The Pain of Ehlers-Danlos Syndrome


woman with a bike Millions of people go about their everyday lives with pain that most people can’t see. Different people have different reasons why — mine happens to be Ehlers-Danlos type 3. Ehlers-Danlos syndrome is a genetic condition that affects every connective tissue, joint, muscle, and tendon in my body.

There are different kinds of pain in different places, and each day brings a unique combo. Most days my normal pain feels like when you raise your hand for too long and it starts to feel tired and weak, but that feeling is spread over my entire body. That’s the chronic muscle fatigue from my body working four times harder just to hold my body together. There is usually something added onto that though: back pain, stabbing ankle pain, sore knees, a painful hip joint or sharp pain when my bursitis acts up. I have mild headaches every day and migraines monthly.

Most days I don’t realize it unless I think about it, but other days it’s all I can think about. When things get hard I feel like every nerve ending in my body is exposed and hypersensitive to everything. It feels like my entire body is in a constant muscle spasm, and pretty much nothing helps. It hurts to get cold chills or for someone to accidentally touch me. On those days I’m lucky if I can go to class or make food for myself.

My good days outweigh my bad though, and that’s all I can ask for. Some days it does get hard. I get frustrated that I don’t have the energy to keep up with everyone else. I’ve learned to “save my spoons” and listen to my body and not push myself for certain things. The pain is something I have lived with my entire life. I couldn’t tell you the last day something in my body didn’t feel weird. But because I have lived with it, it doesn’t faze me. Most days I go without the pain bothering me, but on the days it does I am lucky enough to have an awesome family, amazing friends and a solid medical team that help me through it.

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What a Person With Ehlers-Danlos Syndrome Has to Think About

What does living with EDS look like? Medicine for all kinds of pain, migraines, nausea. Knee, ankle, finger braces and back up braces in my book bag and car. Compression socks and essential oils. Books and handouts for relearning how my joints work. All kinds of physical and occupational therapy tools to work with. What [...]