I felt off when I woke up on Wednesday, January 29th, less than 48 hours after getting 14 prolotherapy injections in my neck.
Not only did the nerves surrounding my head feel more vibrant and constricting than ever, but my arms felt weak and both my shoulders ached, more on the left side than on the right. The top of both of my hands were slightly numb, too, and had an odd tingling sensation.
I started moving my arms around like a monkey and lightly rubbing my hands with my fingers, hoping if I did that long enough it might wake things up and return everything back to normal. But to my great disappointment, the awkward bodily movements did nothing to make my arms feel any less weak or my hands any less numb. It is difficult to describe that experience because it wasn’t something easily pinpointed. I could just tell something wasn’t right in my arms.
That something was off.
Even so I still began to question, as I had been trained to do by all of the doctors that suggested my biggest issue was my anxiety, if what I was experiencing was all in my head. If I was just thinking too hard or worrying too much about it, unknowingly fabricating the experience in my own mind.
But when the pain in my shoulders began to grow and spread down my upper arms, quickly shifting from a mild discomfort into, well, the most excruciating physical pain I’ve ever experienced in my entire life, it became clear that I wasn’t imagining things. And when my neck began to swell and my arms began involuntary twitching soon after this, I felt silly for even questioning myself in the first place.
Little did I know at the time, but the next few months would unquestionably be the most difficult and trying of my life. I thought things had been hard leading up to this day, and the truth is they really had been, but nothing could have prepared me for what I was about to experience in this next chapter of my recovery.
A Dodgy Doctor
Once this started happening my anxiety went through the roof. I had to take Xanax constantly just to keep my body from shaking uncontrollably. I simply couldn’t handle more pain, more setbacks, more uncertainty and more grief after everything I had already been through.
Prolotherapy was supposed to be my cure. This was the treatment that had taken away my debilitating headache in a split second when I first tried it in Vancouver. And now not only was it making my head feel worse than ever, but it was causing new, unfamiliar symptoms in places I had never felt real pain before.
I immediately reached out to the doctor that administered the treatment. Unfortunately for me, Dr. T and his staff could not have been more unhelpful. When I first reached out to Dr. T inquiring about his treatment a week earlier, he had responded to my email in less than 20 minutes. So, of course, I had hoped he would have had an equally timely reply when I wrote him, more frightened and deeply concerned than ever, about what was happening to my body.
But he didn’t, so I called his office and spoke with one of his staff members. They told me that the pain should subside in a few days and in the meantime I should take ibuprofen. “Maybe try ice, but if ice doesn’t work maybe try heat, or whatever you think helps best,” they advised.
Dr. T finally responded three days later after several calls to his office and three emails directly to him, most of which were written in the middle of the night because the pain was so bad it left me unable to sleep. To this day, it’s difficult for me to revisit our email thread because the pain from this period of my life still feels so raw and unresolved, but this is what he said to me:
I would take one Aleve (not Advil, Motrin or ibuprofen) every 12 hours for a total of 4 doses. I can assure you that everything was injected into precisely the right places (due to the use of the ultrasound). Your symptoms should gradually improve if they are indeed a response to the prolo injections.
Keep in mind, however, that it is also possible that your worsening symptoms are NOT due to the injections but rather to a further deterioration of your condition. As I mentioned at our first visit, I have never had anyone been made worse long-term or permanently as a result of prolotherapy or prolozone.
There are several things about this email that were both unhelpful and inaccurate:
1. The Aleve did absolutely nothing for the pain. Neither did Advil, Motrin, ibuprofen, or the intense muscle relaxants prescribed to me by the ER doctors I would later see.
2. The suggestion that what I was experiencing was ‘not due to the injections but rather a further deterioration of your condition’ was both infuriating and demoralizing. Never in my entire life had I experienced pain of that nature in my arms, and I knew he was only trying to deflect blame from his rogue treatment.
3. Considering the havoc these injections have wreaked on my body the last ten months I find his last statement, ‘I have never had anyone been made worse long-term or permanently as a result of prolotherapy or prolozone,’ extremely hard to believe. It was a statement he insisted on repeating to me, as if saying it enough would deflect any suspicions of deceit.
4. The symptoms most definitely did not gradually improve. They worsened.
Another Taste of Short-Lived Relief
Yet, in spite of all of my newfound pain, I wasn’t ready to believe I’d keep getting worse. I still held onto hope that maybe my body would calm down.
So after a week without any improvement, I booked an appointment with my family’s local chiropractor. He said my neck, traps and upper back were a mess, and within two sessions my arm pain was almost entirely gone (my headaches never went away).
I felt an enormous wave of relief when this happened, and even began joking with my family about what a close call this setback was. I laughed with my mom about how needy and clingy I had become while the pain was at its worst. We giggled about it, of course, because it was in the past. It was just a minor bump in the road, I had thought.
This banter was shortlived because on the evening of the fourth day without pain in my arms, I started noticing those odd feelings in my shoulders again. It was a familiar feeling – the same peculiar aching I had felt right after I got the injections over a week ago. It was the same feeling that had made me question whether or not I was making everything up in my head – whether anxiety was the driving factor in all of this anguish.
Except this time I knew what it meant. It meant the pain was returning, and only time would tell how bad it would get.
That night I didn’t sleep at all. I lay awake wrestling with the pain that began in my shoulders, which inevitably worsened and spread down my arms, just as it had the week before.
Then at 2AM something new happened: involuntary twitching. I was caught off guard when my shoulder rapidly jerked forward out of nowhere. Naturally I questioned myself yet again – did I make myself do that? Or did that actually just happen on its own? Pretty soon I was met with the haunting realization that, despite my best efforts, I had absolutely no control over my shoulder sporadically propelling forward, my forearm yanking upwards, or my neck ticking to the side.
I thought I was losing my mind. I wanted it all to be a bad dream, but I knew it couldn’t have been because the pain wouldn’t let me fall asleep.
By 7AM I couldn’t lay awake in bed any longer, so I got up and tried to take a shower. Except once the water hit my skin, I became overwhelmed with nausea and lightheadedness. Something was happening and I needed to get back to bed immediately. I turned off the water, grabbed a towel and walked across the hall to my bedroom. I sat on my bed and grabbed my phone. Somehow I was able to scroll to recent contacts, hit my Mom’s cell phone number and then – blackness.
I came to a few minutes later to the sound of my phone ringing on the floor. I was lying on my bed soaking wet. It took me a few seconds to realize that for the first time in my life, I had fainted. Thankfully, I had fallen backwards onto my bed rather than forward onto the hard, wooden floor.
And so began the period of my life I can only describe as my worst nightmare.