Does bracing cause atrophy? It might actually reverse it!

Does bracing cause atrophy in hEDS patients? Why I think, in many cases, it can actually prevent atrophy and even reverse it! This has come up in patient support groups, so I wanted to write a post about it.

I have a complete anterior cruciate rupture in my left knee which occurred in 2016, and have not had surgery for many reasons, which I will explain in another post. Initially, I injured the medial collateral ligament of my right (opposite) knee, and, due to limping and putting extra pressure on my left leg, my left leg spontaneously dislocated in someone’s living room 6 months later, just stepping backward. My anterior cruciate ligament completely ruptured. Clearly it was already stretched out, as I had very hyperextended knees (see picture) since childhood. Finally it was so damaged that a normal motion caused the last fibers to rupture and cause a complete dislocation.

While I had no insurance at that time, I did get an MRI for diagnosis through hospital charity assistance, but no visits to the doctor as it was a “non-essential” surgery. My knee dislocated completely three more times over the following year, and the only way I could walk on it was to slam it back into place which caused more damage. Not ideal, but how do you get to a doctor's office to fix the dislocation if you cannot walk from wherever the dislocation occurs?

I cannot walk without a knee brace on my left knee on uneven surfaces or my knee will dislocate. Initially, I could not walk on that knee at all without bracing. However, with a knee brace, I can walk and hike. This actually prevents atrophy and reversed it, in my case. I am able to do normal activities and even go on hikes which I could not do without the brace.

Initially, I could not walk at all, and even kicking underwater would dislocate my knee. Some of the ligaments (collateral ligaments) have tightened due to bracing, and I can now swim fine without any bracing and walk around the level floors of my house without a knee brace!

After I had the injury, I had severe atrophy of my left leg which was very apparent visually. Now that I have found appropriate braces (for me), the atrophy is completely reversed and undetectable.

Bracing in hEDS patients prevents abnormal motion of the joint but allows for normal motion so that the muscles can still be used. This is not like bracing a broken bone which completely immobilizes the joint. That will cause atrophy. But bracing a joint ideally allows for normal motion and activities, and can prevent and reverse atrophy by allowing normal movements within the correct range of motion.

I have arthritis in my thumbs and index fingers and was never recommended to try bracing to keep the ligaments from further overstretching. This was not ideal because it could have prevented further arthritis which now, after 3 years, is finally showing up in bony changes on radiographs. I have issues with my thumbs, index fingers, and wrists, but only 3 surgeries on each hand was recommended, no PT or bracing or education, so the arthritis has progressed. Now I need bracing just to use silverware, and it is still painful.

Bracing can also help ligaments heal when they are stretched due to injury or even just life activities with EDS, while still allowing normal motion (and I wish it had been recommended for my first knee injury to prevent the second knee injury and my hands/thumbs to prevent further ligament stretching and arthritis and worsening carpal tunnel syndrome).

The key is to find the right brace for your particular injury or instability.

In the case of my knee, one doctor gave me an “offloading” knee brace. This is a brace that actually pushes the joint to the side as you walk, supposedly to relieve pressure on the damaged meniscus, which, in my case, was the wrong option since I didn’t need to add excess motion to the joint, pushing my knee to the side with every step. I just needed it to prevent dislocation and to prevent excess range of motion side to side so the collateral ligaments could tighten up and not continue to be overstretched. The Medicare approved braces did not help either as they had hinges that did not always line up, and the brace was not tight enough around the knee to prevent motion. My favorite brace, after trying many, is a generic from the Ingles grocery store. But it works for me.

I did get a special brace, after talking to various brace companies, because I wanted to try to ski on a trip where that was included. I got the brace, knowing it might not be enough. I wore that, wrapped in an ace bandage, and was able to ski… not crazily like when my knee was undamaged, but I could do the easier slopes, and I never thought I would be able to do that again!

Also, due to instability, I have arthritis in my wrists, thumbs and index fingers that could have been prevented from working by wearing braces. Now, without bracing, I cannot cut food or use silverware or open a cat food can. These braces help me to do the activities of daily living that I could not otherwise do.

I have actually found a study that said, for hand dysfunction in EDS patients, bracing can have as good an outcome as surgery, particularly in mild to moderate cases, and mine was initially mild. Now it is severe, and that might have been prevented with bracing had it been recommended!

Using a Serola sacroiliac belt helped me to sit without pain and walk without pain… since then I had this pain corrected with prolotherapy which made the 30 year pain go away, but in the meantime it allowed me to do what I would not otherwise be able to do. Prolotherapy has been shown in studies to increase the strength and thickness of ligaments.

So, if bracing allows you to use the joints normally and keep them from subluxating or dislocating, it allows you to use the muscles normally and actually prevents atrophy. After 10 years in a knee brace you cannot visualize atrophy in my left leg at all, which would not be the case without the brace which allows me to hike on uneven surfaces. This would not be possible without bracing.

So consider the purpose of the brace. If it helps you function normally and use the muscles to perform activities in the normal range of motion, than you are building those muscles, not causing atrophy.

Also, due to neck instability, I have periodically had to wear a hard neck brace, not because my neck hurts, but because of the nerve pain down my arm which would get so severe I would beat on my arm, even though it really wasn’t an arm problem. After wearing it for a while, I was able to take it off for longer and longer periods of time before I felt the debilitating arm pain, until I was able to leave it off completely. In that case it is holding the body in the correct alignment so the ligaments can heal and tighten.

Even compression can help with this if all you need is extra support. When I was a kid doing ballet, we were required to wear tights as support to prevent injury. I find that leggings can also provide similar support.

There is also the effect of limping on the entire postural chain. Limping on a knee affects the hip, and abnormal posture can damage the hip joint. The hip affects the spine, and most EDS patients have spine issues, eventually. The shoulders then compensate as the body tries to keep the eyes level. So by not bracing the knee, it can lead to damage all the way up the postural chain. Many EDS patients have a very abnormal gait and posture due to this, and bracing joints can prevent other joints from compensating and becoming damaged.

It may take awhile to find the best brace, and sometimes you can’t find the perfect one. Keep trying!