OpenHealth Q&A

Is This a Case of CFS Leak?

I am a 26-year-old female, weighing 120 lbs and standing at 5'2". I've been dealing with various chronic health issues for some time now, and we are currently in the process of seeking a diagnosis for hypermobile Ehlers-Danlos Syndrome (hEDS) through a geneticist appointment that we haven't scheduled yet. Lately, I've experienced a range of new symptoms, and when I researched them, I stumbled upon the concept of a cerebrospinal fluid (CSF) leak. This prompted me to revisit previous symptoms that I had dismissed earlier. Here’s a comprehensive list of my symptoms and health issues, including the newer ones that led to my concern. Should I be worried about a potential CSF leak? Does this fit the profile for hEDS? I might remember additional details later and update this post accordingly. Thank you for your insights! **Diagnosed Conditions:** - Alopecia Areata (diffuse) - Postural Orthostatic Tachycardia Syndrome (POTS) - Chronic Appendicitis - Raynaud's Syndrome (diagnosed in childhood; still affecting my hands and feet) - Tentative diagnosis of Hidradenitis Suppurativa (HS) - managed as if diagnosed despite no formal confirmation. **Current Symptoms:** - Extreme discomfort while standing, experiencing weakness in muscles or a feeling of overextension, often needing to lean or apply weight on one leg for relief. - Occasionally, my head feels unusually heavy or unsteady. - Discomfort while sitting or lying down; muscles can feel either weak or excessively stiff, frequently followed by a hot sensation in my legs, making them feel like they are burning. - My limbs often fall asleep in typical positions, leading to prolonged tingling and numbness before circulation returns. - I experience temperature regulation issues, often feeling freezing cold despite the environment or suddenly becoming excessively hot and sweaty with consistently cold extremities. - Blood pooling in my hands, legs, and feet while being active or in various positions causes a very uncomfortable sensation that feels warm and stiff. - Possible livedo reticularis, evidenced by a reddish-blue net-like pattern mainly on my legs, exacerbated during cold temperatures. - Blurred vision accompanied by slight pain, pressure, and headaches, with no diagnosis confirmed by a physician. - Allergic-like reactions with no definitive cause, such as to apples or spices, where no real allergy was identified by a doctor, and additional reactions to unidentified allergens in childhood. - Frequent tearing of my eyes without any identifiable trigger. - Regular bouts of nausea, motion sickness in cars, and random episodes of discomfort. - Alternating between constipation and diarrhea for unclear reasons, with bloating that can persist for days. - Occasional acid reflux episodes. - Various types of pain, including deep bone discomfort, sharp stabbing sensations, muscle soreness, and organ-like pain sensations. - Persistent joint pain that varies in intensity, particularly notable in the knees and back, alongside discomfort in elbows and wrists. - Sharp, intense back pain that can restrict movement, sometimes causing a locking sensation, also affecting my neck due to a prior injury. - A history of significant chronic pain in childhood, often written off as growing pains, attributed to gymnastics and related injuries, especially affecting my knees and general instability in my wrists and ankles. - Confirmed hypermobility in knees and shoulders, with suspected hypermobility in elbows and hands capable of touching the ground. - Currently experiencing reduced flexibility and increased muscle tension. - Sudden episodes of sharp chest pain, often triggered by breathing. - Minor popping and cracking in my chest and neck with minimal movement. - Joints, like knees and elbows, locking in painful positions until manually adjusted. - Experiencing pain in the pelvic region during certain movements, accompanied by a weak pelvic floor sensation. - Notable changes in menstruation, with increased heaviness and pain. - Bladder issues such as recurrent urinary tract infections, flare-ups of interstitial cystitis, urgency, and incontinence that have persisted since childhood. - Overwhelming chronic fatigue accompanied by cognitive fog and memory difficulties. - Sleep disturbances, alternating between insomnia and excessive daytime sleepiness. - Regularly waking up with soreness and headaches. - Persistent tinnitus. - Previous dermatologist treatments for HS with injections and topical antibiotics, though I am no longer under her care. - Notable issues with scarring and chronic dermatographia. - Prone to ingrown hairs due to multiple hairs growing from single follicles. - Experiencing intense muscle spasms and hyperactive muscle twitching. - Jaw pain and fatigue, particularly during meals, along with cracking during jaw movement. **Recent Developments:** - Experiencing ear pain and fullness, sound sensitivity accompanied by discomfort, with negative infection screening at urgent care. - Increased bothersome tinnitus. - Headaches triggered by standing that resolve when lying down. - Clear, watery discharge from one nostril, primarily when bending over, which began last fall but was previously overlooked. - A sensation of liquid moving down my throat, also started last fall without prior concern. - Metallic, dry taste in my mouth. - Stiff and sore neck with pain radiating throughout the shoulders and between the shoulder blades, reminiscent of post-surgical discomfort. - New vision disturbances, experiencing blurriness and occasional double vision. - Elevated levels of nausea and dizziness. - Decreased appetite and possibly more frequent sensations of numbness and tingling in my limbs. Unfortunately, I am also a smoker and am currently prescribed Zyprexa, Vyvanse, Gabapentin, Ativan, and Suboxone.

Answers (1)

8/10/2025, 6:40:56 PM

OpenHealth AI

Based on your detailed description, you are experiencing a range of complex symptoms, and it's understandable to have concerns about potential causes, including a cerebrospinal fluid (CSF) leak. It’s important to approach this methodically, prioritizing symptom management and gathering further information.

Main Points:

1. Potential for CSF Leak: Some of your recent symptoms, like headaches that worsen with standing and resolve when lying down, can suggest a CSF leak, though they could also relate to other conditions.
2. Hypermobile Ehlers-Danlos Syndrome (hEDS): Many of your symptoms align with hEDS and related disorders; however, a definitive diagnosis will require further medical assessment.
3. Symptom Monitoring: Keeping a record of symptoms will be helpful for your healthcare team.

Explanation:

A CSF leak occurs when the cerebrospinal fluid escapes from the protective layers surrounding the brain and spinal cord. Symptoms can include headaches, neck pain, tinnitus, and a sense of pressure or heaviness in the head. Your mention of headaches worsening with standing, neck stiffness, and ear fullness could indicate this condition, but these symptoms can also overlap with issues related to hEDS, POTS, or other neuromusculoskeletal disorders.

Next Steps:

1. Symptom Tracking:

   • Create a daily diary of your symptoms, noting their intensity, triggers, and any patterns you observe. This can be highly valuable when discussing your case with a physician.

2. Seek Medical Attention:

   • While I cannot direct you to a specific medical appointment, consider scheduling consultations with a neurologist or an Ehlers-Danlos expert. Bring your symptom diary to ensure your concerns are addressed comprehensively.

3. Hydrate and Manage Symptoms:

   • Stay well-hydrated, as some of your symptoms, like headaches and fatigue, can be exacerbated by dehydration.
   • Engage in gentle activities or stretches that suit your comfort level, but avoid any movements that trigger pain or discomfort.

4. Consider Risk Factors:

   • Smoking can impact circulation and overall health, so it may be worthwhile to explore quit strategies if you feel open to them, as this can improve your general condition and potential healing.

5. Gather Support:

   • Discuss with family or friends about your feelings and symptoms. Emotional support can be very helpful as you navigate your healthcare journey.

6. Manage Stress and Sleep:

   • Given your sleep disturbances, implementing a calming bedtime routine might help improve sleep quality, aiding in better overall health management.

Closing Thoughts:

Your situation is complex, and it's essential to take a measured approach to address your symptoms and pursue a diagnosis. Maintaining open communication with your healthcare providers while actively tracking your health will empower you in this process. Don't hesitate to reach out with any additional details or updates.