This post delves into the common symptom of neuropathy in people with MCAS: what it is and how to deal with it.
Table of Contents
How common is neuropathy in people with MCAS?
Neuropathy appears to be fairly common in people with Mast Cell Activation Syndrome (MCAS), though exact prevalence rates are not well-documented in large studies. However, many individuals with MCAS report nerve pain, numbness, tingling, and burning sensations, which suggest mast cell-driven neuropathy.
Why does neuropathy occur in people with MCAS?
There are several ways that neuropathy can show up in people with MCAS:
1. Mast cell-mediated nerve inflammation
Mast cells release histamine, tryptase, and other inflammatory mediators that can damage or irritate nerves, leading to pain and dysfunction.
2. Small fiber neuropathy (SFN)
- Many MCAS patients experience Small Fiber Neuropathy (SFN), which affects tiny nerve fibers responsible for sensation and autonomic function.
- Symptoms: Burning pain, tingling, numbness, temperature sensitivity, and autonomic dysfunction (e.g., heart rate issues, gut motility problems).
3. Histamine and nerve hyperexcitability
Histamine can cause excessive nerve firing, contributing to pain, itching, and hypersensitivity to stimuli (e.g., touch, heat, cold).
4. The connection between dysautonomia and neuropathy
- Many people with MCAS also have Postural Orthostatic Tachycardia Syndrome (POTS), which is linked to autonomic nerve dysfunction.
- Neuropathy may play a role in blood pressure instability, temperature regulation issues, and digestive problems.
5. Vitamin and nutrient deficiencies
MCAS can contribute to gut malabsorption, leading to B12, magnesium, or other deficiencies that can worsen nerve function.
How to manage neuropathy in MCAS
✔ Mast Cell Stabilizers – Quercetin, luteolin, ketotifen, cromolyn sodium
✔ Low-Histamine Diet – Reducing histamine triggers can help reduce nerve inflammation
✔ Supplements – B12, magnesium, alpha-lipoic acid, IP6, and palmitoylethanolamide (PEA) may help
✔ Medications – Low-dose naltrexone (LDN), methylene blue, antihistamines, or mast cell-targeting treatments
✔ Lifestyle Adjustments – Gentle movement (yoga, walking), avoiding triggers, having a supportive routine, and supporting nervous system regulation
What is MCAS?
Mast Cell Activation Syndrome (MCAS) is a chronic condition that affects all organ systems. It can cause severe, disabling symptoms every day, including potentially fatal anaphylaxis. MCAS often occurs with other chronic conditions like Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Managing MCAS is challenging because many healthcare providers are unaware of it, and diagnostic tests can be unreliable. Treatments involve using antihistamines, mast cell stabilizers, and avoiding triggers. Check out this post on how to manage MCAS.
The bucket theory
The bucket theory simplifies understanding symptom reactions with MCAS. Imagine your body as an empty bucket you don’t want to overflow. Reactions to various stimuli fill the histamine bucket at different rates, forming the total histamine level (how full your bucket is). More histamine means more symptoms. By managing triggers, reducing exposures, and taking medications and supplements, you can control your bucket’s level.
Know your typical symptom progression
Knowing your symptom progression in a symptom flare is the key to developing your rescue plan. This post discusses how to recognize your symptom progression so you can be prepared to address those symptoms.
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The Safe and Sound Protocol (SSP) is a listening therapy based on Polyvagal Theory that helps heal nervous system regulation. Many people with MCAS have nervous system dysregulation stemming from infections, toxic exposures, concussions, and trauma. The SSP is an easy-to-use app where you listen to specially filtered music for 30 minutes each day for a 5-hour cycle. Studies show the SSP has a profound effect on mental health and chronic conditions
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Disclaimer
The preceding material does not constitute medical advice. This information is for information purposes only and is not intended to be a substitute for professional medical advice, diagnosis, cure or treatment. Always seek advice from your medical doctor.
