve noticed unexpected large clots in recent months. • Certain patches of skin go numb and become exceedingly sensitive to touch. • Intense leg pain that can persist for days, often accompanied by a burning sensation at night. • Significant spider veins on the backs of my thighs that are tender to the touch. • Intermittent dryness in my mouth and eyes. • Fluctuations in my weight. • Instances of nerve pain. • Episodes of hair loss that come and go. • Coldness in my extremities. I realize this is an extensive list, and while these symptoms may not seem related, I would greatly appreciate any insights or thoughts on my situation!
Answers (1)
8/24/2025, 2:30:55 AM
OpenHealth AI
It sounds like you're facing a complex and challenging health situation, given your multiple diagnoses and ongoing symptoms. While it isn't possible to provide a definitive diagnosis or treatment plans without a thorough examination, I can offer some insights and practical steps that may help you manage your symptoms effectively.
Main Points
- Your array of symptoms may relate to your existing diagnoses, especially POTS, hEDS, and potential MCAS.
- Monitoring and managing symptoms are critical, particularly those that seem to fluctuate or worsen.
Explanation
Your symptoms can indeed be interconnected, particularly due to the nature of conditions like hEDS and POTS, which can both affect circulation and connective tissue. The swelling, pain, and changes in temperature in your extremities might relate to orthostatic intolerance (common in POTS) and connective tissue issues (hEDS). Such complexities can sometimes exacerbate the challenge of achieving a diagnosis and effective management.
- Periungual erythema and sensitivity in the skin might indicate vascular involvement or inflammation, while issues like hair loss and nerve pain could be linked to autonomic dysfunction or related conditions.
- The menstrual irregularities, such as increased clotting, could also indicate changes in blood flow and clotting dynamics, which may be influenced by macro or microvascular changes from your existing conditions.
Next Steps
-
Symptom Diary: Start keeping a detailed symptom log. Note when symptoms occur, their intensity, duration, and any potential triggers (e.g., stress, diet, physical activity). This information will be valuable for you and your healthcare team.
-
Hydration and Salt Intake: For POTS, ensuring proper hydration and an increased salt intake can help manage symptoms. Speak to a specialist about potential adjustments in your diet, particularly regarding sodium and light meals.
-
Gentle Movement: Incorporating gentle, low-impact exercise (like walking or swimming) can support circulation and help manage some connective tissue symptoms. Physical therapy may also offer personalized techniques to reduce pain and improve joint stability.
-
Nutritional Support: Focus on nutrient-rich foods to address your anemia and vitamin D deficiency. Foods high in iron (like legumes, red meat, and leafy greens) and vitamin D (such as fatty fish and fortified foods) can be beneficial. Follow up with your healthcare provider on your current vitamin levels to guide supplementation.
-
Consult Specialists: Given the complexity of your case, consider a comprehensive review with a specialist in autonomic disorders or a geneticist experienced in EDS. A multidisciplinary team might help connect the dots between your symptoms.
-
Support Groups: Connecting with others who have similar experiences can provide emotional support and practical advice. Consider joining online communities focused on chronic illness, POTS, or EDS.
Lastly, remember to prioritize your mental health amid these challenges. It's vital to find ways to manage stress, whether through mindfulness practices, therapy, or other support systems. You are not alone in this, and having a supportive network can make a significant difference. If any of your symptoms worsen or new symptoms arise, documenting these will help facilitate future discussions with your healthcare team.
Related Questions
Unexplained Rash and Swelling Issues
A 50-year-old male of African heritage experienced a significant car accident two decades ago, resulting in the insertion of pins in one of his ankles. He has reported occasional swelling in his feet when standing for extended durations; however, he does not suffer from any persistent medical issues or take prescribed medications, apart from regular vitamin supplementation, including vitamins K and D, magnesium, as well as chondroitin and glucosamine. Currently, I am seeking insights because I am in a location where access to specialists is limited, and medical professionals have not yet been able to diagnose his condition. This individual, who is a relative of mine, has developed unusual swelling of the face, neck, hands, and from the knees down to his feet over the past four months. Notably, there is no swelling in his abdomen. The change in his facial appearance has been so significant that it has left long-time acquaintances unable to recognize him. The swelling resembles a severe allergic response, similar to what one might observe after reacting to substances like codeine. Blood tests revealed elevated GGT levels, but both liver and kidney functions appeared normal. Thyroid hormone levels were also within the standard range, though there were indications of anemia. The physician is conducting tests for thyroid peroxidase (TPO) antibodies to rule out thyroid issues, especially given the family history of thyroid disorders. An abdominal ultrasound and echocardiogram are also being performed, in addition to chest X-rays. However, the doctor is particularly perplexed by a rash that has developed in several locations on his body, including behind and within his ears. His skin tone is dark, while the rash appears significantly lighter and is flat, resembling areas that are losing pigmentation. The condition that comes closest in description to this rash based on online research is systemic sclerosis. The doctor has expressed a willingness to consider external opinions, which is why I’m sharing these details here. If anyone has insights into what this rash might be, or how it relates to the overall condition characterized by the swelling, your thoughts would be greatly appreciated.
Exploring Potential Causes for a Series of Symptoms in a 38-Year-Old Woman
At 38 years old and navigating a variety of health issues, I’m reaching out to understand if what I’m experiencing could be linked to mast cell activation syndrome (MCAS) or perhaps an autoimmune condition. As a trail runner and strength coach, maintaining fitness is important, but lately, I’ve been facing a puzzling array of symptoms. I’m a mother to a three-year-old, stand at about 178 cm and weigh 67 kg. Although I generally feel fit, I’ve been struggling with various fluctuating ailments that impact multiple areas of my body. Some of these issues have persisted for nearly a decade, while others have only emerged in recent days. They intensified about a month ago, prompting my current concerns. **Eye Issues:** I experience noticeable swelling upon waking, a droopy eyelid, and an often uncomfortable awareness of my eyes. My vision has deteriorated in the past six months; despite an ophthalmologist confirming that my eyes are structurally sound with only minor refractive changes, I find that fatigue and physical activity greatly exacerbate this decline. **Gastrointestinal Concerns:** I carry a diagnosis of IBS and malabsorption dating back 15 years. I deal with colon cramps and abdominal discomfort that seem to correlate with certain foods. Triggers range from poppyseeds to high fiber content and specific spices. My IgG levels are notably elevated for poppyseed, egg white, and wheat. **Skin Problems:** An acne-like rash appears on my face, shoulders, and back, often linked to sun exposure. I experience a burning sensation that occasionally leads to painful skin during showers, along with flushing and itching related to various factors such as food, detergents, and cosmetics. Recently, a persistent itch developed on my left thigh, lasting three continuous days. **Neurological and Musculoskeletal Symptoms:** I notice tingling sensations in my arms and calves that happen during sneezing or exhaling. This phenomenon began around the time my health issues flared up more noticeably. I also feel cold in my feet when I cough and notice my hands sometimes feeling both cold and hot at the same time. My pinkies and ring fingers occasionally seem to clench without my control, adding to the overall odd sensations. I frequently deal with shifting muscle and joint discomfort throughout my body, particularly in the neck and legs. Although I have existing conditions like herniated discs and sciatica, they don’t seem to be directly tied to my current symptoms. Increased fatigue and cognitive fog are now a regular part of my life. In recent months, my coordination has faltered, and I’ve stumbled several times while running, leading to unusual clumsiness. **Other Systemic Manifestations:** Dizziness has become a frequent occurrence when rising from a seated position. I also experience a general sense of malaise and ongoing increases in heart rate variability when my symptoms flare up. Over the past month, my resting heart rate has risen consistently, even during sleep, and I’ve noticed tachycardia following certain meals, particularly those rich in processed ingredients. My history includes steroid treatments with prednisone and pulmicort, and I’ve had recurrent respiratory infections that can quickly escalate. I also dealt with COVID-19 and pneumonia in 2021, only truly recovering from those effects relatively recently. Throughout my postpartum experience, I faced challenges like a rash around my mouth in response to specific antibiotics and painful swallowing at times due to geographic tongue. Interestingly, my dog has become unusually attentive when I feel unwell, a behavior I’ve not observed before. **Medical Tests and Findings:** My ANA test returned positive with a low titer of 1:80, showing homogeneous nuclear and cytoplasmic patterns. Most immunoglobulin levels came back normal, yet the IgG food allergen screen revealed significant reactions, particularly to poppyseeds, wheat, and egg whites. Tests for C3, C4, CRP, and eosinophils were all within normal range, and basic laboratory assessments were satisfactory. An ophthalmic evaluation showed typical findings aside from minor refractive concerns. I’m scheduled for a bronchoprovocation test this coming Monday. After stopping antihistamines five days ago, I’ve noted some throat discomfort, which raises the question of whether I'm dealing with an infection, possibly due to my son’s interactions at kindergarten, or if allergies are re-emerging. I've also experienced consistent nasal drainage. Given the range and variability of my symptoms, along with their apparent connections to food and environmental factors, I’m eager to learn if this could indicate MCAS or another underlying autoimmune condition. **Questions I Have:** 1. Do my symptoms align more closely with MCAS or could they suggest another health issue, such as an autoimmune or neurological disorder? 2. Which specialists should I consult first to begin addressing these issues? 3. Are there any particular lab tests or imaging studies you would recommend that could help clarify my situation? I genuinely appreciate any guidance or insights that could assist me on this journey!
Unusual Symptoms Persisting for Months
Experiencing bizarre symptoms for an extended period - Constant, intense pressure in the head, particularly in the forehead and temples - Severe burning feelings throughout the head and body - Full-body numbness accompanied by burning sensations, leading to a sense of disconnection from physical form - Sleeping for over 14 hours daily yet waking up feeling exhausted, inactive, and still drowsy - Profound confusion and disorientation, often feeling mentally blank or in a daze - Frequently zoning out or staring blankly - Struggles with concentration and cognitive processing - Confined to bed, unable to engage in typical daily activities - Visual disturbances including blurriness, halos, starbursts, and rainbow-like distortions - Extreme fatigue and weakness - Feeling entirely estranged from reality - Overwhelmed by sensory inputs, where light and sound exacerbate symptoms - Diminished temperature sensitivity, as cold stimuli (like chilled water or pills) are ineffective - Distorted or muted perceptions of surroundings - Experiencing crackling or popping sensations in the head, notably at the forehead and eye regions - Sudden, stabbing pains in the head that trigger involuntary muscle contractions in various parts of the body - Gradual loss of bodily sensation and difficulty walking, coupled with muscle weakness and popping sounds - Immobilized at times, feeling as if frozen and trapped in a trance-like state - Difficulty in articulating words and expressing thoughts - Uncontrolled spasms or twitching of the body - Ongoing sensation of near-fainting and sensory overload from minor stimuli - Weight loss exceeding 10 pounds - Visual disruptions like halos around light sources and additional visual anomalies - Overall body vulnerability and tremors - Issues with balance, often tripping or bumping into objects - A feeling that the brain is craving additional blood flow and oxygen, making even simple movements or speech a strenuous task **Primary Concerns:** - Sudden and rapid decline in neurological capabilities observed since May 2025. - Significant effects on cognition, mobility, and daily functioning. - Unable to safely care for myself at home; immediate medical evaluation and stabilization required. - Manifestations are progressively worsening and debilitating. - Symptoms remain unchanged despite attempts at rest or sleep. Initial CT Scan: Normal Recent Blood Tests: Normal **MRI Results** **REASON FOR SCAN:** The patient reports headaches that started after visiting a chiropractor 1-2 months ago. Please refer to clinical requisition for comprehensive history. **COMPARISON:** CT results dated June 12, 2025. **FINDINGS:** - The cerebral parenchyma, as well as brain regions including the basal ganglia, brainstem, and cerebellar hemisphere, appear normal at first glance. A notably larger 7 mm fissural cyst is located in the left temporal lobe that connects with a ventricle, which is identified as benign. No significant signal abnormalities detected. No lesions or diffusion restrictions are present. - No signs of cerebral swelling. - The arterial flow in the circle of Willis appears to be normal at the visualized extent. Flow voids maintained within the cerebral venous sinuses, however, the left transverse sinus appears underdeveloped. The bilateral eye sockets reflect normal findings. A slight mucosal thickening is observed in the right posterior ethmoidal air cell, with no notable sinusitis present. Both mastoid air cells are also normal. **CONCLUSION:** No relevant intracranial findings that would account for the patient’s symptoms. The only changes I can recall occurred due to a sunburn and my appointment with the chiropractor on April 30th; I have been consistently receiving chiropractic care for several years without any immediate issues noted post-visit.
Is a Daily Dose of 150mg Prednisone for Six Days Acceptable?
A 61-year-old female, standing at 5 feet 6 inches and weighing 210 pounds, is a non-smoking individual presently taking medications such as Losartan, Simvastatin, Hormone Replacement Therapy, and Omeprazole. She has recently been diagnosed with sudden onset asthma coupled with vocal cord dysfunction, which appears to be triggered by gastroesophageal reflux disease (GERD). For the past three weeks, she has been grappling with a persistent cough but has not experienced any fever, sinus drainage, or phlegm. This has not been her first encounter with such symptoms, as they usually arise following a sinus infection or a bout of COVID-19. Historically, she finds that her usual treatment regimen—which includes Symbicort 165 (two puffs twice daily using a spacer), benzonatate 200mg before bedtime along with Delsym for relief at night, frequent use of Vicks Severe 20mg menthol cough drops (up to 12 a day), and Mucinex—has always successfully alleviated her condition. However, she has never faced a three-week-long cough without some sign of improvement by now, leading her to believe she should have reduced her medication intake by this point. Fortunately, her GERD symptoms are now well-managed thanks to Omeprazole and RefluxRaft, and her lungs have been responding positively. Nevertheless, the unrelenting cough persists, leading to a strain in her abdominal muscles due to the effort of constant coughing. After consulting with her primary care physician yesterday, she received a prescription for a daily regimen of 150mg of prednisone, divided into three doses to be taken with meals. Remarkably, after just one day on this regimen, she has managed to reduce her use of cough lozenges to nine, which is a positive change. However, she is concerned since there were no instructions regarding tapering off the prednisone after the six days of treatment. Is this dosage safe, and should she consider reducing the dosage herself?
77-Year-Old Woman with Advanced Breast Cancer
A 77-year-old woman has been diagnosed with breast cancer affecting her right breast and nearby lymph nodes in her armpit. What is the typical frequency of CT scans conducted by doctors for patients in this situation? Are tumor marker levels the sole criteria for assessing her condition?