Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice. I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
Muscle difficulties are common in every phase of EDS. Muscle pain, cramps, fatigue and weakness can be caused directly or indirectly by incorrect connective tissue. In addition, the muscles must constantly correct our posture.
All my EDS complaints can be traced back to low body tension. Every movement is formed by tensing my muscle tension too tightly and releasing it too far. This happens everywhere but was first noticed while walking. Conscious walking means that my leg muscles are already tensing before my foot is put down and requires strength from my muscles. Unconscious walking is putting the foot down and at the moment that my joints are compressed too far, my muscles are triggered and tensed. This happens unconsciously and in a fraction of a second, but it does have a major impact.
Conscious walking eventually causes muscle pain because the muscles are tensed more than necessary, unconscious walking eventually causes joint pain and there is a high chance of tripping. Both forms of movement are tiring, both physically and mentally.
Having to think, even if it is in a deeper layer of consciousness, applies to every movement and every muscle. Whether it is a voluntary or involuntary controlled muscle. A muscle is not automatically strong enough for me in an involuntary situation. For example, my sphincter muscles are not strong enough in a normal position to retain urine. My neck muscles are not automatically strong enough to support my head and my head therefore balances on my cervical vertebrae, resulting in a stiff posture.
Maintaining this force cannot be maintained indefinitely. This makes EDS disabling in the long term and the pain becomes increasingly severe as it progresses. External aids such as braces are a means to distribute the force and remain mobile for longer.
Living with Ehlers Danlos Syndrome 