Seeking Clarity on Unexplained Muscle and Joint Issues
I'm currently 17, but my journey began in November 2023 when I was just 15. Having always been dedicated to athletics—playing football and lacrosse—I embraced a rigorous training regimen that revolved around a healthy lifestyle, featuring a strict diet free from processed foods, regular sleep, daily sauna sessions, and cold plunges. In fact, I was well ahead of many of my peers in terms of discipline and health awareness. However, I suddenly found myself with debilitating bilateral joint pain and stiffness in my knees, shoulders, and elbows, without any prior injuries or trauma. This discomfort steadily diminished my ability to train or lift weights as I once did. Initially, I could at least sense my muscles working through the pain, which, while unpleasant, was bearable. Yet over the last year and a half, things have drastically shifted: - My muscles still appear to activate—as if they are contracting—but I no longer perceive any sensation from them. - It feels like my joints absorb all the strain, making each movement seem reliant on my tendons, fascia, or bones, rather than my muscles, which is exasperating. As an athlete, I used to be incredibly attuned to my body, especially with the mind-muscle connection during resistance training. For instance, during a hamstring curl, I can physically touch my hamstring and feel it contracting, yet I experience no internal sensation of that contraction—no burn, no fatigue, no muscle pump—just escalating joint discomfort with every repetition. This disparity is consistent across muscle groups like my glutes, shoulders, and even calves. In addition, I experience tightness in unconventional areas that don’t seem to be muscular, including: - the side of my upper arm, - beneath my glutes, - behind my knees, - at the top of my quadriceps, - and in my side deltoid. For nearly a year, I explored various rehabilitation paths: I consulted orthopedists, underwent MRIs which yielded normal results, and saw physical therapists, chiropractors, massage therapists, and even tried dry needling and softwave therapy. Despite brief periods of relief, none of these efforts provided sustained improvement. With time, my connection between my mind and muscles only seemed to weaken. Eventually, a physical therapist recommended blood tests, which revealed surprising findings: I was positive for Lyme disease, Epstein-Barr virus (EBV), and a strep-related infection. Come February 2025, I began Supportive Oligonucleotide Therapy (SOT) for Lyme. Alongside this treatment, I incorporated: - NAD+ intravenous therapies, - daily sauna and cold plunge sessions, - a meticulously clean, anti-inflammatory diet (avoiding processed foods, focusing primarily on fish, eggs, greens, and citrus), - and lymphatic work for nervous system support. Interestingly, although I’ve noticed systemic improvements with enhanced energy and reduced brain fog, this neuromuscular dysfunction remains unchanged. I've effectively ruled out: - major structural injuries (with MRIs showing normal results), - autoimmune issues (with all tests returning negative), - fluoroquinolone damage, - and any lifestyle concerns (I've always adhered strictly to my diet, sleep, and exercise routines). Yet, I’m still unable to: - feel my muscles contract, - handle repetitive movements without intense joint pain, - perform basic movements without my body resorting to ineffective patterns. Neurologists appear perplexed, physical therapists prescribe basic exercises that only exacerbate my joint pain, and even Lyme specialists are bewildered by this disconnect between muscle activation and sensation. What could be the underlying issue? - Is it neuro Lyme or some central nervous system involvement? - Could it be a functional neurological disorder (FND)? - Is small fiber neuropathy due to chronic inflammation at play? - Could there be nerve entrapments due to fascial restrictions? - Or perhaps an undiagnosed neuroimmune disorder? I’m not looking for sympathy—what I seek is guidance. If anyone has faced a similar struggle or knows of specialists or treatments that address this type of neuromuscular disconnect, I'm eager to hear from you. I am committed to finding a solution—I just need direction to pursue. Thank you for your time.
Answers (1)
6/24/2025, 9:31:07 PM
OpenHealth AI
It sounds like you’ve been through a challenging and complex journey with your health, especially given your dedication as an athlete. Your symptoms of debilitating joint pain and the disconnect between muscle activation and sensation are concerning and warrant careful exploration. Let's break this down and look at potential underlying issues and next steps.
Main Points
- Possible Causes: Your symptoms could suggest several underlying factors like neuro-Lyme disease, functional neurological disorders (FND), or small fiber neuropathy due to chronic inflammation.
- Current Treatments: Despite various therapies, it seems that your neuromuscular function remains impaired.
- Next Steps: Consider more specific assessments and a multidisciplinary approach to understand your condition better.
Explanation
Your description indicates that despite a rigorous regime and seeking numerous treatments, you continue to experience significant neuromuscular dysfunction. Your blood tests for Lyme, EBV, and a strep-related infection guide part of your treatment. Given the normal MRI results and negative autoimmune tests, it's crucial to focus on how these infections might impact your nervous system and overall neuromuscular function.
Prioritized Next Steps
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Neurological Evaluation: Ensure you have a thorough assessment from a neurologist with expertise in infectious diseases. They may consider tests that assess nerve conduction or small fiber function that are not always routine.
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Specialized Pain Management: Consult with a pain specialist or a rheumatologist who can explore potential central sensitization or other pain modulation issues that might be contributing to the intensity of your joint pain.
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Functional Neurology Consultation: Look for a functional neurologist who specializes in conditions like FND or those related to previous infections. They might explore rehabilitation techniques specific to re-establishing the mind-muscle connection in a way that considers your unique situation.
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Nutritional Support: Continue your anti-inflammatory diet, but consider consulting with a nutritionist familiar with post-infectious syndromes to optimize your dietary strategies for neurological health.
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Physical Therapy Re-Evaluation: Seek out a physical therapist focused on neuromuscular re-education or one who works specifically with athletes. They might offer a fresh perspective on tailored exercises focusing on neuromuscular coordination without exacerbating pain.
Additional Tips
- Keep a Symptom Diary: Documenting your pain levels, activity types, and any new symptoms may provide valuable insights for your healthcare team.
- Engage in Low-Impact Activities: While you're managing your pain, gentle movements like swimming or yoga may help keep your body engaged without the stress of high-impact training.
Remember to stay persistent and open-minded as you pursue further evaluations and therapies. Collaborative care and a focus on your evolving needs will be key in finding strategies that work for you. If you have further questions or need clarification on any of these points, feel free to ask!
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