OpenHealth Q&A

Searching for Answers: A Journey with Walking Difficulties

As a 23-year-old woman, standing at 5'4" and weighing 127 pounds, I have faced significant challenges with walking for the past three years. My range is limited to about a block before I begin to stumble, making leg movement increasingly difficult. While I don’t experience pain, it feels akin to moving through water. My gait is rigid, and bending my knees presents a struggle. I’ve observed that my thigh muscles remain perpetually tense, which I suspect might be a crucial factor in my condition. During the initial half hour of my day, my walking appears relatively normal. However, as I engage in more movement, my situation deteriorates. Several triggers aggravate my symptoms: stress, prolonged standing or walking, heat, specific foods (which are hard to identify, but meals often exacerbate the issue), low blood sugar, and exposure to UV rays. Any form of exercise beyond walking significantly impacts me; for instance, I tried cycling for just ten minutes and found myself struggling to walk for the whole week. Ironically, I do not experience actual pain through this ordeal. Additionally, stretching tends to worsen my mobility. Fortunately, I have found relief through certain medications—curiously, lorazepam and lidocaine have both improved my ability to walk without that 'water' sensation and helped with knee movement. Other strategies that assist include resting, ensuring optimal levels of B12 and iron, eating when my blood sugar dips, and limiting UV exposure. I maintain a clean lifestyle: I don’t smoke, drink alcohol, or use illicit drugs. I’m on birth control (Vyfemla) and take famotidine at night for gastroesophageal reflux disease (GERD). Some pertinent aspects of my medical background include spinal fusion surgery at age 15, which left me with kyphosis, and a celiac disease diagnosis that led to gluten ataxia prior to adopting a gluten-free diet. I had been severely deficient in B12 and iron when diagnosed with celiac disease but have since successfully addressed those deficiencies. I wonder if celiac or the B12 deficiency have caused lasting damage, although the fluctuation in my ability to walk normally gives me pause about that theory. I have been tested for multiple sclerosis and myasthenia gravis, both of which have returned negative results. My neurological examinations consistently yield normal findings. An EMG/NCS showed mostly normal results as well, though there’s a possibility of a pinched nerve in my back, and I’m currently undergoing a series of spinal MRIs for further insights. My neurologist conducted blood tests for lupus and various forms of myositis; while the tests for myositis were unremarkable, my lupus screening showed a positive result (elevated anti-ds DNA levels), prompting a forthcoming consultation with a rheumatologist. I suspect that I might have mast cell activation syndrome (MCAS), as I experience allergic reactions to nearly all foods, and I am planning to address this with a healthcare professional. My main concern is whether MCAS could be influencing my walking difficulties, particularly given how significantly my symptoms seem to correlate with food intake. Could either lupus or MCAS be behind the challenges I face with walking? Has anyone experienced anything similar? I would greatly appreciate any insights you might have!

Answers (1)

7/12/2025, 11:01:25 PM

OpenHealth AI

Your experiences with walking difficulties and the complex interplay of symptoms must be incredibly challenging and frustrating. It's great that you've taken proactive steps to address your health issues, and understanding potential connections between your symptoms, like lupus and mast cell activation syndrome (MCAS), is important as you seek clarity.

Main Points

1. Walking Difficulties: Your symptoms suggest possible neurological or muscular origins, given the rigidity and fatigue after minimal activity.
2. Potential Links: Conditions like lupus and MCAS could contribute to your symptoms as they may affect muscle function and overall physiological responses.

Explanation

Walking difficulties, especially those not accompanied by pain, can arise from several factors including neurological issues, autoimmune conditions like lupus, or systemic reactions due to mast cell activation. Since your neurological tests have largely returned normal, ongoing evaluation of lupus and potential mast cell disorders is crucial.

Lupus can cause muscle weakness and fatigue, while MCAS may lead to various systemic symptoms, including muscle tension or neurological affectation, especially when combined with dietary triggers. Your observation that food seems to aggravate your symptoms aligns with mast cell disorders, which can trigger significant inflammatory responses.

Next Steps

1. Continue with Specialist Consultations:

   • Follow up with your rheumatologist about the positive lupus screening to determine how it may be contributing to your symptoms.
   • Discuss your suspicion of MCAS and consider potential testing or treatments if you haven't already.

2. Monitor Symptoms Closely:

   • Keep a detailed diary of your symptoms, including food intake, activities, and any triggers, to identify patterns that may help clarify your condition's origin.
   • Note fluctuations in your walking ability, energy levels, and how they relate to dietary changes or stress.

3. Manage Stress and Triggers:

   • Since stress exacerbates your symptoms, consider practices such as mindfulness, yoga, or other relaxation techniques. Finding ways to minimize exposure to triggers (heat, UV rays) could also be beneficial.

4. Physical Therapy:

   • If feasible, seek physical therapy tailored to improving walking mechanics and mobility. A professional can help develop a safe exercise program that considers your limitations and targets your specific needs.

5. Nutritional Considerations:

   • Work with a dietitian familiar with celiac disease and MCAS to identify and mitigate food triggers. Ensuring a stable diet that maintains blood sugar levels may help in managing symptoms.

Feel free to reach out if you have more questions or need further information about implementing any of these steps. Your proactive approach to understanding your health is commendable, and I hope you find the answers you seek.