I’m pretty sure this is the longest I’ve gone without a massage since I learned that they’re critical to my pain management and well-being. Unfortunately, it doesn’t appear that I’ll be getting one anytime soon. While I’m thankful I’m still functional without massages, I can’t say I’m comfortable.
When I don’t get bodywork, I wind up in a numb place that’s hard to describe. I know I’m sore, but I mostly ignore the pain or push it to the back of my mind. It’s a coping technique to be sure, but it helps. Once I reach that point, I usually can push through and pretend the pain doesn’t exist, although it definitely does.
If I let my mind focus on the pain and discomfort, I can feel all of the places that aren’t happy with me right now, which is practically everywhere.
The soreness and pain almost always start in my right shoulder and back. While I know what happened to my shoulder, I’m unaware of anything happening to my back. My bodyworker told me that much of the area around my spine is caked in scar tissue. My best guess is that it stems from repeated trauma while playing soccer while growing up, before I knew that I have EDS.
When I start to feel the pain, I physically compensate for it, which spreads it to other areas. Tightness and soreness in my back and shoulder affect my right hip, which in turn affects my left hip, and then the pain goes back up again. Sometimes it just keeps going down my right leg and makes my knee sore from walking funny, or it aggravates my already damaged ankle.
That’s when I really feel it: when it starts spreading and I overcompensate. I typically can’t ignore that. I’m familiar with the typical pain patterns, likely because I feel them move from one place to the next. That’s the not-so-fun part. Once I get through that, however, I can more easily push the pain away.
One of the most difficult things about all of this is that I never get enough sleep while this is happening. Chronic fatigue is a common EDS issue and something I’ve written about in the past. It really ramps up when my entire body is sore. Usually, nine or 10 hours of sleep helps me to feel rested. But currently, I can sleep for 12 hours and still wake up tired.
As I’ve previously mentioned, if I could get rid of only one EDS symptom, it would be chronic fatigue, which affects everything else and makes the other symptoms harder to deal with. Luckily, since I’m currently working from home, I can sleep in a bit and still “get to work” on time.
And as I’ve been doing throughout the ongoing coronavirus pandemic, I’ll leave you with one of my favorite positive quotes, from Albus Dumbledore in “Harry Potter and the Prisoner of Azkaban,” by J.K. Rowling: “Happiness can be found even in the darkest times if one only remembers to turn on the light.”
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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