Part 3: Needle in your spine, anyone?
June 2022 - August 2022 (Month 6-8)
In June 2022 I finally managed to get into a clinic to see neurologists at the Charité hospital who were studying Long COVID, and specialising in treating neurological symptoms of the illness. It felt like finally, I could get some real diagnostics done to understand my illness and what I could do about it. I entered the hospital for an overnight stay in order to get all the testing done, and waited. There were histories to give, questionnaires, blood given, urine taken, cognitive tests undergone, neurological observations, an MRI scan of my brain and finally a lumbar puncture. Now, this last one came as a surprise to me. I knew they were interested in measuring inflammation and autoimmunity in the body, but I had never heard of Long COVID patients needing or benefitting from a lumbar puncture. But they explained that although it was not mandatory, it would provide a better picture into the underlying situation as many of my symptoms could also be explained by more severe illnesses. “Don’t worry,” they said, “it’s the blood test of neurology, we do these all the time.” Being young and skinny apparently also means that you’re ripe for being used as a learning tool. An apprentice doctor was doing my lumbar puncture, what luck. He was nervous, hand shaking, awaiting instructions from the supervising doctor. I tried to play it as cool as I could though, and we chatted about Canada as most Germans do when they find out where I’m from. In went the needle, “Is this right?” he asks his supervisor. “Yeah but you gotta go deeper and slowly, good, ok.” He hits a nerve in my spine and the shock shot down my left leg and into my foot. I jump in my seat, with the giant needle still in my spine. “No, too far, pull back!” the supervisor corrected. 10 minutes later and they had dripped enough spinal fluid out for all of the tests they needed to run. I was out of the hospital two hours later, with all initial results coming back normal, because of course they won’t find anything.
The first week after the hospital visit I had the expected back pain at the needle site. But my luck being what it is, things just kept getting worse. Over the next couple of weeks I developed severe headaches, back and neck pain, dizziness and general tension my body just didn’t know how to deal with. This wasn’t supposed to happen, but it was possible. So I went back to the hospital one month after the first visit to be checked out for a cerebral spinal fluid (CSF) leak. That’s right, spinal fluid leaking out into the surrounding muscle and tissue — exciting! A CT scan, IV fluids (because, why not?) and two nights in the hospital later, and I was declared free to go. They suspected a CSF leak that had slowly healed but turned into a severe and persistent tension headache with resulting muscle pain. Did I mention that I still have Long COVID?
After my two hospital stays in May and June, I got into another Charité clinic, this time for Physical Medicine (basically physiotherapy doctors). I was feeling pretty beat up at this point in time, extremely stressed and anxious still from whatever my nervous system was doing, but also because I was in constant pain on top of it all. I told my story, again, and being doctors of physical medicine, physical rehabilitation was of course their recommendation. Being highly active before COVID, this was a phase I was very much looking forward to though, so I jumped in with as much energy as I could. I booked my three times a week physiotherapy appointments, and started to work mostly on my back at this point, as I could barely bend over. The first session was mobility work, just trying to get some movement back in my spine and loosen some of the overly tense muscles. It was about 40 minutes long, on and off with various very gentle movements, performed entirely on the floor. It completely destroyed me. For the first time I felt energised right after. Tired, but completely high on adrenaline and whatever else was coursing through my veins. It took me hours to fall asleep that night, wired to the gills from what turned out to be, way too much. The next day I was bed bound. I had crashed and experienced my first real PEM moment. PEM or post-exertional malaise is a hallmark feature of Long COVID, as well as POTS and ME/CFS. There is basically a point at which the more you do and the more you push yourself, the more damage you do. PEM is also called PESE or post-exertional symptom exacerbation, and actually probably fits better what actually happens. The day (or hours) after doing too much, everything feels worse. For me it meant that I couldn’t get out of bed, my whole body ached, I had a sore throat, headache, dizziness, blurry vision, and my heart wouldn’t stop pounding even when lying down. This crash lasted about 3-days for me, with slowly improving symptoms over that course. I went back to physio, told my story, and slowed waaaaay down. I learned the hard lessons of PEM in physio. If during your exercise you experience any worsening of symptoms, you need to stop and reevaluate how much you’re doing and for how long. Finding my PEM boundary was key though, as once I found out how much effort I could handle, I could safely do my mobility work. 6-weeks later, and the same exercises that once floored me for 3-days, took just a few hours to recover from. Progress, sweet, sweet progress.