Ehlers Danlos Syndrome (EDS) is an illness with many symptoms resulting from a defect in the way collagen is produced. While there is no cure at the moment, there are ways to support collagen production in the body to decrease symptoms and help patients regain quality of life.
Eating a healthy diet low in processed foods is recommended. Further tailoring of diet to optimize nutrition can be done with a registered dietitian. Specializes bloodwork can be utilized to determine vitamin and nutritient deficiencies. Supplementing with vitamins and minerals can help to prevent and/or ameliorate these deficiencies which can make symptoms worse. The following is a short list of supplements considered helpful to those with Ehlers Danlos Syndrome. As always, check with your physician and dietitian before taking anything new.
For excessive bruising, supplementing with Vitamin C can help. One study found that Vitamin C supplementation, even in those not clinically deficient, helped to reduce bleeding, wound healing time, and increased muscle strength.
L-Carnitine is an amino acid. It helps to transport fatty acids, and is involved in the production of energy for the body. Studies indicate that those with fatigue who supplement with L-Carnitine experienced a decrease in their excessive tiredness.
Magnesium is an important mineral. It helps with muscle soreness, sleep, inflammation, anxiety, and brain health. Magnesium also plays an important role in the synthesis of collagen. Unfortunately, oral magnesium supplements are not well absorbed. The best form of oral magnesium is in chelated form. Bathing in Epsom salt is also a good option, absorbing the magnesium transdermally. Please note that magnesium can be dangerous if taken with certain medications or with certain health conditions. Always ask your physician before taking magnesium.
Methyl Sulphonyl Methane (MSM) is a compound with antioxidant and anti-inflammatory properties. It has been shown to reduce cytokines production, which can decrease inflammatory markers in the blood.
The supplements mentioned above are a good place to start your research into figuring out what will work best for you. There are many ways to alleviate the symptoms of Ehlers Danlos Syndrome. It is important to make a plan for yourself together with your physician to get relief. If each modality gives you some benefit, collectively they can all add up to a significant quality of life improvement. For personalized supplement recommendations, make an appointment with Nasar Nutrition.
When vitamin d is not absorbed,orally, can you take it in a suppository form?
Great question Vivian! A better solution would be transdermal (through the skin) or sublingual (under the tongue). Both of these bypass the gastrointestinal tract.
Do collagen supplements make a difference with Ehlers Danlos patients?
Great question Ashley! There are currently no studies on collagen and EDS that would suggest it is helpful.
Would taking collegen supplements help with join pain at all in Ehlers Danlos patients? My doctor and physical therapist suspect that I have EDS-Hypermobile, but I can’t afford to go to a specialist yet to confirm. However, I’m having a ton of subluxations and was wondering if collegen supplents might help.
Hi Sam! Collagen supplements are made up of amino acids/proteins. Your body will use these amino acids to make more collagen in the body, but it will still produce defective collagen if you have EDS. There are no studies that suggest taking collagen will help with symptoms.
I have hypermobile EDS. I am aware that most articles say that one should NOT take collagen, as it has not been studied. However, I started taking collagen peptides anyway, knowing that there is nothing toxic about it. I have been taking it for about eight months, starting with 11 grams a day. I saw little progress, until I doubled that. It seemed that my fingers, wrists, left shoulder and left knee were improving slowly. I eventually upped it to 44 mg a day, and I can say that while my joints are not quite 100%, they are remarkably better, to the point where I can almost forget about them. They no longer dislocate, and I rarely feel any pain. I am 71, and I can now go up and down the stairs as easily as any young person. Please do not discourage people with EDS, especially hypermobile, from trying this. They should take Vitamin C and Lysine at the same time. This can make a huge difference in quality of life. I realize that doctors do not recognize anecdotal evidence as legitimate; however, most evidence begins as anecdotal, and when a pattern then emerges it becomes “evidence”. Collagen is a “can’t hurt, and might help” supplement. It doesn’t hurt to try it.
Hi Dale! Thank you for your comment. Collagen is promising in anecdotal evidence, which is why it would be amazing to have a real clinical trial comparing it to regular protein supplements along with a placebo to see if can be helpful for more people who suffer from Ehlers Danlos Syndrome. I do hope we see more research soon!
Would bone marrow transplant not heal the with body’s production of collagen? By introducing healthy bone marrow?
Hi Kate! That is a great question and love that you are thinking in a problem-solving sort of way! Unfortunately, collagen is made by fibroblasts which are throughout the body. With EDS, our bodies have faulty instructions for making the collagen. What we really need is to find the gene that encodes the instructions for faulty collagen and edit it out. Hopefully science will figure this out and be able to make this happen!
Hi, if they find the gene responsible for one given form of EDS, what is the process of editing it out?
Also if MSM is a good supplement, then one could use a Tsp daily of high quality DMSO which is much stronger. My experience is a lifted mood. Thank you.
Hi Barbara! Unfortunately we do not yet know the exact gene that causes hEDS, and gene editing is not yet available for this condition. Glad to hear you are having positive results with DMSO!
I was always healthy and strong u til several doses of fluoroquinolones and metronidazole, I believe these antibiotics can cause or make EDS worse when a person didn’t have symptoms. These two antibiotics ruined my life and have caused so many other problems. Fluoroquinolones can mutate DNA and deplete collagen, amongst many other problems. Do you believe the damage these antibiotics cause can cause or give exact symptoms of EDS?
Hi Cindy! There is evidence that some classes of antibiotics can affect collagen, which we definitely do not want to happen. Some doctors are not aware of this side effect, unfortunately, and prescribe this class of antibiotics to our patient population, which can be harmful.
Hi Bonnie,
I have type III and pretty much managing my symptoms. Part of that is weight loss (I figure if my joints are carrying less weight, there’s less strain), however I’m having trouble with the usual baggy skin. Recommendations are to take collagen, but is there any point if my body is just going to mess it up? I have no expectations of it helping with joint stability or pain, would just need a hand with weight loss skin.
Thank you!
Hi Hayley!
Collagen is really similar to taking protein supplements. If a person does not have adequate protein intake, it can be helpful to take any protein supplement. Of course, it is always better to get from real food sources if possible, as food has other nutrients in it. Excess, baggy skin really would need a dermatologist or plastic surgeon consult to figure out solutions for.
Hi
My daughter is 16 years and we suspect she has EDS from the symptoms she has. Her dad has it too.
She suffers sometimes from increase heart beat and fatigue. Is that normal for patients with EDS?
She plays basketball since 5 years with no problem
Hi Nuha! Some people with EDS also have issues with autonomic dysfunction. This can include issues with heartbeat and fatigue. Definitely have a doctor check that out.
Hi Kim! I really would depend on the person’s individual clinical picture and symptoms, but EDS people tend to be low in B vitamins, Vitamin D, Iron/Ferritin, Vitamin C. Those are a good place to start with testing.