Now I am not downplaying “normal” people’s suffering, I promise. It’s just that when you have MCAS, back pain takes on a whole different dimension of suffering.
In fact, research has shown that mast cells may contribute directly to some of the worst back pain there is:
An immune system substance may contribute to causing the low back pain associated with herniated and degenerated discs, according to a new study.
“We have identified an immune substance that could start the inflammatory process for disc herniation and disc degeneration,” says researcher William J. Richardson, MD, professor of orthopaedic surgery at Duke University Medical Center in Durham, N.C.
The substance, interleukin-17 or IL-17, was found in more than 70% of surgical tissue samples taken from patients with degenerated or herniated disc disease, but rarely in healthy disc tissue samples, the researchers found.
The proinflammatory cytokine IL-17 has an important role in pathogenesis of several inflammatory diseases. In immune-mediated joint diseases, IL-17 can induce secretion of other proinflammatory cytokines such as IL-1, IL-6 and TNF, as well as matrix metalloproteinase enzymes, leading to inflammation, cartilage breakdown, osteoclastogenesis and bone erosion. In animal models of inflammatory arthritis, mice deficient in IL-17 are less susceptible to development of disease. The list of IL-17-secreting cells is rapidly growing, and mast cells have been suggested to be a dominant source of IL-17 in inflammatory joint disease.
Right before my diagnosis my back pain was so intense it was hard to stand up straight! It wasn’t what kept me bedridden most of the time though; that was the hip pain, dizziness/fainting and the chronic fatigue. It did make life most miserable. It started from my jaw and wrapped around into my neck, shoulders and all the way down to my lower back and beyond. It was as if I was in the grip of an invisible monster squeezing the life out of every muscle.
My shoulders were locked up super tight. It was hard, if not impossible, to lift my arms straight out or above my head. My jaw was literally locking shut and I was having to force it open manually just to eat. It’s pretty incredible thinking back on it all now because it’s been so long since it was that bad. I was really, really sick for a while there!
Last week it wasn’t that bad but it was still pretty debilitating. The pain was centered right between my shoulder blades and left me seized up with my arms and hands totally numb. I could only spend a few moments at a time on the laptop or computer and forget holding my cellphone. It was excruciating.
I spent most of the time laying flat on my back, hands flat to my sides, wishing I had something besides compounded Tylenol and contrast bath therapy to deal with it. I did take a Xanax finally and got some much needed sleep, which helped kill time while I waited it out.
The difference, I guess, between us and “normal” people suffering from these sorts of things is that for one, our inflammation doesn’t just stay in one area. Something like pulling a muscle then triggers a full body degranulation event and our mast cells turn on like little fountains from head to toe.
It’s called the “MCAS cascade” or inflammatory cascade:
Allergen-induced mast cell degranulation initiates the inflammatory cascade. Histamine and other mast cell-derived mediators (CysLTs, etc.) cause early phase symptoms within seconds.
So while I was struggling with the back pain, I was also sneezing and coughing which made it so much worse. It doesn’t help that I can’t take NSAIDs or opiods or even muscle relaxers. I am so limited in what I can use when I am in that sort of pain so I have to do my best to muddle through and try not to get it started to begin with.
Still, I bounced back and have a lot more energy now. More than before, even! Not just for regular, everyday stuff, either. I’m on top of everything again around the empty nest and I am even back to sanding and prepping for painting the entry way and kitchen.
I haven’t felt this good in a very long time. Which is weird because one, I am on my period and two, I (temporarily) quit taking the Ketotifen a few days ago for reasons I’ll get into in a future post.
So it doesn’t really make sense that I’m doing so well right now but since the stars are aligned I am just going to make the most of it and try not to push myself back into the miserable land of MCAS-induced back pain in the process.
No one wants to be there. Right?