The treatment for EDS doesn't have a set protocol. The treatment for each patient is tailored to fit their needs. The treatment for EDS is supportive at best for the moment. Treating the symptoms of the disease is what physicians focus on. There are some experimental treatments involving injections of ascorbic acid on a daily basis, but this is experimental, and not a mainstream treatment.
Bracing is one area that I personally have a lot of experience in. I have had over 50 different braces in the past 8 years, the most impressive of course are my KAFO braces which are custom molded to my legs. They reverse engineered my legs and build carbon fiber braces around the plaster versions of my legs and when they were finished they fit like a glove.
The other way that doctors help to manage your EDS is to manage the symptoms. This includes the gastric, inflammatory, and pain issues. Now bear in mind there are other disorders associated with EDS. But we are not talking those right now. Our main focus at the current time is just the symptoms from EDS.
Pain is a huge issue with EDS. and Inflammation is one of the key reasons for pain. When a joint dislocates, it causes the bones in the joint to rub together which causes inflammation and pain. Depending on the severity of the joint laxity, a person's joints can sublux and dislocate several times a day. And this also puts strain on the muscles, which can cause micro tears within the muscle.
So using anti-inflammatories such as NSAIDS. Inflammation is reduced and hopefully so is the pain. But this often is not the case so stronger medications are needed. Several different therapies are used. Click on the link below to read the article I wrote on all the pain medications I have tried and the different pain management options there are out there.
Before I had those, when I was in the Army, I had several braces, one pair for each set of joints, wrists, elbows, knees, ankles, etc. This took quite a while to put on, they were hot, cumbersome and had to be worn under my uniform so it was very uncomfortable.
Braces help with the pain, but like I mentioned before, depending on the time of year and the climate that you live in, they can be very hot, cumbersome, and can chew up your skin. To counteract the irritation to the skin, I wear athletic sleeves under the braces and compression stockings under the leg braces. This helps with the pain and chaffing so it's a double whammy.
And I was recently diagnosed with POTS. And while I was talking to my doctors about how to manage it, I learned that compression can help deal with some of the symptoms. I had never put two and two together that I did feel better while I was wearing the compression stockings. But once I learned about it, I thought back it made sense.
Physical therapy is another aspect of treatment for EDS. Strengthening the muscles that hold the joints together will help keep them from slipping in and out of socket as much and in the long term will reduce the amount of pain and damage they sustain. This takes time and specialized therapy.
This should be done by a Physical Therapist familiar with EDS so they understand how the biomechanics of the disease affect the joints differently than they do of the average patient. This will reduce the risk of further damage to the joints. Aqua therapy is a great form of PT because it is all resistance and zero shock. This includes walking on a submerged treadmill, in a pool, or swimming.
PT is important but overexertion needs to be avoided because this can lead to causing more damage than good and cause further problems down the road. Moderation is the key to any good therapy program when it comes to EDS. Bear that in mind. You may feel great one day and want to push yourself harder than normal, but you may end up regretting it for the next three days. So take it slow and steady. And keep to a pace thatyou can do every time.
And lastly we come to the management of the gastric symptoms. This can vary in range from simple acid reflux (GERD) to chronic constipation and diahhrea which seems to come in a vicious cycle of either or. There rarely seems to be a happy median between the two. Also if the patient is on narcotic pain medication to manage the pain associated with EDS, their bowels tend to slow down which leads to chronic constipation. Then medication is given to reverse these effect.
And then medications are sometime prescribed to manage the side effects and this can create a huge list of medications that the patient takes on a daily basis. Finding that perfect balance can take years and sometimes modifications to the therapy may be required over the years.
But once an effective treatment is found, it should not be messed with. Make sure you have a medical team who is educated in dealing with EDS and the related issues associated with it. This is paramount in getting the best quality of care possible. This should not be attempted on your own. Only with a licensed medical team, who are experts in their field.
They have years of education and experience in clinical medicine. No one knows your body better than you. But finding the best way to treat you is a team effort between you and medical experts.