I have been doing physio therapy and massage therapy, since May 27th, 08 and that is going REALLY well!! I was prescribed 1 month of massage therapy, which I am almost done and 3 months of physio. I LOVE physio so much! It's physical activity that I can do that won't damage my joints. I was also very lucky to find PT's that REALLY know what they are doing! At the beginning I did 2 hours of PT 2 times a week and now I'm down to 1 time a week for 2 hours at a time. You can probably already guess that I cover a lot in those two hours! They sure work me hard. But it’s totally worth it! I feel great afterwards! And it is very fun because they are fun to work with! I do most of my PT at home but getting out of the house to the Clinic helps get me out of a rut.
I had shoulder pain, so I asked him about it. I was told to flex, extend and abduct and adduct my arm (to see the range of motion) and when it was pinching I knew it was subluxed. The pain was caused from an inflamed rotary (rotator) cuff caused from a subluxation. The Rotary Cuff are a group of muscles (tendons) that hold the Humerus (arm) in place. They are: The Teres Minor, Infraspinanus, Supraspinanus and Subscapularis Tendons are the connective tissue that hold together muscle. What was happening with me is, because the laxisity in the conncetive tissues the Rotator Cuff wasn't holding my humerus in place, causing it to 'fall', causing my dropped shoulder. Ok, that was a full dislocation. Mine was actually just a Subluxation (my joint was only partly out of the cuff.) The pain was caused from the rotator cuff being pinched (everytime I put my arm up.) With EDS it's impossible to shorten the tendons/ligaments but we can strenthen the muscle around it. So that's what we are doing now! Unfortunately, just after the right shoulder is strengthened, the left one decided to Sublux.
This is to strengthen the muscles around the shoulder joint (see above):
Suprasinatus (Empty Can)
Fexion and Extention - Range of Motion
Abduction and Adduction - Range of Motion
The next thing that we are working on is my leg. For those of you who have seen me recently would know what I am talking about. For those of you who haven't I will explain. I have developed a gait disturbance since the summer of 2006. Before then it would come and go, but then it just stayed. When I went to TCI, I was told that it was likely permanent nerve damage from the Tethered Cord. But you see, it improved after my Tethered Cord Release and then it improved again after my Decompression. After my Decompression, it didn't completely go away. What my PT did was get me to stand on that one leg and when it buckled at the knee, he knew it was a strength issue. This was likely caused from my injury I had December 2005. The exercises I am doing to strengthen my knee is step-ups and squats. Step-ups are for quad strengthening. I stand on a stair or step and try and stand on that on leg only, with the other hanging off the edge. This is also working on my very weak ankles too.
Straight Leg Raises
Standing ITB/Abductor Stretch
Another thing I am working on is my wrist. I pointed this out to him because it has been bothering be since my fall back in 2005. I had sprained the UCL (Ulnar Colladeral Ligament) and the RCL (Radial Colladeral Ligamnent.) I had damaged it way back when I had my fall and it flares up from Arthritis. I recently sprained the same wrist in 2008, on the TFCC (Triangular Fibrocartilage Complex.)
I wear a cloth brace every now and then when it is bothering me and when I'm doing things. The exercises I do are to work my Flexors and Extensors. The Flexors are the muscles on the inside of the arm and the Extensors are the muscles on the top of the arm. To work the flexors I simple do curls with an upward motion and to work the extensors I do curls with a downward motion. My wrist was cracking a lot and I was told that, it’s not good for it, because it will cause arthritis. These exercises are helping out a lot and my wrist isn’t cracking as much!
Working the Flexors and Extensors
When doing any exercises that require a weight, for EDS patients weight that will put any strain on the joint IS BAD! This will cause more damage than anything. I use a 1 pound weight at the very most since my joints are so small.
The next thing I am working on is my balance. I am doing this, by doing tandem walking. Tandem Walking is used during neurological examinations to test your balance. Since my TC Release my balance has improved greatly. I can toe walk like a ballerina! This is something I wasn’t able to do Pre-Tethered Cord Release. In saying this, my balance is still a wee bit off, so the tangents help with this. It is also helping with my posture too. I get yelled at when my posture is bad. Nah! Just kidding! It does contribute to the shoulder dislocation though, because then the joints pinch. That’s why it’s so important. There are times that my balance is so bad that I need assistance, still. Another thing I am doing to help with my balance is standing on a trampoline. At times I will give a ball to play with to have a distraction. I was going to try and get me to stand on one foot before, but I wasn’t able to at the time. I think I can now! YAY! By the way, I have been practicing on my bed. It works!
Another thing I am doing to help with my balance is standing on a trampoline. At times I will give a ball to play with to have a distraction. I was going to try and get me to stand on one foot before, but I wasn’t able to at the time. I think I can now! YAY! By the way, I have been practicing on my bed. It works!
The last thing that I work on (which is really the first) is my neck exercises. Obviously this is must, but I left it til the end for a reason. These have been going really well and even the first week or so I have noticed a big difference with the strength in my neck. I am holding my head up a lot better now!
Deep Neck Flexors
For my neck exercises I am working my Deep Neck Flexors, which are the muscles in the front of the neck on each side. To work these muscles I tilt my head forward ever so slightly. The goal is to not have those muscles contract because then the Suboccipitals will start to kick in. The Suboccipitals are the muscles at the back of your neck. I have another exercise for those. First I started doing them laying down and then we worked up to sitting up and now I am doing them towards the pull of gravity. I am laying on my stomach with my head hanging over the edge of the bed. Then I push my head forward and tuck my chin down. It is tough, but I guess the more I work them the stronger they will get!
I am also working on my Scalenes. These are the muscles that start from the first and second ribs and go all the way up the side of your neck. I work these with stretches also. This is done by slightly pressing my neck into a pillow.
As you can see these exercises and stretches aren’t too exerting. The idea is to NOT strain the muscle when doing them. ‘Less is more’ as my PT says!
I have been having issues with my overall Core strengthen lately, so I decided to start working on that. Some exercises include:
At the beginning I was working on my lower back, because I had A LOT of trigger points (or knots) in it, likely from my last surgery. That’s what I get for not doing Massage Therapy or PT then! I had mentioned about some lower back pain that I was having (I was getting scared that I was re-tethering.) She said that trigger points in your Glutes can cause this. For the non-medical people, your Glutes are your butt muscles. You have your Gluteus Maximus (which are the muscles in the back, that support your hips and make your legs move forwards and backwards,) Gluteus Meadius and Minimus (which are your hip muscles – or down the side of your leg.) Since she has worked on these, my lower back pain has lessened greatly. Getting the trigger points out will also help the strengthening process in physio. She also works all the way up my back because god knows I have trigger points galore!!
Obviously she is working on my neck muscles too. Because of the surgery there are a lot of trigger points that need to be released to help heal properly. She is now working on my Scalenes, which is helping with the strengthening exercises aswell.
She also works on my shoulders because god knows I am as tense as can be in the shoulder area! This is very weird when she does because there is a nerve that is affected just under your arm pits. I can usually feel it all the way up my arm when she stretches them.
I had no idea you can actually work on your TMJ’s with a massage. FYI: TMJ’s (Temporomandibular Joints) are your jaw joints. When she works on these to get the trigger points out, she actually works inside my mouth (with gloves on, obviously.) I have TMJ Disfunction aswell (it dislocates) so that’s probably also contributing to the jaw pain aswell. The TMD is because of the EDS.