ID: The words New Blog Post in the upper right hand corner. Beside is the title, The Great Mystery. Beneath the title are the questions “Who? What? Where?” In the center is a silhouette of a detective wearing a deerstalker hat (popularized by Sherlock Holmes), holding a magnifying glass, and smoking a pipe. Below are the responses, “-shoulder subluxation, -holding the lead pipe, -in the conservatory.”
I still remember the Christmas that I was given the board game Clue. I played it as often as I could, loving the opportunity to solve a mystery. For a kids game it’s got complexity. You’re not just searching for a murderer. You must solve who, what, and where? Living with a rare, chronic, incurable illness can be a bit like playing Clue. My body is constantly giving me lots of information. It’s my job to figure out how to interpret that information in the hope that I’ll be able to figure out what happened, and maybe even help myself. Some of that information is valuable, some is unimportant and making that distinction can be hard. Being chronically ill is hard enough, trying to “solve” every flare is expecting the impossible from myself.
For more than 5 years I have been getting saline infusions to manage my Dysautonomia. Originally they were once a week, but they increased to twice weekly during a flare. A couple of times, I tried adjusting back to once a week. Unfortunately it brought on headaches, brain fog, GI pain, and nausea. The last time I tried switching to once a week, I ended up with an increase in symptoms that more infusions didn’t fully help. I decided to seek out additional treatments that might support me, landing on acupuncture.
Many years ago, I tried acupuncture and it was successful at helping my nausea. It seemed like a good option to try again, and it was easy to find a local provider. At my first appointment they used moxibustion, the burning of dried mugwort near acupuncture points. At my second appointment they used ear seeds, or tiny acupuncture devices that stimulate points in the ear and stay on your body for a prolonged period. I was told to leave mine on for five days, although I’ve been told that is a bit long. I took them out on Sunday.
On Monday, my caregiver told me that the right side of my face was swollen. I have struggled with TMJ issues and jaw subluxations since my childhood, but my face has never swollen up before. I decided to start by putting my night guard in. Immediately I could tell that something was off in my jaw. Wearing the appliance hurt and I could feel my jaw shifting. I chalked it up to misalignment. But was it related to the ear seeds? Could it be due to something I ate, or how I slept?
On Wednesday, I had a dental appointment. They were able to rule out a tooth infection but I was told they could not repair my cavity with facial swelling so severe. By this point my ear was hurting, so I thought it could be an ear infection. I was able to see a doctor, and ruled out an ear infection. They felt a difference between the two sides of my jaw but weren’t able to confirm a subluxation.
On Thursday, I saw an occupational therapist who specializes in hand to shoulder issues. We’ve worked together for many years. She immediately noticed swelling above my shoulder, near my neck, and below the right scapula. She told me I was positive for tear signs in my shoulder but explained that could be due to my hypermobility, not necessarily a tear. She was confused by my areas of swelling and couldn’t define what muscle, tendon, or ligament was affected. She did note that it was the most pain she had ever seen me in. Was my jaw affecting my neck and shoulder; or my neck and shoulder affecting the jaw? Could this be related to a newer medication that can cause muscle spasms?
Already I was overwhelmed by the information. I was able to rule out infection but not able to rule in or out subluxations. Wee the ear seeds a catalyst or a coincidence? This also meant I didn’t know what to do to support myself, so I tried everything. I used topical creams, heat/ice, epsom salt baths, an acupressure mat, and even a muscle relaxant to try to manage my symptoms. I was no closer to understanding what had happened and my face was still swollen five days later.
The following Wednesday, I saw my physical therapist. My jaw swelling had reduced but my shoulder and back were still swollen. She explained that my shoulder hanging so low could have pulled my jaw out. She massaged and tried to realign me. She also showed me a test to see if my shoulder was caught in the socket and not moving smoothly. The following morning I was up at 5:30, with my heart racing. Was it pain? Was this due to the PT session? Sometimes my body takes a while to adjust to body work. That morning I saw my Doctor of Osteopathy. She said I was wound really tight and also tried to help my body adjust to better alignment.
The following morning I was up at 4:30 with a blood pressure of 135/100 by 6AM. The morning was difficult but I made it through my infusion. Was my blood pressure high because I was in desperate need of my infusion, or was I still adjusting to the body work? Saturday morning, my period finally started. I spent the week resting through increased symptoms and cramping. By Friday my menstrual cycle had ended but my nausea was increasing. I ended up throwing up twice that morning. Was this due to pain? Or increased blood pressure? Was this a stress reaction to the increased pain and instability?
Figuring out a solution is often thought of as the way toward healing. Is eating a specific food making you sick? You have to figure out which one to know what to eliminate so that you can reduce your symptoms. At this point I have been dealing with an onslaught of increased and/or new symptoms for over 3 weeks. I’m remembering to use ice and heat, rest, medication adjustments and careful exercise to try to support myself and move towards healing. But I’m tired. I’m tired of trying to solve a mystery that may be over long before I’m able to solve it. I’m expending so much energy trying to get to the root of this flare, while managing the actual symptoms of the flare. Is it pain? Is it my jaw? Is it my shoulder? Which provider should I reach out to? How should I modify my day? How long will this last? Should I be adjusting a medication? Is this causing more damage to my nervous system? Will it shift again? How should I manage the compounding stress and anxiety? What should I be doing to help myself now? What should I avoid?
Sometimes the best I can do is write down my experience. It helps me clarify my thoughts and put words to what I’m feeling. It serves as a record that helps inform future discussions (and/or frantic emails) to my providers. It allows me to practice embodiment and work toward healing without putting the onus on myself to solve Ehlers Danlos Syndrome or Dysautonomia. And sometimes it’s challenging to capture my experience. This is the only body I’ve known, and it can do some things that would be extremely painful or damaging (or even impossible) for another person. So describing my experience to someone who can’t experience it can be hard. On top of that I manage many painful injuries regularly through exercise and body work to stay ahead of greater instability and subluxations. But sometimes old injuries become inflamed, and they can overlap causing greater pain and physical instability. Between the Ehlers Danlos Syndrome and Dysautonomia symptoms, it can be hard to understand exactly what I’m experiencing. (Is my headache and nausea a symptom of high blood pressure or related to a neck subluxation?) And even if I can, I can’t always determine why. (Is blood pressure high due to anxiety, poor circulation and blood pooling, or increased pain from an injury?)
What I’m learning is that I may never get all the answers I crave. But I will make it to the other side of this flare. While understanding what’s happening to my body can obviously help me manage my symptoms, it’s not the only way. Sometimes focusing my energy on deciphering my symptoms when I’m in the middle of experiencing and managing those symptoms is asking too much of my body and mind. It’s hard enough being chronically ill with an incurable illness, assigning myself the role of detective can be too much. I work to keep notes so that I can discuss all the possibilities with all my various doctors. And while my care team is hard working and trusted, there’s no “Dr. House.” Some flares are going to go unsolved and that has to be okay. When it comes to figuring it all out- I’ll stick to Clue.
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