"Ehlers-Danlos syndrome (EDS) (also known as "Cutis hyperelastica") is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue - usually Type I and III)."
06/20/2011: Michelle from Richmond, Va, Us: "I have very recently been diagnosed with Ehlers Danlos Syndrome Type 3 (Hypermobility). It is a genetic collagen function deficiency that affects all connective tissue in the body. Both large and small joints are unstable, and certain joints (such as the shoulder, knee, and jaw) tend to dislocate frequently. Chronic joint and limb pain often begins early in life. My ankles, wrists and knees subluxate frequently and I've had my hip spontaneously dislocate - took 5 months to heal as I knew I was in pain but thought I had only pulled a muscle. My joints pop often and feel like they are wiggling around. Many joints dislocate. This chronic disease only gets worse over the years. I am 47 years old and have had these problems since I was 13, that I can remember. Over the last 2 years I have gotten worse but thought it was due to my weight and inactivity. Every time I would begin an exercise regimen I would injure myself, even when I thought I was doing something low-impact. Last fall I had about a month of extreme pain in my legs at night (and thought it was restless leg syndrome, weird, I thought), and back in February my back was excruciating and I was laid up for a week on heavy narcotic medicine that did little to relieve the pain). I hate taking meds for anything and usually rely on natural methods but this was so bad I was willing to put that stuff in my body. Depression inevitably followed. Bowel problems are also associated with this disease.
My question is, does anyone here have any thoughts or ideas regarding either:
1. Rebuilding collagen in the body? It may or may not work since how my body uses collagen is one of the issues.
2. Ways to gently strengthen muscles around connective tissue? I'm thinking yoga...
3. Other methods that might reduce the stress on my joints? My body will continue to deteriorate and I'm trying to avoid crutches or wheelchairs in my future.
Any thoughts are welcomed and hopeful. I did notice Ted had one mention of EDS in a post but it references his desire to find a cure. Currently there is not one. Thank you anyone and everyone for your help."Replies
06/20/2011: Debbie from Melbourne, Australia replies: "Michelle
Sorry to hear what ails you. If I were you, I would research Vitamin C for starters and Dr. Abram Hoffer. I would google "Vitamin C collagen" and sit and research like mad. Also google Dr. John Hoffer.
Here is an exerpt from the below link:
Vitamin C is important and necessary to the collagen, dentine, intercellular cement, the walls of the blood vessels, cartilage, callus andosteoid bone tissue. It is the basis of connective tissue.
MSM may also be helpful to you as well."
12/31/2011: Michelle from Richmond, Va, Us replies: "I thought I would check back in case there were any other thoughts related to my EDS post. I appreciate the link to Vit C. I have heard it mentioned before. Am having a particularly bad week as I've subluxated my ankles, wrist, fingers and knees several times. My wrist is still out of place and I can't get it back in place as yet. Lot of pain in the joints. This fall and winter have been bad for some reason. Just hoping to generate another look from someone to my post by keeping it alive.
Since there is no cure for this genetic disorder, I am only hoping for disease management so I do not progress further. I fear that is what's happening now. Thank you for reading... Hopefully someone might have some suggestions."
12/31/2011: Gail from Melbourne, Victoria, Australia replies: "Hi Michelle, Have a look into DMSO, a good book is DMSO natures healer by DR Morton Walker. I would also consider MSM & gelatine also hyaluronic acid ( this one is expensive). I am about to try DMSO myself, my problem is spinal stenosis, herniated discs, & much more. I have tried HA, which seemed to make an improvement but found it too expensive on a pension. I am now about to order the DMSO with Aloe vera gel & see if that helps. Good luck"
12/31/2011: Dvercammen from Cottonwood, California, Usa replies: "Have you done any research on vitamin D3? Long term deficiency causes so many diseases and conditions to develop. You will need 5O,OOO per day along with calcium and magnesium and Vitamin C with a good multi-vitamin with all other nutrients. D needs many vitamins and minerals to raise the levels. Dr. Michael Holick at Boston U wrote the Vitamin D solution which is packed with diseases believed to develop from chronic D deficiency. The Vitamin D Council offers good advice too. We live in society where doctors give drugs to mask yours symptoms and you get worse and need more drugs to mask those symptoms.
I believe the answers are supplements and herbs and Cider Vinegar with honey.... You can find a lot of information if you start researching on the internet. The _____s book is excellent with a number of health problems listed. I hope you feel better soon. I, of course, am only a researcher for myself and friends and family and pets but I have been studying for many years and feel I have more information than most doctors that don't keep up on the latest information. Many studies will try to persuade you to take drugs not improve your health through diet and supplements. Don't be fooled they are slanted and want you to buy drugs and stay sick. Pharmaceuticals are big business... Billions maybe trillions a year."
01/09/2012: Eva from Amsterdam, Nl replies: "Michelle, I am not sure about your insurance, but prolo-therapy seems to help quite some people and it is allowed in the US. There is a hypermobility forum (search on google), where you could find some more info on different issues. Besides the nutrients mentioned in earlier posts, I take Schuessler salts nr 1 and 12. I can't say for sure if they are helping me (after 2 months), but everybody is different... Wish you lots of strength!"
01/22/2012: Kath from Melbourne, Vic, Australia replies: "Hello. In my personal experience yoga actually encouraged hypermobility and extension of my joints although the teacher thought I was her star pupil! Don't even give bikram yoga a 2nd thought! I strongly encourage clinical pilates with an experienced instructor. I am working on building muscles around joints to stop hyperextending at knees and elbows. Also I have trained to walk differently to reduce impact of flat feet. In just 3 months my back pain has reduced significantly since being taught how to stand without hyperextending my knees and exaggerating the curve of my lumbar spine. Other benefits are feeling more relaxed in the studio environment (very nurturing), in control of my condition and greater muscle tone - my bum is looking it's best ever!!! You need to go 2-3 times a week to expect fast results. I can't imagine where I'd be without my pilates now. It's not cheap at $38 a pop but after years of tearing my hair out looking for relief I think it's the best money I've ever spent compared to physio, chiro, remedial massages and all the other med costs associated with the condition. Hope you find something that works for you. Kath"
05/16/2012: Michelle from Richmond, Va, Us replies: "Hello Kath - I never started the yoga because I thought the same thing might happen with my joints too, the stretching feels good but I was worried about over doing it and making things worse. I had not considered pilates at all - I think that might be a good thing for me. I will look into it. I have been re-training how I walk and move in general as well. Even something as small as I how I lift a coffee pot (or even how I push buttons on an elevator) has improved my muscles around my joints and the number of dislocations has dramatically decreased. The cold weather is bad on me so now I make sure I'm always dressed warmly, it helps. It amazes me how these little things make a huge difference.
I will post back once I find a pilates class and begin. If these bits of information help anyone, it'll be great.
As for the ACV - I take this daily anyway. Ehlers Danlos is not a contracted condition, it is inherited so the ACV is for my general health, not my condition. I don't take the pain meds the doctor prescribed as I don't want that stuff in my system. Side effects will kill you before the disease will. I stay organic.
Thanks everyone for your thoughts. I will look further into the other recommendations - I won't know until I try!"
11/16/2012: Chloe from San Antonio, Texas replies: "Michelle & Kath - Yes I agree with staying away from yoga. I took a yoga class in college (before being diagnosed but already having had multiple shoulder surgeries) and ended up dislocating my left shoulder and undoing the the repairs from a surgery. I had to have a 2nd surgery on my left shoulder. Pilates is great though! So go for it. I've been wanting to return to pilates myself, just haven't had time or the money. I've just started researching natural supplements to help with the chronic pain, so the previous posts have been helpful.
I'm going to see rhuematologist for the first time in few weeks. Any suggestions on specific questions to ask, or what to request treatment wise? Its just hard because so far I have not found anyone who has tons of experience with EDS. I had one physician say they would have me go see a specialist in Maryland. I'm in Texas, I can't afford to travel like that. Just frustrating. My daughter has been diagnosed, so i'm trying to prepare myself so I can help her if the syndrome progresses with her.
Good luck! ~ Chloe"
06/05/2013: Angel from Beaumont, Tx replies: "I am so sorry. I know that what is impossible with man is possible with God. Jesus still heals. He did it in the past, he is still doing it now. I pray for your healing in Jesus name, Amen."
06/27/2013: Janel0539 from San Francisco, Ca replies: "Consider bone marrow broth, also known as "bone broth." There are a number of good articles and recipes online. Good for immune health and collagen building."
08/12/2013: Tom from Providence replies: "Yup, I Diagnosed with this condition after struggling most of my life with pain and joint issues. There's not anything that's really gonna cure this condition, it's a genetic issue and beyond the scope of science right now. That said, for joints you gotta bring stability to them so doing Physical Therapy with a therapist familiar with this condition will help with that. It's basically learning to move without hyper-extending the joints, which can damage them.
For pain, I do Myofascial Release with a foam roller. This is a massage for the connective tissue and I find it to be very helpful when pain flares up, I started doing it two years ago even before I knew about this condition, and I really like it because you control the intensity and duration, and it's relatively cheap.
Suppleements can help, I haven't seen to much help from C or D but I like MSM, a high dose of about 4000mgs a day, which seems to lessen pain slightly, but enough to make a difference. You can try Collagen Hydrosylate, which I am just starting to try. I also take Suma which helps with fatigue and energy. Try not to get too lost in Alternative Medicine too much, it can be very expensive and it can help but it won't cure the problem and most supplements are just crap.
10/14/2013: Beth from Eldon, Ia replies: "Hi, Michelle. I am with you on the desire for natural remedies as opposed to pharmaceutical treatment. I am a 45 y/o woman recently diagnosed with EDS Type 3, too. I have found that Curcumin Complex works really well for reducing inflammation and, therefore, pain. Triphala supplement, an Ayurvedic treatment, delivers both Vitamin C and IBS relief. The first 2-3 weeks may leave you with looser stools, but after that it evens out. I also found that googleing nutritional supplementation and Ehlers-Danlos Syndrome and looking at the results was very helpful. My best to you!"