Infiltration therapy cervical spine (also available for diagnostic)
The beginning of all my symptoms.
I made Vojtatherapy at the very beginning of my illness for about 1 year. You have to lay in different positions and you do not have to do something actively. Various points on the body are pressed, held for some time and then released. At first, I at least had a primary improvement. I was stable for several hours. However, that has never held a very long time. Vojta helps to stabilize joints without moving actively and I really like this form of therapy.
A little bit better right after the therapy but then more cracking, more instability and worsening of the symptoms.
Normal physical therapy
Isometric exercises help me if I do the right amount, at least sometimes to be a little bit more stable during the day. Unfortunately, that doesn’t last very long.
After any other therapy has led to a massive deterioration I ‘m doing very static Pilates exercises now. The lying down exercises where I just bring tension to every single muscle are very good for me and the breathing exercises are very relaxing and meditative. It strengthens the lower back and leaves a basic tension at least for a time. I still cannot see a extreme progress but it could not be expected. The most important thing is that I have found something which I can do daily without casing deterioration.
A very gentle way to train the muscles is the water therapy. Because of the water resistance the deep muscles can be trained very well without to much pressure on the joints. In addition, the temperature of the water is very nice. For patients with Dysautonomia it is recommended to exercise in colder water. I only can do symmetrical exercises but overall I feel ok after.
Massage/ cranio sacral therapy/ manual therapy / Fango
In summary, all treatments whit mobilisation in manual therapy, relaxation of the muscles with massages or cranio sacral therapy lead to a lot more instability of my cervical spine. Once someone tries to get my muscles to work normal without overtension my spine starts to crack a lot more and the burning is much worse. Also the autnomic symptomes increase rapidly.
Chiropractic is something that can damage us all a lot. Especially with instabilities in the cervical spine, it is not only dangerous it can cause massive and permanent degradation. In my case it not only worsened my cervical instability but also made my shoulder unstable.
Theraband / Gymnastic ball
I can do a couple of theraband exercises, especially the symmetrical ones. I like that I can decide how much power I can use for the exercises. With the gymnastic ball I can only do very easy exercises in a supine position. The ball is very unstable and makes it hard to control my muscles. Overall the theraband and the ball are nice exercise equipment which are easy to use and there are a variety of exercises available.
I had a Sling Trainer by myself and used it a lot. Unfortunately did far too much. At the time I did not know that I have EDS and therefore the exercises were much too strong in intensity. It is probably not the right thing for people with a connective tissue disorder like me but I like the mechanism how the sling trainer works. So I would totally recommend it. You can regulate the intensity by yourself and should start very slowly. You just need a little bit of space and can exercise every muscle group.
Muscle building with gym machines
I have tried for over one year to built muscles with big exercise machines and heavy weights. Unfortunately I had no idea that I had EDS. After a couple of month my muscle weakness worsened and I got additional instabilities in my knees, my hips, my SI joints and my shoulders.
PNF (Prioprioceptive neuromuscular fascilitation)
I tried PNF only twice. I already have been sick for 4 years back then and the instabilities in my neck were severe. PNF helps sometimes good.
My brunkow exercises were pretty similar to the Pilates exercises and therefore also good for me.
Taping works sometimes for me and gives me a little bit more stability in my neck. Especially then when the tape is just applicated. For me it is very important that the tape is not applicated with to 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.
I love my neck brace. It works great for me. I have 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 bumps and abrupt movement. I use my neck brace to increase my mobility on bad days. That means if I have a day with all of the worst symptoms where I usually would be on my couch the whole day I use the neck brace to be able to move in an upright position for some time. I 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 enough.
You can find my proloexperience here.
Was whether bad nor good for me.
Was in my case a very bad idea and led to a massive worsening of my instabilities.
I felt like my muscles were relaxed too much.
Autogenous training / progressive muscle relaxation by Jacobsen
Did whether harm nor help me.
That might sound strange but what helps the most at the moment is NO physical therapy, NO exercises but 2-3 times a week walking around for a while.
Areas on my head are ok, areas along the cervical spine lead to a lot of bad autonomous nerve system symptoms.
Therapies like naturopaths, homeopathy, vitamins, oxygen, vitamin infusions, traditional chinese medicine didn’t do anything positive. The vitamin infusions with the oxygen gave me a little bit more energy for a couple of hours.
I take Ibuprofen or Paracetomal if needed but try to avoid pain meds as good as I can.
Heat and Cold
Any kind of heat I cannot tolerate well because it relaxes my muscles too much which worsens the instabilities. Warm water is pretty bad for my dysautonomia symptoms. Cold does also influence my condition in a bad way.
Tai Chi / Qi Gong
I recently started a Tai Chi course and was very positively surprised. Every move is performed very slowly which was bearable for my joints but especially the breathing exercises really helped me to relaxe and I felt almost like 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 also led to more low back pain and a fairly large amount of fatigue in the next day. However I want to give it more time to see the outcome. For me more than one time a week is not possible.