Ehlers-Danlos Syndrome: Holistic Treatment

Dec 13, 2016

What Is Ehlers-Danlos Syndrome?

The connective tissue in the body is comprised of a mixture of proteins and other substances that provides firmness and resiliency to the body and its structures. Periodically, disease and other conditions affect these tissues and diminish the body’s underlying system. Ehlers-Danlos syndrome is a collection of hereditary disorders that affect the connective tissues, typically the skin, joints and blood vessels. Individuals with Ehlers-Danlos syndrome typically have overly flexible joints and stretchy, thin skin. More severe cases of the syndrome involve the walls of the blood vessels, intestines and uterus and is called vascular Ehlers-Danlos syndrome.

One characteristic symptom of the condition is Ehlers-Danlos syndrome pain. Additional symptoms include overly flexible or loose joints, stretchy skin, thin or fragile skin and fatty lumps located at pressure points. Associated symptoms include abnormal range of motion in the joints and increased susceptibility to wounds, difficulty healing. Additional symptoms include velvety skin, increased susceptibility to bruising, skin folds around the eyes, muscle pain, muscle fatigue and heart valve problems.

Ehlers-Danlos syndrome is generally considered a genetic disorder that is passed or inherited. The cause of Ehlers-Danlos syndrome is generally a defective chromosome that affects the formation of collagen.

Holistic Treatment for Ehlers-Danlos Syndrome

Ehlers-Danlos syndrome pain can be treated effectively using a holistic or naturally-based system of treatment. Several supplements are particularly important for boosting the collagen in the skin and rebuilding elasticity. Vitamin C, MSM, aloe vera, gelatin and hyaluronic acid all help replenish collagen and restore skin firmness. Apple cider vinegar and honey as well as vitamin D are also important for restoring the balance of nutrients in the body. Additional elements of a holistic treatment plan include diet and exercise. Maintaining a healthy diet of whole foods and avoiding sugar can alleviate general pain associated with Ehlers-Danlos syndrome. Yoga and other stretching activities can also tighten and realign the body’s structure and relieve pain.

General Feedback  

Posted by Charity (Michigan, US) on 01/10/2015

Can Gelatin Collagen Hydrolysate be helpful to strengthen connective tissue disorder (Ehlers-Danlos Syndrome)?

My son has been diagnosed with a mild case. After studying his condition, I am pretty sure I have it.

Last 2 years, I switched to "cardio only" to 30 minutes of stretching exercises a day which improved greatly.

Now I have been ingesting more homemade broths and Great Lakes. My joints seem better after taking Gelatin Collagen Hydrolysate. I have not been on it long enough to make a an assessment.

Thanks in advance.

Replied by Marina

I wasn't diagnosed with Ehlers-Dalos (EDS) until my late 20's and am now fairly disabled at 31 (looking back I probably starting having some "mild" symptoms in my early teens). Please join one of the great online communities (Inspire, Reddit, or Facebook). Many medical professionals have outdated or minimal knowledge on the condition.

Also, please be careful with the stretching. Yoga and stretching is normal not advisable for those with Ehlers-Dalos (Yoga can be done if modified properly, but Pilates is a safer option). Proper physical therapy and mild excersise is very beneficial for most with EDS.

As to the gelatin supplements, any benefit is likely a placebo. Ehlers-Dalos causes one's connective tissue to be weakened, there is no way to change the tissue or to produce new "healthy" tissue. Many individuals with EDS do have vitamin deficiencies and it is very much worth supplementing if you test low (low magnesium is very common in EDS and can exacerbate muscle pain).

Best of luck to you and your son.

Replied by Mira

Would chaga help?


Posted by Stephanie (Athol, Ma ) on 04/01/2015

I am wondering what things can help a 12 year old boy, I think this, coupled with his puberty, is the cause of severe pain he is currently in. Ortho doctors in the area have no assistance or help. Anyone have knowledge of puberty age Ethers Danlos?

Replied by Susanne
Ny State

About 3 years ago, at the age of 14, my daughter was diagnosed with EDS. Her symptoms also started at puberty. She had constant pain in all her joints (except for her fingers and toes) and some days the pain was so intense that she couldn't walk. She also had constant joint dislocations. I found a video on Youtube by Dr. Ross Hauser about a treatment called Prolotherapy, which Dr. Hauser said could be helpful in treating EDS.

I was able to find a medical doctor in my area of New York State (Neil Raff, MD) who offered Prolozone Therapy (a newer version of Prolotherapy). My daughter had all her joints (except her fingers and toes), her back and her neck treated with Prolozone Therapy over a 5 month span. Her last Prolozone Therapy treatment was two years ago, in June of 2013. Since that time, she has remained pain free with no joint dislocation.

She is now able to participate fully in all physical activities with no pain or problems.

Prolozone Therapy was truly the answer to a prayer. I urge you to look into Prolozone Therapy further and I hope it proves helpful to your son.

Replied by Robert Henry
Ten Mile, Tn.

HI U SUSANNE, , , , , glad things have worked out for your daughter.

The reason I write is to let folks know that there is a world of difference between Prolotherapy and Prolozone.

Prolotherapy is a shot of dextrose into your cartilage and bone and is the most pain I have ever experienced. I had 5 of these treatments to no avail.

I then learned of Prolozone which is a shot of Ozone into your problem. One shot cured my right knee pain. There was no pain with the shot. When I contacted my Tenn MD and questioned him about this, he had nothing to say. The reason being is that Ozone is outlawed in Tn and I had to go to Ga. to get the Ozone shot. Too cheap and too effective.

It's a money thing. Other than emergency medicine, the U.S. is in the dark ages as far as healing and nutrition is concerned.


Replied by Deb

Dear Robert Henry, First thank you for all your posts, I love your humor.

Because of your post I found a doctor in my area. Saturday I'm going for my first prolozone shot and I hope it works. I've had RA for 37 years and can't put any weight on my knee.

I can't say much for our doctors, but EC and the people on this site are the greatest!

I hope your health is doing better, my love to you and your wife.

Replied by Gina

Hi. This comment is for Deb from FL. Could u pls tell me who/where the Dr. is who did ur prolozone therapy & if it worked? Thx. so much!

Replied by Susanne
New York

Prolozone Therapy (a newer version of Prolo Therapy) worked miracles for my daughter who also has EDS. It has been over 3 years since her last treatment and she has had no joint pain or dislocations since. Look for a video on YouTube by Dr Ross Hauser. Best of luck!


Posted by Susan Mc (California, US) on 01/25/2015

My daughter has Ehlers-Danlos, we went to see a genetic's doctor and counselor last week, they specifically told her not to do yoga, as with being hyper flexible she could hurt herself. As far as exercise, they said low impact like an elliptical machine, as it does not put stress on the joints.

Replied by Katie

I agree and disagree. For 3 years now. I have been trying to relearn how to correctly use my body. Muscle to joint. Mind to muscle. And correct postural issues. Been a long road. And at times overwhelming. But not impossible. Doesn't take long to see results. I truly believe that a lot of pain involved with ehlers Danlos is misuse and over use of joints and from not finding correct muscles to engage for task. After 3 years. I'm not ready for a yoga class YET. Still ha ve some work to do. I'll get there eventually. I love seeing my body change. And it feels so good when you finally make a correction and find muscle. Thank you

Replied by Jennifer
Traverse City, Mi

To the person that has been working to relearn how to use your muscles and joints--please share what you are doing.

Replied by Sophie
United Kingdom

I am a little confused you have been advised AGAINST yoga for Elhers Danlos Syndrome. I have been a patient of Professor Graeme of the UK Hypermobility Clinic since 2008 and advice received then and even now is quite different. Yes, low impact exercise is advised for patients with EDS, for example, running, dancing etc can indeed be detrimental to an EDS sufferer because they lack stability in their joints, therefore such exercise can lead to grinding, subluxing or even dislocated joints and torn tissue. However Yoga when done correctly does not have the same effect. Yoga, pilates and yoga-lates is CORE stability and helps build strength in the joints. Prof Graeme explained when I was first diagnosed that the easiest way to look at it was, you have double joints. To support such joints you need double the strength in those joints and less weight inbetween. At the grand age of 31 years old, I am being medically retired from the police service due to EDS and since I am on the strongest pain relief available and still suffering from pain I have been put forward for a pain management programme which incorporates yoga into your daily routine. I have been advised whilst waiting for my placement to practice yoga or pilates at home or in a gym in the interim. Hope this makes sense to you and not just a load of blarb. Best of luck!

Replied by Anais
None Provided

I practiced yoga for about a year before stopping due to joint pain. Being hypermobile, a lot of the poses were simply too easy for me, so I tended to overstretch without realizing it. Each yoga session was followed by a few days of painkillers due to severe joint pain. If you were to tell me then that "yoga is relaxing" I would think you are out of your mind.

This was way before I learned I have EDS. Now I practice mindful movement (like Katie from Massachusetts), even for something as simple as walking (keep posture straight, don't swing hips too much, don't oversupinate ankles, don't overflex soles). It takes a lot of effort, but I've manage to reduce the amount of pain I have on a daily basis.

You just have to constantly remind yourself not to go out of the normal range of motion (you can Google for a chart or simply compare with a non-EDS friend/family member). Practice in front of the mirror. After some time (hopefully) it should come to you more naturally, and you would be able to work your muscles without wearing out your joints.

You really have to learn what works and what causes pain and adjust the muscles being used accordingly. For me, anything that calls for the use of shoulders, I have to be really really careful. I love the elliptical machine though!

Tai-Chi/Qi gong is something Ehler Danlos (Hypermobile) sufferers can consider as an alternative to yoga or pilates for balance and stability. It looks deceptively easy, but it forces you to concentrate on the muscles being used. Good luck!

Replied by Terry
Llano, Texas

I have a Ehlers Danlos and I've taught yoga for 10 years and done it for 20 before. I couldn't survive I don't think without it. However many or perhaps most yoga instructors today are too aggressive in their practices. Just as many types of people push their bodies too hard. Most Beginning yoga poses are range of motion exercises... many of which chiropractors have been recommending for years. Yoga instructor training and therapeutic styles could be very helpful in developing a yoga practice for ED patient. The many many benefits of a yoga practice should be considered before systematically ruling it out. If a person is able to move his joints and can honor their limits and not push past them then the practice could be highly beneficial. Striving to push past natural limits is not helpful however.... and risk involving poses such as headstands, back bends and shoulder stand and plow should be avoided altogether but almost all individuals. Seek out a restorative style class with a trained therapeutic teacher and then talk to your doctor again. And look into " the health benefits of yoga "... google that phrase and see for yourse. Good luck to all. T

Replied by Mae
Minneapolis, Mn

Exactly what my doctor said as well and yet all of my peers are telling me it will help. Who ever wrote this obviously doesn't understand the disease.

Replied by Suzannah
St. Louis, Mo

I agree with Terry about not stretching past your limit. Sometimes it's really hard to know WHERE that limit is. I am hypermobile, and I did power yoga for two years until I tore some tendons in my hip from over-stretching. It happened VERY SLOWLY, micro-tears in the tendons each session that built up into a huge problem. Be safe! :)

Replied by Cheryl Eggers
Nemo, Sd

What do you recommend for the gastroparesis associated with E-DS (Ehlers-Danlos Syndrome)?

Replied by Kristy

Regarding yoga or yoga based exercises:

Yoga and/or Tai Chi make total sense if one is able to be careful not to go past their own safe limits. If a person isn't able to know what the limits of their own body are then they may need to take some steps to learn and possibly take some biofeedback classes and get in touch with what and when they feel sensations. I realize that biofeedback is mainly taught to learn to cope with pain but when I took a couple week course on it - I was able to feel much more in touch with my physical sensations and limitations. I have also realized that I needed to make certain that I never allowed myself to be medicated to the point of not feeling any pain (I maintain my movement with the help of a tens unit, low impact chiropractic adjustments, exercise, biofeedback, and I also take 400 mg of morphine a day which is half of what I was taking. I know that no pain may seem ideal but pain is there as your body's way of communicating with you.... so it is logical that you don't want to kill the messenger, no matter how tempting it may be. What I would like to hear about is what some of the people on this web page specifically did to learn how to move their body in ways that helped them, and the exact sort of movements within the yoga practices or Tai Chi that will give the most benefit for those of us with ehlers-danlos syndrome (hypermobile type). Also, I'd love to hear from anyone that has Ehlers-danlos along with severe scoliosis. Anyone with suggestions would be of major help to me. I am attempting to create an interactive exercise program using a gaming console setup to provide some standardized safe treatment exercises to help build a person's core strength while also (as in my case) doing whatever may be possible to alter the rather extremely fast onset of further twisting of my body. I had been working out at a gym doing weights and the machines and suddenly my curvature started to get worse, so much so that I felt as though I had been turned into a corkscrew.

Thanks in advance for any help - Kristy