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.
Studies have shown that no ammount of collagen, gelatin etc can help with EDS, as the problem of the EDS body is that it cannot utilize it. Vitamin C could potentially help but even that has not been proven. As for Yoga and Pilates, I would be super cautious before advising any EDSr to engage in it, as many have had serious injuries with both of those forms of exercise, some of which incapacitating. I have personally suffered multiple rib subluxations with yoga and Pilates before realizing that this was not doing me any good. Head stand positions are a no-no, as due to lax blood vessels the rush of blood to the head caused me acute migraines and chocking. I also suffered tears in both aductors, the psoas muscle and have since had femoral nerve damage as well. The only form of exercise I have managed to withstand is walking, swimming, Tai Chi and Qi Gong.
I came across this in my studies and I'm wondering if anyone has tried Hawthorn "The oligomeric procyanidins in Hawthorn have demonstrated a collagen-stabilizing activity in vitro, enhancing the cross-linking of collagen fibers, and thereby strengthening connective tissue.33"
I'm not sure if any studies have been done with this herb but it's worth a look.
I'm 31 and was diagnosed four years ago. The only yoga I do is chair yoga for seniors or very gentle restorative yoga. Many EDSers are from yoga backgrounds, drawn to yoga, and have the ability to be rock stars in yoga class. It's not a matter of "can", but "should". With EDS your ligaments and tendons are not rubber bands but rather like used bubble gum that stretches out and can become progressively looser. I still like it for lymphatic drainage and circulation. Gelatin doesn't hurt. It doesn't fix faulty collagen fibril production, and is definitely not a cure-all for EDS. I like it for the easy protein. I also think the amino acid profile helps with structures unaffected by EDS collagen like the meniscus, which is prone to tearing because of our increased range of motion.
One thing I have found really helpful is to take a complete medical history of yourself, this is time consuming, also note who else in your family has any similar symptoms and why if you know. Try doing it on a computer document so you can clearly search a term or illness if need be to assist in review of what you have listed. Have those around you that you trust and are objective look at those issues too so you have an honest objective timeline of your health and what and when it changed so you can on paper see a pattern. Then at the time you became ill or symptoms became exacerbated document in detail all lifestyle components-body, mind, and spirit. Make sure you note any changes you may have made to your life at that time intentionally or unintentionally, especially stressors. You literally need to list an average day what you ate, drank, and did, including details of sleep and medications at that time of change, before and after. Often times than not we have poor gut health and habits as most Americans have, because if we do not eat what we need the body adapts and will trigger genetic components of our makeup. Just like it turns on it can turn off. When you start listen to those that are ill, watch enough Ted-talks by physicians that can personally attest to this and practice this, the nutrition assessment we all need that constantly changes with stress-age-food availability & quality, and have lived it, you start to see the pattern. We are turning on and off genetic issues. That is why you have seen ms, cancers, immune dysfunctions, arthritis, allergies, collagen diseases, pots, diabetes and many others disappear when the entire body is addressed and supported. It may take time and a lot of different strategies, but to ignore one aspect of oneself is a recipe for disaster and will not produce the lasting effects we all seek. We all deserve to be loved, so let us be loved by our food, family, friends, work, lifestyle and God, but to be open to it is crucial. To quote one who has been followed for generations -let food be your medicine and medicine be your food. If one lacks exercise what do we do to put it in somehow? If we lack collagen do we drink homemade healthy quality chicken soup daily/weekly? If we have allergies do we assess and remove the culprit when found from our air, food and chemicals? If we look at modern life it is killing us so we must change and get honest, holistic, simple and pure. May we also learn from each other, each life is valuable in what it has done and what it can do.Godspeed! Keep sharing, keep the faith and never give up, we are all still alive.
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.
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.
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!
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!
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.
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!
The Dr I see for prolotherapy and PRP therapy for EDS said it can definitely start in puberty. I was diagnosed at 61 with mild EDS.
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
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
Ehlers-Danlos Syndrome (EDS) ligament laxity hypermobile c0, c1 and c2. ligaments not holding bones in the spine in place:
Try atlas orthogonal. Myles Koby reads bones to measure the spine upper cervical in Maryland EDS society.
7 adult neurosurgeons in the Usa. 1 children in Ann ArborMI, Cormac Maher.
Find excellent Drs through your medicare or insurance for the thoracic and lumbar. Try different dc. only atlas orthogonal for the cervical.
Then take flax seed oil flavored is best.
Turmeric, magnesium and pain and muscle homeopathic remedy by dc in Dallas 972 792 7500 bodylogic.com
Doug Kaufmann dr protocol dr Kam Yuen. Carol everett uk bluerayhealer. 600 ibuprofen. meloxicam 15mg. kerorotac 10 mg. find an internist who deals with hypermobility eds. medical medium bacopa, black walnut wormwood chamomile drops pills piping rock.com melatonin sleep 5htp. dc best to stay out of pain. drive safe. get enough rest. drink chamomile tea. honey vanilla/ eat fresh fruit veg. raw or steam roasted sauted. quinoa beyond meat spicey fav. no meat or sugar. causes pain and inflammation. Lots of stevia and no dairy. unsweetened silk cashew or almond milk. carob missy j's. glutern free jovial pasta. chebe pizza crust. be well. No positional weakness if getting a robotic vacuum cleaner. ask for help if lifting. always get to the dc if in pain or not sleeping without melatonin. Get well or have surgery.
What do you recommend for the gastroparesis associated with E-DS (Ehlers-Danlos Syndrome)?
Stretching is the worse thing for EDS, Avoid -resistance bands -most stretching exercises -weights -heavy isometrics -"no pain, no gain" -massage that involves stretching tissues -range of motion exercises that ask you to move to your full range of motion in hypermobile joints
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?
I wonder if you could tell me the name of the doctor your daughter saw for Prolotherapy. We live in New England and my 15 year old daughter might benefit from this treatment. blessings!
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.
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!
She stated in her comment that the doctor is Neil Raff MD.
Hi Suzanne, my daughter has an appointment with Dr. Raff, NYC and we hoped to contact you beforehand to learn how your daughter is doing now, 5+ years later? Praying you will see this message and respond!
Before jumping into this therapy, I suggest you take a look at "rosshauserreview.com". This person has some horrific stories to tell and she sounds very legit to me. My son has EDS and I am trying to help him with all the pain, but this therapy (and esp. this doctor) sounds pretty scary.
To the person that has been working to relearn how to use your muscles and joints--please share what you are doing.
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.
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! :)
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
I have scoliosis and mild EDS, hypermobile type. I've started using a Body Blade several months ago and am noticing some positive changes. My back pain is much less, my posture is much straighter and I just feel taller. The Body Blade strengthens the muscles in the back, both small and large - ones that we can't normal strengthen with gym equipment. I'm still in the early stages of using it, but it might be something for you to look into.
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.
Did you ever try using the hawthorn or find any more information?
For EDS (Ehlers-Danlos Syndrome) Try Black Seed Oil it's said this oil will cure everything except death or TRY Dead Sea Moringa powder mix with Coconut Water or Magnesium Oil massage on feet bedtime or last but not least Adult Stem Cells ..GOD BLESS