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.
Quotes and links are freely available information from the internet and not verified. These, and my experiences, are not intended as an alternative to medical advice.
“ The Ehlers-Danlos syndromes (EDS) are a group of conditions that affect the stretchiness and strength of supporting tissues in the body, including skin, joints, blood vessels and internal organs. They vary in their impact from very mild through to very severe.
What are the Ehlers-Danlos syndromes?
The Ehlers Danlos syndromes (EDS) are a group of conditions which are usually (although not always) inherited from parents. EDS affects connective tissue – people with EDS have a problem with the formation and structure of connective tissue in the body. Connective tissue is a particularly important component of skin, muscles and ligaments, blood vessels and heart valves.
Whilst the symptoms of EDS may be mild and undiagnosed, for some people with EDS the symptoms can be severe, life-changing and even life-threatening. “
https://patient.info/bones-joints-muscles/ehlers-danlos-syndrome-leaflet
Understanding EDS is understanding my body and vice versa.
Everyone with undefined and undiagnosed complaints searches for a possible cause themselves. Complaints and the experience of complaints differ so much from patient to patient that it is often difficult to project this onto yourself.
I have had EDS complaints from a young age and that makes it difficult to understand and feel what it is like to have no complaints. I saw others have strength and do things that I could not do but could not explain what
Self-diagnosis can work but before I could match the described symptoms with my own complaints a lot of time had passed. Symptoms that an EDS specialist might have noticed very quickly, but unfortunately there are not many doctors who recognize them. In retrospect, denying the symptoms was a defense system to not give in to a condition about which nothing, or only very little, was known. I thought: “Yes, I can rotate and move my joints more than others, but hypermobile? No, someone who practices gymnastics is much more flexible. What I can do is just a quirk that cannot possibly lead to complaints. How many complaints must a gymnast have?
It was only during hypnotherapy, when I discussed my complaints with my psychologist and looked back at how and when they started, and what the cause could be, that I realized that my complaints can be traced back to low body tension from a young age. Relaxing my body has always been annoying, caused problems, pain.
As a child, bedwetting occurred when I was relaxed, happy, so I had to tense my bladder in a deeper layer of my consciousness. My posture was bent, hunchback-like; so I had to tense and straighten my body. I fell spontaneously when I was lost in thought; so I had to tense and strengthen my legs. This tensing of my entire body, in my deep subconscious, caused pain, overtiredness and was unsustainable in the long run. In retrospect, complaints were unavoidable.
Then I delved further into EDS. Saw that every aspect of the Beighton score applied to me and went to my GP with this. I felt embarrassed to present my self-diagnosis to the GP and her first reaction was also condescending. But she also saw my hypermobility and that this could cause my complaints. I am still awaiting a genetic test by an EDS specialist.
Living with Ehlers Danlos Syndrome 