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.
Functional Neurological Disorder treatment was aimed at restoring the connection between body and brain. On the one hand through rehabilitation therapy, on the other hand through hypnotherapy.
In rehab therapy the emphasis was on the physical. In particular walking without consciously controlling my legs and yet not falling. By distraction, or having multiple exercises performed at the same time, an attempt was made to restore the unconscious control. However, in retrospect, my complaints do not come from a traumatic event, as is usually the case with FNS. The connection is not broken but disturbed, because the feeling of being able to walk and move normally fades due to years of pain, overload, and adopting a posture that is not good, but was the only option.
Hypnotherapy was aimed at restoring the connection between body and mind. Through self-hypnosis, I was able to experience my feelings more deeply with the help of the psychologist. In conversations between the hypnosis sessions, I had to indicate what I felt and what it did to me. The psychological state of hypnosis was pleasant, the head is filled and the body is released. After a while, I was able to bring my body into a state that the psychologist indicated at that moment. The goal was to feel my legs, muscles in a pleasant way. Like walking through sand, a nice walk or floating on water. What immediately became clear was that relaxation of my body, my muscles, was the most annoying feeling I could experience. Relaxation was pain, was falling, was urine loss. EDS is trying to keep the body together, to bind it where connective tissue fails to do so. The realization then came that all my complaints can be traced back to a basically too low muscle tension and body strength. Then I understood what Ehler Danlos was, and the experiences of others. Through hypnotherapy I was able to make the connections between all my complaints and I am eternally grateful to the psychologist for that. She looked beyond the diagnosis of FND.
Living with Ehlers Danlos Syndrome 