OpenHealth Q&A

Navigating Nerve, Muscle, and Cognitive Challenges: Seeking New Solutions

I’m a 35-year-old cis woman (assigned female at birth) living in the USA. I stand 5'7” and weigh 180 pounds, and I have not traveled outside the US in many years. Lately, I’ve been grappling with a perplexing array of symptoms. My primary care physician (PCP) is great, but I feel like we’ve exhausted many options without finding a resolution. These issues have persisted for the past 18 months, and I’m reaching out in hopes that others might have suggestions or insights, whether or not I receive a definitive diagnosis. I just want to improve my quality of life and manage these symptoms. I’ve chosen to use a throwaway account for privacy reasons. Here’s a comprehensive overview of my situation: **Medications:** I currently take Baclofen twice daily, Rizatriptan as needed for migraines, and Albuterol when necessary (primarily during sickness, as I’ve been using it since childhood). **Medical History:** - **Migraines:** I have dealt with migraines since childhood. While Rizatriptan works well for my migraines, it does not help with my current symptoms. I used to experience frequent migraines in my twenties, but now I only have them a couple of times a year. - **Dental Surgery:** I had extra teeth on one side of my face, which required removal along with a maxillary graft and sinus repair. - **Gallbladder Surgery:** I underwent a laparoscopic cholecystectomy in my twenties due to gallstones. - **Joint Issues:** I have a history of subluxing and dislocating joints, especially during sleep (shoulders, hips) or while walking. Flexibility has always been a challenge for me. - **Anxiety Incident:** In high school, I experienced a panic attack during a sports tryout, which resolved before I arrived at the hospital. I was told I might need tests if it occurred again, but I didn’t participate in formal sports afterward. - **Heat Rash:** I used to get heat rashes when exposed to direct sunlight, particularly in childhood, but I avoid the sun nowadays due to frequent sunburns, even when using strong sunscreen. **Social and Work Background:** - Throughout my teens and twenties, I worked between 40 to 65 hours per week in a career that kept me indoors and in controlled settings. This environment kept me fit while being mentally stimulating yet not overly challenging. The job also aligned well with my family's work ethic. - Six months prior to my health issues beginning, I switched to another job that allowed more time at home with my young family. I now work outdoors, which is less stressful and fewer hours (30-45 per week), but since the onset of my symptoms, my hours have further decreased to 10-25 per week due to fatigue and strength issues. - My nicotine consumption, primarily cigarettes for about 15 years, has dwindled to a quarter to one-third of a pack daily, and I am trying to quit without any cessation aids yet. - My longstanding diet is low in red meat and includes rice, occasional fruits, vegetables, and grains. I primarily drink milk, water, coffee, and tea, consuming soda and alcohol very rarely. - Recently, I’ve been experiencing strong cravings for various potato dishes, salt, and beans, especially black, pinto, and kidney beans. I also find myself consuming more salt than ever before. - In my mid-twenties, I had a severe case of mono and shingles, and as a child, I experienced a significant bout of chickenpox. I suspect I may have had COVID-19 at some point, but testing was unavailable at that time. **Current Issues:** - Over the past 18 months, I’ve faced episodes of sensory disturbances and confusion. Symptoms include sudden fatigue, discomfort at the base of my skull, full-body pain (particularly in that area), confusion, difficulty with words, and poor balance. My limbs often feel heavy, and I experience issues with breathing even though my oxygen levels remain stable. - These episodes appear to be aggravated by fatigue, and I find some relief by lying down, applying ice packs, and allowing myself to sleep. Anti-anxiety medications have not been particularly effective; time seems to be the key factor for relief. After episodes, I notice frequent urination and increased thirst for about 12 hours. - During my initial episodes, I sought emergency care only to be referred back to my PCP after drug tests showing negative results. Over time, I developed some resilience to the episodes, learning to calm myself and manage the distress. - I have no recollection of any physical injury before my first episode. It began at home during a day off. - Baseline symptoms involve odd sensations in various body parts, primarily on the left side of my face and arm. I also test as hyper-reflexive. This tightness has markedly increased since my symptoms started. - My water intake has skyrocketed, and my bowel movements have become erratic, oscillating between loose stools and constipation-like symptoms. I’ve historically been regular with my bowel habits, but now it’s often urgent and difficult. - Eating can be a struggle, especially in the mornings, so I’ve developed a routine of starting with milk and coffee before gradually building my meals throughout the day. My nightly rituals often involve light snacks or shakes to ease the next day’s difficulties. - In terms of physical strength, I feel weaker and less capable than I used to be. I’ve lost significant grip strength, and even tasks like carrying laundry or pouring a gallon of milk have become challenging. - Cognitively, I find myself struggling with tasks that once came naturally, like quick mental calculations and understanding jokes. Although I’ve gradually regained ground, I still feel mentally fatigued, particularly when managing time. **Testing and Treatment:** - Baclofen has lessened the frequency and severity of my episodes, offering some relief for the sensory issues. Skipping doses has resulted in diminished episode strength. - Therapy sessions yielded no significant breakthroughs, although they did provide stretches and ergonomic exercises to better accommodate my limitations. - Extensive testing, including multiple MRIs and CT scans, showed no significant abnormalities, aside from some mild degenerative changes and a cervical disc issue that specialists were skeptical would cause symptomatic issues. Bloodwork has yielded mostly normal results, with a few minor abnormalities. Given the persistence of my symptoms, I’m striving to adapt and improve my situation. I’m determined to regain my enjoyment in hobbies and better my work function, especially with my family's finances in mind. I am keen on receiving ideas about potential tests or medication trials I might explore. My follow-up appointment with my PCP is coming up soon, and I hope to have more productive discussions rather than just maintaining the status quo. I appreciate any input or suggestions as I navigate this situation.

Answers (1)

4/2/2025, 6:51:02 PM

OpenHealth AI

Thank you for sharing such a detailed overview of your situation. It’s clear that you’ve been navigating a complex array of symptoms for quite some time and are seeking concrete steps to improve your quality of life. Here’s a structured approach to consider:

Key Points:

1. Your symptoms include sensory disturbances, fatigue, cognitive challenges, and physical weakness, which seem to fluctuate in intensity.
2. You’ve undergone extensive testing without definitive answers, leading to frustration and a desire for further exploration.
3. You’re keen on discussing potential tests or medication adjustments with your PCP during your upcoming appointment.

Explanation:

From your description, it appears you may be experiencing a combination of neurological, muscular, and perhaps psychological factors that are impacting your overall functioning. Conditions like fibromyalgia, chronic fatigue syndrome, and certain neurological disorders can present with similar complex symptoms, though accurate diagnostic criteria and treatment plans vary widely. It’s commendable that you are proactive about your health and looking for ways to enhance your well-being.

Action Steps:

1. Symptom Journal: Continue tracking your symptoms closely, noting the intensity, duration, and potential triggers of both physical and cognitive challenges. This can provide valuable insights for discussions with your PCP.

2. Discuss Differential Diagnoses:

   • During your appointment, mention the possibility of conditions such as fibromyalgia, chronic fatigue syndrome, or even an assessment for autoimmune issues if you haven't explored those paths yet. Discussing these openly can help focus the conversation on broader diagnostic criteria.
   • Consider asking about a referral to a specialist, such as a neurologist or a rheumatologist, who may offer different perspectives or diagnostic approaches.

3. Medication Review: Talk to your PCP about a comprehensive review of your current medications. Inquiring about adjustments or trying new medications that target specific symptoms, such as fatigue or muscle tightness, could be beneficial. Consider mentioning:

   • Gabapentin or Pregabalin for neuropathic pain and sensory disturbances.
   • Low-dose amitriptyline or similar agents for managing insomnia and pain.

4. Physical Rehabilitation: If not already involved, discuss engaging with a physical therapist, particularly one who specializes in chronic pain or neurological conditions. Specific exercises may help improve strength and flexibility without exacerbating symptoms.

5. Nutrition & Hydration: Given the significant changes in your cravings and bowel habits, consider consulting with a registered dietitian. They can provide personalized guidance to help manage both your nutrition and hydration needs effectively.

6. Mental Health Considerations: Since there’s a history of anxiety and cognitive fatigue, discussing therapeutic options, such as cognitive-behavioral therapy (CBT) or mindfulness practices, may help develop strategies for managing stress and cognitive load.

7. Follow-Up on Tests: If new symptoms arise or current ones worsen, don’t hesitate to seek immediate assistance. Be aware of any sudden changes that could signal a new development.

Conclusion:

Your proactive approach to your health challenges is essential, and by coordinating with your PCP about these aspects, you'll be better positioned to work towards improving your quality of life. It’s important to advocate for yourself, and having open, honest discussions during your medical appointments can pave the way for more targeted care. Please keep track of your symptoms and any changes leading up to your appointment; this information will be invaluable for your healthcare team.