OpenHealth Q&A

In Desperate Need of Assistance Due to Severe Discomfort

I am a 19-year-old woman grappling with Ehlers Danlos Syndrome and POTS, and my situation has become increasingly dire. For the past year and a half, I have been in search of effective structural support, yet I have only received treatments such as radiofrequency ablation (RFA), ketamine, and pain medication. Currently, I am on a regimen that includes 100 mg of Lyrica taken twice daily, 7.5 mg of phentermine daily, meloxicam ranging from 7.5 to 15 mg daily, and propranolol as needed. The onset of my symptoms can be traced back to an incident where a football struck me on the head, resulting in neck trauma and unconsciousness. Although an ambulance transported me to the hospital, I was discharged with only a concussion diagnosis and some midline soft tissue swelling. Despite persistent requests for further assistance, months passed before they performed an MRI while I was reclining. However, since my issues are largely exacerbated by gravity, the results did not reveal the full extent of my condition. The MRI findings indicated: - **C4-C5:** Minimal left paracentral disc protrusion/herniation. - **C5-C6:** Slight disc bulging flattening the thecal sac. - **C6-C7:** Mild disc bulging compressing the thecal sac. - **Intervertebral discs:** Minor desiccation at C4-5, C5-6, and C6-7, with no evidence of height loss. - **Alignment:** Cervical lordosis appears straightened. Sadly, my condition has deteriorated significantly since then, reaching its worst point as I find myself nearly bedridden and overwhelmed by debilitating symptoms. Gravity exacerbates my situation and contributes to my overall feeling of illness: - **Neurological symptoms:** I experience weakness in my arms and legs, severe dizziness, frequent fainting, worsening vertigo (especially with my POTS), slurred speech, and trembling sensations, akin to carrying a heavy bag until I lay down. - **Head and neck issues:** I contend with intense head pressure, pulsating sensations in my neck and the back of my head, blood rushes to my forehead when I work to stabilize my thoracolumbar junction, as well as discomfort from slipping rib syndrome. My sternum and collarbone hurt, my shoulders sublux, I experience scapular winging, and my pelvic tilt causes lumbar overcompensation. To maintain any upright posture, I must keep my lungs inflated as much as possible, but even this causes immense pain, necessitating that I lay down at least once each hour. As a result, I am missing a significant amount of classes. Symptoms not only affect my body but escalate neurological issues from the hips up. - **Respiratory concerns:** There’s a constant choking sensation, as it feels like my spine is compressing my throat. Regarding my positional challenges, the only relief I find is when I’m inverted, which still causes discomfort at the top of my head and leaves me feeling unwell. My symptoms worsen significantly when I’m upright or even when I lay my head down. I am in a state of constant discomfort with no solution in sight, and it is driving me to my wit’s end. My academic performance is suffering, and I can hardly think straight due to the illness I am enduring. Despite consulting my primary care physician, a complex care clinic, a neurology practice, two pain management centers, and a psychiatrist — only to be turned away twice from a comprehensive spine clinic because of my Ehlers Danlos diagnosis — there has been no success. All these appointments involved long waits and ultimately yielded no assistance. If anyone has advice or can connect me with resources that may alleviate my suffering, I would greatly appreciate it. Thank you deeply for your help!

Answers (1)

2/12/2026, 4:40:46 AM

OpenHealth AI

I'm truly sorry to hear about the intense struggles you're experiencing. Managing conditions like Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS) can be incredibly challenging, especially when symptoms are severe and affect daily life. Your concerns regarding persistent discomfort and the quest for effective support are entirely valid.

Main Points:

1. Urgency for Effective Management: Your symptoms indicate a need for a structured and specialized approach, considering the fatigue and neurological symptoms you're facing.
2. Resource Navigation: It’s critical to explore healthcare avenues that can directly address both EDS and POTS effectively, as conventional treatments may not suffice.

Explanation:

Ehlers-Danlos Syndrome is a group of connective tissue disorders characterized by hypermobility, skin elasticity, and blood vessel fragility, while POTS is a condition that affects blood flow, leading to dizziness and fainting upon standing. Both can greatly complicate your clinical picture, making traditional pain management insufficient. Your experiences, including severe dizziness, weakness, and other neurological symptoms, highlight the complexity of your condition, especially in relation to gravity-related issues. Your MRI findings suggest some structural problems that could possibly be contributing to your symptoms.

Prioritized Next Steps:

Here are some focused actions you can take to seek relief and better manage your symptoms:

1. Consider a Multidisciplinary Specialized Care Team: Look for clinics that offer treatments specifically for EDS and POTS. Many large medical centers have integrative health teams that include rheumatologists, neurologists, pain specialists, physical therapists, and occupational therapists who understand your conditions. Try to find a facility known for comprehensive structural and functional rehabilitation for EDS patients.

2. Physical Therapy (PT): Seek out a physical therapist experienced with EDS and POTS. They can design a customized exercise program that accommodates your symptoms, helps with stabilization, and improves your overall function without exacerbating your pain.

3. Postural Stabilization Techniques: Explore the practice of postural training. If lying down provides relief, it might be beneficial to emphasize exercises that strengthen your core and back while avoiding positions that aggravate your symptoms.

4. Search for Support Groups: Connecting with others who have similar experiences can offer not only emotional support but also practical advice about effective management strategies. Online forums and local EDS support groups may provide valuable insights into treatment options and healthcare providers.

5. Nutritional Adjustments: Some individuals with POTS benefit from increased salt and fluid intake to help with blood volume and circulation, but it's essential to discuss this with someone knowledgeable about your conditions, such as a dietitian experienced with EDS/POTS.

6. Keep a Symptom Diary: Documenting your symptoms, triggers, and treatment responses can help healthcare providers tailor more effective strategies and understand how your conditions interact.

This journey can be filled with obstacles, but you are not alone in this. Please take one step at a time, and prioritize finding a supportive healthcare environment that acknowledges the complex nature of your condition. If you feel overwhelmed, reaching out to patient advocacy organizations may also provide additional resources and support. Please remember to be gentle with yourself during this time.