My experiences with Ehlers-Danlos Syndrome

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

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

I am using:
Knee braces on both sides when I have to walk longer 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 as well
Neck braces when sleeping, when going out of the house and for really bad days (two soft ones and one hard collar)

Braces stabilize the joints passively, but they are not really a long term solution. They also weaken the muscles, which 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 that 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.

In physical therapy we mainly concentrate on the strengthening of my core muscles; we do not work directly on the cervical spine. Starting with the stabilization of my SI and lower back, moving further to my legs, and then passively stabilizing my cervical spine by using my arms. I am only exercising while being in a supine position without any pressure on my joints. I am exercising mainly isometric, without stretching, without manipulation and without resolving muscle spasms.

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

When I exercise at home, I use a special gymnastic mat that reduces pressure to my back, a gymnastic ball, a gymnastic band and a balance pad.

For sitting and lying down comfortably, 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, and this 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.

To sit on my couch, I am using a pillow for me legs, so they are always in an elevated position. Additionally, I support my lower back with pillows, which helps to sit in a physiological position. My head has to be in one line with my spine to prevent my ligaments from further overstretching.

When I am walking, I try to pull my belly to my spine, because that is supposed to stabilize my lower back. Also, I am wearing supportive shoes, no heels, for example hiking shoes with shoe inserts. If necessary, I use braces to support my knees.

The cervical spine instability makes little things, like brushing or blow-drying my hair; taking a shower or brushing my teeth; or having an appointment with the hair stylist very complicated. This, again, means that I have to adapt a lot. For example, if I take a shower or brush my hair, I am holding my head on one side; I rarely blow-dry my hair. When I have an appointment with my hair stylist, I usually try to hold my head with my hands. Brushing my teeth works far better with an electrical tooth brush.

I try not to lift or carry any heavy items. If 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, however, 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. Moreover, I have to choose the car with the best shock absorber (sport cars are killing me).

If I follow all those little “rules”, I can cope with my disabilities far better. But of course 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.