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.
When I was 32, I developed an acute rheumatic infection in both my ankles. It was severe and I was very sick. The antibiotics my GP prescribed did not help and I was referred to a rheumatologist. This was a very peculiar doctor who played down my pain. It was only when he saw my blood test results that he recognised how serious the infection was, but he still insisted that a course of antibiotics would quickly clear it up. But it did not and i felt horrible and this continued three more times over several weeks. Each time he was convinced that it would quickly get better, and each follow-up appointment the blood tests showed only small improvements.
I lost confidence, but I was too weak to fight. After each course of antibiotics I felt a bit better, but not nearly as good as I, or the rheumatologist, had hoped. At some point I gave up and did not take antibiotics anymore. It took months, but slowly I felt a little better.
During one of the last appointments I told him how stiff and heavy my limbs, especially my legs and ankles, felt, even before the infections. He didn’t elaborate, felt my limbs, pushed and squeezed and assured me it was nothing, just the way he downplayed my infections. ‘ It is nothing ‘ was, what I remember, but I have to say that I felt very weak because of the infection.
About two years later, when I went back to my family doctor because of my stiff, heavy legs, he said that it would fit the diagnosis that the rheumatologist had made two years earlier. But that treatment would be very difficult. I was surprised and asked him, “What diagnosis?”. I never heard about fibromyalgia at that time so I had to look it up and of course I recognized much of what I read. But with no real treatment options, I focused on managing my pain, my stiff, heavy legs, by wearing compression stockings.
Fibromyalgia is a diagnosis of suffering. Every symptom applies, even if there is no logical, or as yet unknown, reason for it. My rheumatologist diagnosed me within five minutes by feeling and asking what hurt. He may or may not have told me about fibromyalgia at the time, but I remember him reassuring me not to worry. No wonder I had no confidence that doctors would take my symptoms seriously. My suffering was labeled and that was it. I was given no support, no prospects, no options, just a friendly shake of the head: ‘don’t worry’. Sadly, that is how it is for many people with a chronic illness. It could be fibromyalgia, PTSD, ME or many others.
Living with Ehlers Danlos Syndrome 