Pain, both acute and chronic, affects most of us with mast cell activation disorders. It can range from bothersome to excruciating and for many, myself included, it can be completely and utterly debilitating. Pain is what left me nearly bedridden just two short years ago, before my diagnosis.
Mast cell degranulation causes pain in every system. It can affect us, literally, from our hair follicles to down deep in our bones.
To complicate things, pain control in mast cell disease patients is difficult because we are so reactive to many of the typical pain relieves used today. NSAIDs, opiods and other analgesics trigger many of us, leaving us with few options.
How exactly does mast cell degranulation cause us so much pain?
In simplistic terms, aberrant mast cell mediator release can activate both local and other remote mast cells, causing a cascade of mast cell activation in our bodies. This can, in turn, create a tsunami of allergic and inflammatory symptoms from head to toe.
Inflammation causes pain.
Dr. Molderings from Bonn University in Bonn, Germany, produced a comprehensive article on this topic, published recently in Pain Physician, to help us (and our doctors) better understand and manage our pain.
In it he explains the complexities and mechanisms of mast cell activation induced pain:
Mast cells and the nervous system influence each other’s responses through bidirectional communication through the release of mediators and cytokines. In the periphery, mast cells are often found in close proximity to nerves and vasculature. Several mast cell mediators such as bradykinin, substance P, TNF α , nerve growth factor, prostaglandins, tryptase, and histamine are released, stimulating receptors that are expressed at sensory afferent nerve terminals, generally resulting in pain perception.When these neurons are stimulated, they send signals to the central nervous system (CNS) and concomitantly release neuromodulators, such as substance P and calcitonin-gene related peptide, the vasoactive intestinal protein, and corticotropin releasing hormone (CRH), which, in turn, can further stimulate mast cell activation creating a bidirectional positive feedback-loop potentially resulting in neurogenic inflammation.Furthermore, mast cells can recruit other immune cells such as eosinophils, neutrophils, macrophages, and T-cells, which release pro-nociceptive mediators and boost the maintenance of inflammatory reactions. As a consequence, inflammation can affect not only injured zones, but also adjacent territories, creating a secondary wide spread hyperalgesia or panalgesia.
He elaborates on the fact that conventional pain relief is challenging (as I mentioned already) and reinforces the fact that pain itself triggers mast cell activation:
Since pain is one of the most effective triggers for the activation of mast cells, its elimination is crucial for the prevention of worsening of patients’ MCAD. Often, treatment of pain in MCAD is challenging, especially because classical analgesics – most narcotics and non-steroidal anti-inflammatory drugs (NSAIDS) – can trigger MCAD and turn out to be ineffective.
It can do us more harm than good to pursue conventional pain relief methods.
So what can we do to treat our pain safely?
Therefore, pain perception in MCAD should be treated specifically, in some cases deduced from their putative mast cell mediator-related causes.
Surprisingly, many of us found substantial pain relief without any drugs at all just by making a few dietary changes:
By avoidance of food containing gluten, cow’s milk proteins, beef, and baker’s yeast, a massive pain reduction can often already be obtained; hence, it should be the first therapeutic action before initiation of drug therapy.
I found when I cut all forms of dairy and yeast out of my own diet (along with a handful of other food triggers) a lot of my gut pain dissipated. In turn, a lot of my other pain was reduced, too.
It was like a miracle! But I have to stay on an extremely restricted diet to maintain this.
Of course it’s easy to get triggered by other, non-food things, and in other places other than my GI tract, so Dr. Molderings created a chart to help us find exactly which pain relief method is most effective for which system (right click and select ‘view image’ so see a larger version):
He also created one to describe the effects of modern pain relieving drugs on mast cell patients:
Finally, he created a chart to guide us on which drugs are most effective in mast cell patients for acute, postoperative endoscopic/surgical pain:
You can find all of these in his must-read article along with the sources related to his findings by clicking here.