Addressing Small Fiber Neuropathy
A 40-year-old female, weighing 80kg, residing in the UK, has never engaged in smoking or drinking habits. After experiencing a near-fatal carnitine deficiency that led to a coma lasting 2.5 weeks, I developed small fiber neuropathy (SFN) affecting both my legs and feet below the knees. This followed eight years of significant dietary restrictions. Upon regaining consciousness, I had to relearn fundamental skills such as walking, eating, and speaking. Two years post-hospitalization, I have received minimal follow-up from neurology, primarily limited to ruling out other potential causes for my condition. Although the doctors indicated the potential for nerve healing at a rate of around 1mm per week, they cautioned that without improvement within two years, the damage might be permanent. I currently experience diminished sensation in both feet, recurrent paronychia on my toes, and ongoing difficulty with mobility. To combat these challenges, I am committed to physical rehabilitation sessions privately three times weekly in an effort to enhance my strength and maintain my ability to walk. Unfortunately, I am now bearing the cost of all treatments privately due to a lack of NHS support. During my hospital stay, I was prescribed gabapentin (100mg in the morning, 100mg in the afternoon, and 300mg at night) alongside Nortriptyline (20mg at night). I continue to take these medications, though I suffer from significant pain at night that disrupts my sleep. My GP is working to manage my pain relief while ensuring I remain alert for work, which presents a continual balancing act. I feel as if neurology has left me to navigate this condition independently. Despite being on a waiting list for a pain clinic for over two years, I have yet to see any progress toward receiving care. The persistent pain affects my daily life continuously, raising the question of whether I should be under regular neurological supervision for monitoring. Alternatively, would it be beneficial to seek a private consultation for a review of my situation? If gabapentin proves ineffective, would trying Pregabalin be worthwhile, and how does its mechanism of action differ from that of gabapentin? I am also considering the use of medical cannabis but would prefer to avoid it as a first option. Thank you for any guidance you can provide, and feel free to ask for further clarification if needed. Edit: Genetic testing ruled out hereditary causes for my carnitine deficiency, confirming it as a secondary issue. My levels normalized and stabilized following six months of continuous supplementation. A doctor had previously suggested regular B12 injections; however, formal testing for intrinsic factor was not possible since my B12 levels were elevated, implying absorption issues. Should I advocate for this testing to potentially benefit my condition?
Answers (1)
2/12/2026, 12:42:13 AM
OpenHealth AI
You are dealing with complex challenges due to small fiber neuropathy (SFN) following your severe medical history. Your ongoing pain, reduced sensation, and difficulties with mobility understandably create significant daily concerns. Let's break down your situation and explore actionable steps to help manage your symptoms effectively.
Key Points:
- Consulting Neurology vs. Private Care
- Management of Pain and Medication Options
- Consideration of Nutritional Factors and Testing
Explanation:
1. Regular Supervision by Neurology or Private Consultation: You expressed concern about the adequacy of your neurological follow-up. While you have experienced limited support, maintaining regular contact with a neurologist could be beneficial for monitoring your SFN progression and pain management strategies. If you feel the current wait time is excessive and your symptoms are significantly impacting your life, seeking a private consultation may expedite your care and lead to a more tailored management plan.
2. Medication Adjustments: Gabapentin and Nortriptyline are common treatments for nerve pain, but if they are not effectively managing your nighttime pain, discussing alternatives with your doctor is essential. Pregabalin is similar to gabapentin but may provide different or more effective symptom relief for some patients. Both medications work by inhibiting neurotransmitter release involved in pain signaling, but Pregabalin is often considered to produce effects more rapidly and consistently. If gabapentin is inadequate, asking your GP about a trial of Pregabalin could be worthwhile.
3. Evaluation for Nutritional Factors: Given the background of your carnitine deficiency, your consideration of a potential B12 deficiency should not be overlooked, especially in light of proposed B12 injections. Advocating for further testing for intrinsic factor—despite elevated levels—can clarify absorption issues and help determine if monthly B12 injections might assist with your healing or nerve health.
Next Steps:
-
Follow Up with Neurologist:
- If you feel comfortable, reach out to your current neurologist to discuss the effectiveness of your pain management and explore the possibility of increased frequency of visits or a referral to a pain clinic.
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Discuss Medication Options:
- Schedule an appointment to specifically review the effectiveness of gabapentin and discuss the potential trial of Pregabalin to help manage your pain better.
-
Nutritional Testing:
- Advocate for intrinsic factor testing and consider a formal discussion with your GP about the potential benefits of B12 injections, particularly if you exhibit symptoms that suggest a deficiency.
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Alternative Pain Management Techniques:
- Alongside medication adjustments, consider discussing complementary approaches such as physical therapy techniques specifically tailored for neuropathic pain management, mindfulness, or relaxation strategies since they can enhance overall pain tolerance and improve quality of life.
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Support Networks:
- Explore support groups or online communities focused on small fiber neuropathy. Sharing experiences with others facing similar challenges can provide emotional support and practical advice.
Thank you for sharing your journey. The symptoms you describe can be overwhelming, but taking these focused steps toward improving pain management and monitoring your neuropathy can create a more sustainable path forward. If you need further details or have specific questions about any of these steps, feel free to ask!
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