OpenHealth Q&A

Experiencing Leg Sensitivity and Tension - Seeking Similar Stories

Hello everyone, I find myself in a troubling situation that’s leaving me feeling quite hopeless. Despite numerous visits to doctors, I still don’t have a diagnosis, yet I endure constant suffering. Has anyone else gone through anything like this? My troubles began roughly two and a half years ago, starting with a peculiar numbness in the last three toes of my right foot. Gradually, this sensation escalated, transforming into significant tightness throughout my entire lower leg. Initially, I likened it to the onset of cramping, although it never fully developed into one. This phase lasted about three weeks, during which I was prescribed medications, including Ketoprofen and Sirdalud, which ultimately brought some relief. For quite some time after that, I would experience episodes of tension and unusual sensitivity that would typically last about a week. The only consistent treatment during this period was a daily dose of Amitriptyline, 10 mg. However, earlier this year, things took a drastic turn for the worse. I began to notice the sensitivity in my leg once more, which was manageable at first. Then, one day at work, everything changed abruptly. I felt as if my body had shut down completely; there was an overwhelming tension, making it impossible for me to sit, stand, or walk comfortably for several hours. Eventually, the tension subsided, allowing me to return home, but it lingered throughout the evening. The following day, while the overall tension eased, the tightness in my right leg remained prominent, particularly below the knee. I resumed taking Sirdalud on a regular basis. Falling asleep has become a challenge as well; finding a comfortable position to ease my legs feels nearly impossible. Yet, after finally drifting off, nighttime seems to provide a welcome relief for my body. Some additional symptoms I’ve been experiencing: - My foot occasionally has a peculiar sensitivity, leading to strange sensations upon contact. - I also feel a pulsating sensation on the inside of my foot that lasts for about an hour. - There are sporadic muscle twitches occurring in various areas of the foot, sometimes near the big toe or the inner side. - I’ve noticed that my leg muscles are weak and tire easily. This episode persisted for around a month before it lessened, allowing me to work for three weeks before I went on vacation. Unfortunately, during my trip, the symptoms returned and have now plagued me for six weeks. Additionally, this time, I am also experiencing issues in my left leg. Walking has become increasingly difficult; even minor activity leaves my legs feeling utterly fatigued. I’ve also noticed a slight fever during both recovery phases. Interestingly, I've observed that my emotions and room temperature (whether too hot or too cold) seem to affect my symptoms. Moreover, I frequently experience numbness in my hands, though I can’t determine if it’s linked to my leg problems. That sums up everything regarding my symptoms. I’d greatly appreciate any insights or similar experiences you might wish to share! Regarding my medical evaluations: - I’ve undergone five MRIs, revealing syringomyelia that has remained unchanged over time. A notable finding was a cyst-like area on the central spinal cord at levels Th7 to Th10, measuring up to 3 mm in the anteroposterior direction and 4 mm laterally; however, no other useful information was provided. - I’ve had three EMGs/ENMGs with consistent results showing no neuropathy, although there’s some suggestion of underlying myopathy. The nerve evaluations consistently appeared normal. - All tests for motor and sensory nerves in my legs were normal. Muscle tests showed shortened duration potentials indicative of slight muscle damage. Notably, no dystonic postures were observed, and voluntary movement ceased rapidly after inducing provocative maneuvers. - A recent muscle biopsy returned normal, revealing no myopathic changes. Some COX-negative muscle fibers were present but at a very low percentage. - Advanced imaging showed no signs of tick-borne encephalitis. Additionally, my ANA IgG test returned positive at a titer of 1:100. - For the last several years, my CRP levels have been elevated, consistently ranging between 15-30, while the normal range is up to 5. I also have had elevated uric acid levels for years. - For about 15 years, I managed autoimmune thyroiditis, recently progressing to hypothyroidism, which is currently under control with treatment. - CT imaging revealed enlargement in my liver and spleen, though a PET/CT ruled out any tumors. The metabolic activity in these organs was initially high but appears normal now. - Genetic testing is also underway with results anticipated this autumn. Despite extensive testing, I remain without a diagnosis, and my despair is growing as these sensations are incredibly distressing. Without a diagnosis, there is no specific treatment available. At present, my Amitriptyline has been replaced with Nortriptyline, and I remain uncertain about its efficacy. I share my story in hopes of connecting with others who might be facing similar challenges. How have your doctors approached your cases? What diagnoses have they considered? Any treatments that brought you relief? My life feels consumed by this issue, and I’ve been struggling with dark thoughts. Thank you for reading! 🫶

Answers (1)

7/29/2025, 1:41:08 PM

OpenHealth AI

I'm truly sorry to hear about the challenges you're facing with your leg sensitivity and tension. It sounds incredibly frustrating and exhausting to deal with persistent symptoms without a clear diagnosis. While I can't provide a specific diagnosis, I can offer some insights and suggestions that may help you manage your symptoms and improve your quality of life.

Summary of Key Points:

1. You are experiencing persistent leg sensitivity and tension, along with a range of associated symptoms.
2. Despite multiple evaluations, a definitive diagnosis remains elusive.
3. Current treatments are not providing adequate relief, which contributes to feelings of despair.

Explanation:

Your symptoms, including the tightness and unusual sensations in your legs, could stem from various factors, including possible neurological components associated with your syringomyelia, autoimmune issues related to your thyroid, or inflammatory processes indicated by your elevated CRP levels. The complexity of your symptoms reflects a condition that may not fit neatly into one diagnosis, making it challenging to find effective treatment.

Next Steps:

1. Symptom Tracking: Continue to keep a detailed diary of your symptoms. Note when they worsen or improve, alongside any potential triggers like stress levels, environmental changes, or physical activity. This information can assist your healthcare providers in identifying patterns that relate to these symptoms.

2. Lifestyle Modifications:

   • Regular Movement: Gentle stretching or low-impact exercises (like swimming or walking) might help alleviate some tension and improve circulation. Aim for daily movement without overexerting yourself.
   • Heat Therapy: Applying warm compresses or using a heating pad can ease muscle tightness and promote relaxation.

3. Mind-Body Approaches: Techniques like mindfulness, yoga, or meditation may help manage stress and enhance your emotional well-being in conjunction with your physical symptoms. The impact of emotions and temperature on your symptoms suggests that your nervous system may be reactive to stressors.

4. Dietary Considerations:

   • Incorporate anti-inflammatory foods, such as fruits, vegetables, whole grains, and omega-3 fatty acids (found in fish and flaxseeds), into your diet to potentially reduce overall inflammation.
   • Staying hydrated is vital, so ensure you are drinking enough water throughout the day.

5. Regular Follow-Up: Continue communicating with your healthcare team about the persistence of your symptoms and any new developments. If needed, ask about exploring other specialists, such as a neurologist or rheumatologist, who could provide additional perspectives given your complex medical history.

6. Support and Connection: Consider joining support groups for individuals with similar experiences, whether they’re related to chronic pain, autoimmune conditions, or neurologic issues. Connecting with others may provide comfort and sharing of tips that have worked for them.

It’s understandable to feel overwhelmed by your situation, but taking small, manageable steps can make a difference over time. Remember, you deserve support and care as you navigate these challenges. If you ever feel that your thoughts become too much to handle, don’t hesitate to reach out to professional mental health resources. You’re not alone in this.