Hello again! I’m back again with part three of my ongoing series of posts all about Dr. Lawrence Afrin’s incredibly informative book, Never Bet Against Occam. I’m barely into chapter six now and the title alone had me laughing and nodding my head in agreement:
Chapter 6: The Constitutional Symptoms of MCAS, or, “I Feel Like Crap And I Can’t Put It Any More Specifically Than That”!
Ahahaha! Oh yes, that definitely fits me and probably does, you, too, if you have MCAS. In fact, I can’t remember how many times I said something along the lines of, “I don’t know, I just don’t feel good!” when asked for the millionth time, “what’s wrong?”. It is just so hard to describe what it feels like to be sick with mast cell disease. I did recently come up with an analogy of it being like having a really bad head cold and stomach flu all at once, along with rolling in poison ivy now and then, but even that doesn’t quite describe it because it’s so complex and almost indescribable.
Thankfully Dr. Afrin knows all about this and he really gets it. I love this guy!!
He goes on to explain that we all seem to have symptoms that are all over the place and many of us suffer from low body temperature and feeling cold all the time while at the same time feeling like we are running low grade fevers.
I know I personally always ran about 96.8 (rather than 98.6) degrees before I was medicated and I felt super cold all the time (another thing we seem to have in common – brr!). I was freezing even when I felt “normal” and yet, ironically, I did feel like I was running fevers a lot, too. Usually when I checked, I was at 98.5 or even 99 on the thermometer which to me was a low-grade fever since my normal was so low, but I rarely ever ran above 100. In fact, I can’t remember the last time I ran a fever of over 100 and the same goes for my son with MCAS.
He also talks more in chapter six about fatigue and malaise and how it can be so disabling it can render us unable to function:
Fatigue and malaise — to varying degrees at varying times on varying days but which in some patients can sometimes be utterly disabling (to the point of being literally unable to get out of bed) — is one of the most common symptoms of MCAS.
It definitely hits us both hard still, even after being medicated and finding complete symptom relief for days at a time. That fatigue always seems to creep back in no matter what we do.
He talks about how it can be hard to get disability or assistance because on the outside we look “normal”.
The fatigue and malaise can be so disabling so often as to render a person unemployable. Yet, the path to financial assistance for such is difficult for many reasons, not the least of which is because, again, externally they often appear “OK.” Many patients have found that keeping detailed diaries of their symptoms and disabilities, together with engagement of a lawyer specializing in disability, to be helpful in their process of applying for assistance.
He then describes unprovoked sweats, mostly at night, which I suffer(ed) from as well, and also a decrease in appetite (sometimes to the point of anorexia) which I also have struggled with personally. He tells of patients who have puzzling weight fluctuations and gives real life examples of people gaining incredible amounts of weight without changing anything at all (I’ve never experienced that except when I gain a few pounds of fluid retention/swelling weight during a flare).
My appetite is awful and I still have to force myself to eat but I’m finally at a healthy weight for the first time in my life and so is my son who, like me, was also always underweight (even though he has always had a healthy appetite!).
Finally, he ends chapter six by talking about the itching we all seem to suffer from and how it can sometimes be exacerbated by water, particularly hot water.
Another constitutional issue that’s common in MCAS is itching (“pruritus”), and it usually afflicts different parts of the body from one episode to another, although sometimes the itch is maddeningly persistent in one particular area of the body in which there is absolutely no abnormality apparent on physical examination or imaging of any type, or even on biopsy. Sometimes the pruritus is “aquagenic”, meaning it is triggered by exposure to water, and when that happens, it’s far more often hot than cold water that sets it off.
I know from my own experience that my itching used to be mainly on my lower legs and did get worse in a hot shower or bath. A few years ago the itching all over definitely got noticeably worse. So did many of my other symptoms and back in chapter five he even talks about that phenomenon, too.
He described how many of us can pin point a stressful event or time period in our lives when our symptoms really ramped up and our health really took a dive. For me (and my son) it was after I opened an in-home daycare and used bleach regularly. I had to close it down in less than three years and I have no doubt it was the catalyst for me to become really, really sick really, really fast.
Just over a year ago I was using a cane off and on and was nearly bedridden with intense, almost constant pain in my hip, ribs and abdomen as well as the disabling fatigue which I am still battling to this day. Not to mention the other fifty-plus symptoms I was struggling with almost continuously which I had chalked up to a suspected food allergy!!
Thankfully I don’t have to struggle with all of those “food allergy flare” symptoms, as I called them back then, anymore, though. Thankfully I found the right doctor and he recognized that what I really have is MCAS (although food “allergies” are a huge part of it). I still want to hug him for finally finding the answer for me! Having a diagnosis and a treatment plan with lots of options has given me a chance at a somewhat “normal” life.
I used to shun doctors and medicines and now I embrace them because I finally found the right ones!
In fact, I am going to be adding quercetin back to my daily medicine list now that I’ve given the Doxepin time to really start working. I do definitely feel better on the Doxepin — my mood is up, the apathy is gone and overall I definitely feel happier — but I want the extra brain energy and mood boost the quercetin gave me when I first tried it before. Hopefully it’s the last piece of my medicinal puzzle!
Of course I’ll update here in a few weeks with the results.
I’ll also be continuing this series as I work my way through more of Dr. Afrin’s book, Never Bet Against Occam. If you haven’t gotten a copy yet you definitely want to get one because it is packed with more information than I expected and all of it is useful to those of us trying to understand mast cell disease. I really enjoy his writing style and feel like he does a wonderful job of putting it all together, too, which is a pleasant bonus.
If you or a loved one has or suspects MCAS I can’t recommend this book enough!! So make sure to join me next time.
Please take a moment to share this post on social media, won’t you? The purpose of this blog is to bring awareness to mast cell disease and I can’t do it alone. I rely on dear readers like you to help get the word out so we can reach as many people as possible. Thank you so much and Happy New Year!!
xo Michelle Dellene