Infiltration cervical spine (also available for diagnostic testing)
The beginning of all my symptoms.
I tried Vojta therapy at the very beginning of my illness for about one year. You will be placed with your body in different positions, and you will not have to move actively. Various points on the body are pressed, held for some time, and then released. At first, I noticed a primary, short-term improvement: I was stable for several hours. However, this improvement has never been permanent. What I really like about this type of therapy is that I did not have to move actively, which makes it more comfortable than other forms of training.
I felt a little better right after the therapy, but then more cracking of my neck, increased instability and worsening of all neurological symptoms occurred.
Isometric exercises seem to be beneficial for me if I perform just the right amount of them. Sometimes, I will be at least more stable during the day. Unfortunately, that doesn’t last very long.
Due to the fact that ANY other therapy in the past has led to a massive deterioration of my condition, I ‘m now doing static Pilates exercises. While lying prone, I fulfill exercises that train my lower back. Additionally, I perform breathing exercises that help me to relax. Pilates strengthens the pelvic floor and lower back and leaves a basic tension for some time after. I cannot see extreme progress, but that could not have been expected anyway. The most important part is that I have found a therapy that I am able to do on a daily basis without causing deterioration of my symptoms.
Water therapy is a gentle way to train the muscles of the whole body, because of the water’s natural resistance. It reduces strain on the joints and the deep muscles can be reached quite well. In addition, warm water may be beneficial for some people since it relaxes muscles and enhances blood circulation. Patients who suffer from dysautonomia should exercise in cooler water. I am only able to do symmetrical exercises, but overall I feel good after.
Massage/ cranio sacral therapy/ manual therapy / fango
In summary, all treatments that include mobilisation, manipulation or relaxation of my muscles, for example, massages or cranio sacral therapy, lead to increased instability of my cervical spine. Once someone tries to get my muscles to work normally and loosens my muscle spasms, my spine starts to crack and burn even more. Also, my autonomic symptoms increase rapidly afterwards.
Chiropractic is something that can cause serious harm! Especially if you are suffering from instabilities in your cervical spine! Then it is not only dangerous, but could cause massive and permanent consequences. In my case, it not only worsened my cervical instability, but also caused my shoulder to become unstable.
Thera band / gymnastic ball
There are a couple of thera band exercises, especially symmetrical ones, that I can still do. Unlike with the thera band, I am only able to perform very simple exercises in a supine position with my gymnastic ball, because it is too unstable and makes it hard for me to control my muscles. Overall, the thera band and the ball are great exercise equipment, since they are easy to use with a variety of available exercises.
In the past, I possessed a sling trainer and used it quite a lot. Unfortunately, I exercised way too much, because at that time I did not know about my EDS diagnosis, and therefore the exercises were too intense. Sling training might not be the right device for people with a connective tissue disorder, but I still find the mechanism of how the sling trainer works compelling. So I would totally recommend it. It allows you to regulate the intensity of your training step by step, and every muscle group can be trained. Keep in mind to start very slowly.
Building muscle with gym machines
For more than a year, I tried to built muscles in the gym. I used heavy weights and had no idea that I suffered from Ehlers-Danlos syndrome. After a couple of months, my muscle weakness progressed and I developed additional instabilities in my knees, hips, SI joints and shoulders.
I only tried PNF twice, while I have already been sick for four years, and the instabilities in my neck were severe. PNF helped a little.
My brunkow exercises were pretty similar to the Pilates exercises and therefore also advantageous for me.
Taping works sometimes for me and gives me a little bit more stability in my neck. Especially when the tape was just applied. In my case, it is very important that the tape is not applied with too much tension, otherwise I will feel like my head is pulled backwards. Unfortunately, I have developed an allergic reaction to the tape and cannot use it very often.
Not much to say besides: I love my neck brace! It works great for me. I own a soft one and a hard one. The soft one, I am wearing every night to sleep and during the day when I have to be in a car, a bus, or some other kind of transportation with the risk of bumps and abrupt movement. On the other hand, there is my hard collar that I use on bad days where a lot of stability is needed.
My braces enable me to be more mobile on bad days; for example, if I have a bad day with the worst symptoms and usually I would just stay on my couch, waiting until it is over, my neck brace allows me to sit upright for a bit. I am aware that for most doctors using a neck brace is a very bad thing. It causes muscles to weaken and eventually makes the instability worse, but I still see this as the lesser evil. Nevertheless, I avoid my neck brace as much as I can, because I don’t want to lose all my muscles in my neck. There is a fine line between using it too often or using it not often enough.
You can find my proloexperience here.
Was whether bad nor good for me.
In my case this was a very bad idea, and led to worsening of my instabilities.
I felt like it relaxed my muscles too much.
Autogenous training / progressive muscle relaxation by Jacobsen
Did whether harm nor help me.
That might sound strange, but what helps me the most at the moment is NO physical therapy, NO exercises, but to walk around for a while up to three times a week.
Areas on my head are ok, areas along the cervical spine lead to a lot of bad autonomous nerve system symptoms.
Therapies such as naturopatys, homeopathy, vitamins, oxygen, vitamin infusions, traditional chinese medicine didn’t do anything positive. The vitamin infusions in combination with oxygen gave me a little bit more energy for a couple of hours.
I take Ibuprofen, Paracetomal, Novalgin and other meds if needed but try to avoid them as good as I can. Lately, I started to try medical CBD, which works quite well.
Heat and cold therapy
I do not tolerate any kind of heat well, because it relaxes my muscles too much, which worsens the instabilities. Warm water is bad for my dysautonomia symptoms, and so is cooling my body down.
I recently started a Tai Chi course and was positively surprised. Every move is performed slowly, which was bearable for my joints, but especially the breathing exercises really helped me to relaxe, and I felt almost as if I would gain some energy through it. I do not know how I will tolerate Tai Chi in the long term, because although I feel like it improved my overall condition a little, it unfortunately led to more lower back pain and a fairly large amount of fatigue in the next day. However, I want to give it more time.