Like many people with ME/CFS, I can tell you the exact day that my illness began: March 1, 2002. Multiple studies have indicated that 75-80% of those with ME/CFS have an abrupt onset like that, often triggered by an infection (over a dozen infectious triggers have been identified) or sometimes by a vaccine (in someone genetically predisposed), trauma like a car accident, or even chemotherapy. But are there earlier signs of impending immune dysfunction and illness, even in obviously abrupt onsets like mine that forever divide our lives into Before and After?
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| BEFORE: Hiking up a mountain while carrying our son! |
My Abrupt Onset of ME/CFS:
Before March 1, 2002, I lived a normal, active life. We had two young sons who kept us busy, and in 2000, I had left my career temporarily (or so I thought!) just to slow our lives down a bit and so I could spend more time with our boys. My life at that time without outside work was pretty low-stress, and I was very content. March 1 was a typically busy Saturday: I did an exercise class at the Y while our boys took their swimming classes, we bought groceries and came home to clean the house, and that evening, we had friends over who had 3 kids, and I made dinner and enjoyed their company. By bedtime, though, something felt very wrong. I had a terrible sore throat that I described as "like I swallowed barbed wire." I woke up the next morning badly crashed, in the world of ME/CFS though I wouldn't know that for another year. My life from then on was never "normal" again.
Were There Earlier Signs of Dysfunction?
When we saw our first ME/CFS specialist, the great (now retired) Dr. David Bell, he mentioned to me that most people like me who could point to a specific start date of ME/CFS actually had earlier signs and symptoms. At the time, you don't realize what they signify, but in hindsight, many people can look back and see some patterns that would prophecy ME/CFS, if we knew what to look for. He asked me to think back and consider whether I had any early signs.
When prompted, I realized that I could think of two instances where my immune system was clearly over-reacting, my first encounters with weird reactions to normal things!
In the 9th month of my second pregnancy, in 1997, I got a horrible rash all over my pregnant belly that itched like crazy. My OB/GYN eventually had to give me prednisone ... and it took two rounds of steroids to finally clear it up. She explained to me that it was an autoimmune reaction, my body reacting to the baby as if it were a foreign body it needed to fight and that, while it was not unheard of, it was not a common reaction.
About two years later, in 2000, I got some poison ivy on my forearms while working in our yard. It was isolated to my lower arms and wasn't an especially bad case to begin with, but it wouldn't go away. I spent weeks (very hot summer weeks) soaking my arms in ice baths and covering them with cortisone cream and calamine lotion, to no avail. Finally, once again, two rounds of prednisone were required before the rash subsided.
Later, when I thought about it some more, I also remembered some "weird viruses" I used to get after college, when I was working in my first job, in New Orleans, starting in 1987. About 2-3 times a year, I would suddenly get very sick, but my only symptoms were the most severe sore throat I'd ever felt and complete exhaustion so extreme I couldn't do anything at all. Sound familiar? The first time it happened, I went right to the doctor for a strep test, but it was negative. I stayed in bed and did nothing but sleep and eat for 3-5 days, and then I felt fine again. This happened several times a year and was never accompanied by congestion, cough, fever, or other typical viral symptoms. It often occurred after a very busy period, like back-to-back business trips. I assumed it was some sort of virus, but the exact same pattern repeated over and over.
Just this weekend, I was looking back at an old journal from 2001, just for fun. The first few entries in January were pretty normal, describing our active daily lives with our young sons. But this one made me gasp out loud:
"Fri, Jan. 5 -
Tired, Exhausted. Wiped out. Achy. Struggled to find some energy all day. Had fun in the snow with the boys but now even more tired."
What?? That sounds like ME/CFS, doesn't it? Healthy people don't get flu-like aches without the flu, even if they overdo. I looked back to the day before:
"Thur, Jan. 4 -
Woke up sore and stiff [the previous day was a "normal" one with no unusual activity] and Ken says I was talking in my sleep. I just felt so tired all day - whew. "
Then I wrote this on the following Sunday:
"Sun, Jan. 7 -
I took a step class for the first time yesterday and really overdid it! I had a lot of trouble sleeping last night with lots of bizarre dreams. I felt horrible this morning and ended up spending most of the morning tossing and turning in bed."
Exercise intolerance, anyone?
The following weeks seem fairly normal. I do often write that I'm tired, but I was the mom of two active boys also trying to take care of our house and launch a writing career. But I do remember my husband commenting around that time that it seemed like I was always saying I was tired lately.
In hindsight, it seems like all of this was leading up to that day on March 1, 2002, when a switch was flipped, and my immune system never returned to normal, as it had in the past. I've always thought that the trigger for my ME/CFS was allergy shots (I had just gotten up to my maintenance dose that week), but looking back, it seems like my body was primed for that trigger to finally bring on ME/CFS permanently.
Let me know in the comments below.
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