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Writer's pictureBC EDS

How Testosterone Helps Me Manage Ehlers Danlos

Living with Ehlers Danlos Syndrome (EDS) can be extremely challenging. It is a rare disorder that affects the connective tissues, making it difficult for the body to hold everything in place. Daily activities can become painful and exhausting, causing a decline in quality of life. As an EDS patient, I have tried various approaches to manage my symptoms. However, it wasn't until I started supplementing with testosterone that I began to see some notable changes. In this blog post, I'll share my experience of using testosterone to help with energy, strength, and muscle growth, and how it has helped me manage my EDS.


According to research, testosterone supplementation can help with energy, muscle growth, and overall wellbeing. As a person with EDS, I noticed that I had less energy and could not engage in activities that required physical stamina. My muscles were always weak and prone to getting sore, which would take days to recover from. I discussed my concerns with my doctor, who suggested I try testosterone therapy. I also am taking chronic opioid therapy which can also decreased testosterone levels. I had my levels drawn and they were severely low. Within weeks of starting it, I noticed an increase in energy levels. I was able to perform daily chores more days (not all) and I was less prone to getting tired and losing balance.


Testosterone also helped me in building up muscle strength. Muscle weakness is a common symptom of EDS caused due to the laxity of connective tissues. It affects the joint’s stability, which makes activities like walking upstairs or standing for long periods difficult. With testosterone supplementation, my muscles became stronger, and I was able to do more without getting tired. It also helped me in being more consistent with my physiotherapy sessions. Physical therapy is crucial to managing EDS symptoms and building up muscle strength. Testosterone allowed me to get more out of these sessions as I was able to perform exercises that I couldn't do before, thus increasing the effectiveness of my therapy.


Apart from energy and muscle strength, testosterone helped me with muscle growth as well. EDS doesn't only affect muscle strength but also causes muscle atrophy (wasting away). The condition makes it difficult for muscles to hold structure and shape. Testosterone supplementation helped me in increasing muscle mass, and also decreased the chances of muscle wasting. It wasn't easy to gain muscles initially, but with time my muscles did grow, and I was surprised at the changes that were happening in my body.


There are a few things to keep in mind if you decide to use testosterone therapy as an EDS patient. Firstly, you must consult an endocrinologist or any other healthcare professional who can guide you about the suitable dosage of testosterone.


EDS is a tricky disorder to manage, and it can be a big burden on patients, both physically and mentally. Testosterone supplementation has helped me immensely in coping with my symptoms. It has allowed me to be more active and engage in activities that I couldn't before. I've noticed an overall improvement in my quality of life too. However, one must understand that testosterone is not a magic pill, but a compound that requires proper monitoring and regulation. I hope my experience and insights can help others decide if testosterone supplementation can be an option for them to manage their EDS.

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