My experiences with Ehlers-Danlos Syndrome


Treating EDS especially with all my comorbidites is a very complex and complicated task and associated with many setbacks.

Because of all the instabilities throughout my body which I developed over the last years I am mainly working with physical therapy and braces.

I am using:
knee braces on both sides when I have to walk long distances
hip braces for both sides which I luckily don’t have to use often by now
a lower back belt which I am wearing a little deeper so it stabilizes my SI joint and my hips
neck braces for sleeping, for going out of the house and for really bad days (2 soft ones and 1 hard collar)
My neck braces are the only visible aid I am using which is why I let someone sew covers for it so they look like a scarf.

Braces stabilize the joints passively but they are not really a long term solution because they also weaken the muscles. This is why I wear them as less as possible but as much as necessary.

For me it is absolutely indispensable to have physical therapy twice a week. Without my exercises I can literally see my muscles get weaker and weaker. I am lucky because my therapists are totally on my side and adapt to my special needs. After a while we found a concept which at least does not make me feel worse.

There are always setbacks but at least, after 1,5 years, I can say that my condition is at a constant level. Also we have to be realistic, the damage that so far occurred cannot be undone. But I try to improve my overall well being and make it bearable for me to live like this.

During physical therapy we mainly concentrate on strengthen the core muscles. We do not work directly at the cervical spine. Starting with the stabilization of my SI and lower back, to my legs and then passively the cervical spine using my arms. I am only exercising while being in a prone position without any force to my joints. I am working isometric, without stretching, without manipulation and without resolving muscle spasm.

Once per week I am exercising alone at home. I try to have exercises at least every second day. During my exercise free days I try to move as much as I can, take a walk or change my position at home as often as possible.

To exercise at home I am using a special gymnastic mat which reduces the pressure, a gymnastic ball, a gymnastic band and a balance pad.

For sitting and lying down comfortable I use special pillows between my knees, for my neck, a seat cushion and a very good mattress.

Because of my SI joint instability my nerves are compressed when I am sitting on a hard chair which leads to pain in my legs. Thats why I am using my seat cushion in busses, cars or even at home if I have to sit upright for a long time.

At home on my couch I am using a pillow for me legs so they are always in an elevated position and to not extend my knees too much. My lower back is supported by pillows which helps with sitting in a physiological position. The head has to be in one line with my spine to prevent my ligaments from overstretching.

When I am walking I try to pull my belly to my spine which stabilizes my lower back. Also I am wearing good shoes, no heels, for example hiking shoes maybe with shoe inserts. If necessary I use braces to support my knees.

The cervical spine instability makes little things like brushing my hair, blow drying my hair, showering or brushing my teeth, having an appointment with the hair stylist very complicated. This again means to adapt a lot. For example if I take a shower or brush my hair I am holding my head on one side. Blow drying my hair is usually not happening. When I have an appointment with my hair stylist I usually try to hold my head or hold my muscles very tense. Brushing my teeth works far better with an electric tooth brush.

I try not to lift or carry any heavy items. Do I have to travel long distances I am using a suitcase with wheels and a very light weight backpack. I avoid full busses or trains so I do not have to stand. I also avoid crowded places with many people to prevent me from getting hurt.

I still try to be as independent as I can but it is always easier to have a second person with me. I am not able to drive a car by myself which makes me highly dependent on my family and friends if I want to go somewhere. Thats also not uncomplicated because I have to choose the car with the best shock absorber (sport cars are killing me).

With all those actions I can cope with my disabilities far better but it is absolutely impossible that I could include all factors. Because of the instabilities, dysautonomia and mast cell activation there are just too many triggers. I try to follow as many rules as possible to stabilize my condition.

To know more about my other comorbidities please read my experience with dysautonomia and mast cell activation syndrome.