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Recently diagnosed with ehlers danlos syndrome

Posted By Michelle (Richmond, Va, Us) on 06/20/2011

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.

Replied by Debbie (Melbourne, Australia) on 06/20/2011

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.

http://www.scribd.com/doc/55772001/Klenner-KEY-to-Good-Health

MSM may also be helpful to you as well.

Replied by Michelle (Richmond, Va, Us) on 12/31/2011

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.

Replied by Gail (Melbourne, Victoria, Australia) on 12/31/2011

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

Replied by Dvercammen (Cottonwood, California, Usa) on 12/31/2011

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.

Replied by Eva (Amsterdam, Nl) on 01/09/2012

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!

Replied by Kath (Melbourne, Vic, Australia) on 01/22/2012

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

Replied by Michelle (Richmond, Va, Us) on 05/16/2012

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!

Replied by Chloe (San Antonio, Texas) on 11/16/2012

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

Replied by Angel (Beaumont, Tx) on 06/05/2013

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.

Replied by Janel0539 (San Francisco, Ca) on 06/27/2013

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.

Replied by Tom (Providence) on 08/12/2013

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.

Good luck!

Replied by Beth (Eldon, Ia) on 10/14/2013

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!

Replied by Dawn (Richmond, Va) on 07/15/2014

Hi Michelle. I have EDS and am also in Richmond. Just wanted to let you know that you're not alone locally.

PS There's a great support group based out of Chester on Facebook. A search for virginia or mid-atlantic eds would likely bring it up.

Replied by Elisabeth (Europe) on 08/08/2014

Michelle, I have hypermobile joints (when 15 already operated on knees), but I do not have ehlers-danlos. I was quite careful with my body, but my lower back started to hurt about 3 yrs ago (I wonder if perimenopausal changes triggered it ). For 2 years I have seen many drs and specialists, but it did not getter, only worse. In my case it turned out that about 4 weeks after I left sugar and milk products out of my diet my pain decreased by about 75% (I also do not eat processed food, nor meat). I now also take digestion enzymes and chinese herbs for lower body pain (containing rehmania, lycium chin, tangkuei, drynaria, dipsacus, tu huo, chin-chiu, siler, herba a, acanthopanax, loranthus, achyranthus, cinnamon, astragalus root, codonopsis, hoelen, baked licorice), and those help a lot too. I have about 3% of my previous pain now. It might be worth investigating if you have sensitivity/intolerance to certain food items...

Replied by Laura (Asheville, NC) on 08/11/2014

Elsebeth, I would not be surprised if the peri menopausal changes started your problems.

My daughter and I have Hypermobility Syndrome. I have Fibromyalgia also. My daughter was told she has Hypermobility Syndrome after years of pain, confusion, and doctor visits and of not being heard. I realized that I always had it but my daughter's condition is worse than mine was at her age. I think hers got much worse when she was of age for hormonal shifts to start. Mine got much worse and the so called Fibro started after a hysterectomy. I think the hormonal shifts definitely played a role in our conditions.

My understanding is that the Hypermobility Syndrome is like a lesser stage of Ehlers-Danlos but many of our symptoms are the same. If you don't mind my asking, have you been diagnosed with HS?

I too feel better when eating cleaner and leaving sugar alone. I have not completely cut out dairy but your testimony encourages me. My daughter and I have just started digestive enzymes. Can you share more about your chinese herbs? Is there one thing you take that has all the listed herbs combined?

I appreciate everyone sharing. It is so personal to lay this part of our lives out for the world to see. But your experiences and advice help so many especially in these conditions where we can feel so alone in our struggles.

Thank you all, Laura

Replied by Elisabeth (Europe) on 08/29/2014

Laura, I have not been diagnosed with Hypermobility Syndrome, but all the info (and tests) I read on the internet confirm it. I wish I knew it before, I have seen 5 physiotherapists and a manual therapist and three orthopeds in the past 3 years. They all made my problem worse, because they did not realize what I had either.

My very first MRI was quite normal looking, even if I had pain and could not sit, I got cortisone shots and was sent to physio to "strengthen" my back and it got worse. Then got cortisone shots again and was sent to another physio, and so on. Got even a sitting MRI, there was not much to see either, my lower discs were a little bit bulging and they said while sitting it probably pushed the nerve. At the end I got even a discoplasty, after that I got a fullblown hernia and they said I needed to be operated on, but probably after two years I needed plates because my discs got so thin.

That was the moment I started with no dairy, digestion enzymes and the chinese herbs; after 4 weeks I cancelled the operation 3 days before it was due. First I could not bend over to touch my thigh and in four weeks I could bend so far to touch my shin (now I can reach the ground, but not with my whole palms as in the past).

Before that I tried lots of other things, like glucosanine chondrotin, sms, hyaluronic acid, fluid silica, devils claw, shussler salts, bach remedies, ginger, special herbs body builders use to regenerate, etc etc you name it, they did not help. I am not sure my discs are better now (did not have an MRI again), but I do not have pain anymore and I am way less stiff. The chinese herbs I take are for sensifarm, but I read on internet that traditional chinese doctors make similar mixes and other herbal companies as well. I googled chinese herbs for hernia/discs/back and found a few and started to look for local companies that included those in their pills.

I would try to figure out what your body might not tolerate by leaving food items out of your diet for a while and see if you get better. I do eat soaked nuts, eggs, and some nightshades, but other people are allergic to that too. By the way, my knee problems also started when I started hormonal develeopment. I was about 11 yrs old and my problems are also worse than my mother's (she also has bad knees and back and in general problems with her joints).Hope this helps.

Replied by Saltier (Sf Bay Area, CA) on 10/01/2014

Hi Michelle,

I am 37 and struggling with these very same issues myself. At this point I have an Hypermobility Syndrome (HMS) diagnosis and Hashimoto's, but I've never been tested for Ehlers-Danlos Syndrome and I have almost all of the other symptoms: high Beighton score, borderline marfanoid body-type, autonomic problems (POTS, OH, flushing, peripheral neuropathy, headaches), easy bruising, prior dislocations/subluxations, IC, IBS, food and drug allergies, and severe life-long hormone problems. Right now I am trying to find a medical geneticist that can test me for ED so that I can get some decent, ergonomic work furniture when I get a job again. My doctor has also prescribed PT (which has been hit or miss in the past).

In terms of resources, I have found the UK's Hypermobility Syndrome Association to be a very helpful website. It has specific PT and occupational therapy tips for people with our joint issues. Yoga, on the other hand, has been a disaster. And while Pilates has helped the other ladies, I have seriously injured my hip doing a total beginner class-- so you may want to be very careful with that too.

Things that have worked for me have been-- ergonomic furniture at work (the jobs that have had it), frequent water/tea breaks, not working on my laptop in bed or on the couch (I was a poor student for years so this is a difficult one for me), changing my diet, and HRT.

I found out last year that I am intolerant of gluten and allergic to casein, egg whites, nightshades, oysters, carrageenan, and olives. Since I stopped eating these things and started eating mostly organic food I have been feeling 85% better and the nerve pain in my hands and feet are gone. And I notice an enormous difference when I slip up.

Also, I've noticed that when I started HRT I got much worse when they were just replacing my progesterone. When they started replacing my estrogen too I started feeling better than I had in years-- though I'm still struggling (cystic acne) to find the correct dosage as my body is becoming more and more able to make its own again. I think it is interesting that people have noted their problems started in puberty! Though I was born with deformed feet and lazy eyes, both of which were corrected overtime non-surgical medical intervention, my joint problems didn't begin until I hit puberty either. I got my period, hair, curves and grew 6 inches all at age 10.

Anyway, my current doctor recommended DMSO for pain, but the reading I've done this far makes it seem a bit scary. Has anyone tried this and if so, what was your regimen and result? What is MSM and where do I find that? Has anyone developed bone spurs in their hands around their knuckles? If so, what have you done for it?

Many thanks to anyone who replies and best wishes to all for finding effective treatment,

Replied by Prioris (Florida, USA) on 10/01/2014

I don't know much about your condition and don't know if it is right for you but I can say this about using DMSO.

There is always that fear of something new. Once you use it a couple times, you will realize it is nothing to get scared of. The longer you use it the more relaxed you become about using it. They say it will absorb everything like microbes into your body. Maybe but probably easier said than done. Microbes are more susceptible to being killed in the presence of DMSO so is a disinfectant.

The only caveats is that 99% strength will burn your skin a little if not diluted with water. Add at least 30% or more water. Experiment. Putting it on skin is no big deal either.

I used it at 99% strength in my mouth and let it sit there. What happened it caused the inside layer of my cheek to peel off a little. Live and learn. On my gums, it was fine.

I've taken it internally a little. It was no big deal. I don't normally use it that way. I would only take it on an empty stomach diluted with water. There is a warm weird feeling to the liquid in the mouth. Even warm when applying to skin.

The negative for MSM is that it causes migraines in some people. If I take too much, that is what will happen to me but many people do fine taking large amounts.

Of course there is the smell to DMSO. It's not a problem for me but it may be for other people. You just have to take the plunge.

Replied by Elisabeth (Europe) on 10/02/2014

Saltier,

I did try DMSO too, it did not do much for me personally (but others swore by it). I only tried it externally, it does dry out your skin and sting somewhat (at least mine skin), even diluted and in a mix with aloe. The smell is tolerable and only for a relatively short time.

Replied by Joan (Oregon, US) on 10/08/2014

I'm looking around to see if there is any new information out there. My favorite bodywork is CFT - Gillespie Approach. I am looking at how to use magnets to give the proper information to the body so it can go back to its original blueprint. I am a believer in Epigenetics, change the environment to change the organism.

Replied by Carlie (Ontario, CA) on 11/02/2014

I was also diagnosed with Ehlers-Danlos Syndrome. I'm only 22 and I've always had issues. It was never a serious problem until recently and was often beneficial because I did competitive gymnastics and other sports. My worst issue is with my hips and wrist. My physiotherapist did a series of exercises, acupuncture, and ultrasounds. The ultrasounds are beneficial if you suffer from bursitis (fluid filled sacs within the joints from dislocations). I had this done mainly on my hips and noticed a large difference.

The other beneficial activity was using exercise bands or simply body weight exercise that minimized flexion. I was told not to do yoga because that can increase the flexibility of the joints. Doing simple band exercises with the band arround both ankles or attached to a stationary object, while standing on one foot (or laying down if this is initally to hard). Hold your leg in a forward position for 10 sections using us much tension as comfortable. Repeat this holding leg out to the side, behind, and across the body for 10 seconds each and stry and repeat at least 3x, then switch legs. I did this 2-3 times daily for 8 weeks and saw a huge improvement in my hip dislocations.

Replied by Donna (Houston, Tx) on 11/06/2014

This reply is for "Saltier" from the Bay area...

My mom was able to rid herself of a bone spur on the toe by applying a Native American Nutritionals essential oil blend called "Breathe Ease". It's about $17 plus shipping, and should last a really long time. However, after she quit using the oil, the spur came back.

She also has had leg pain since she was 12, as well as hip joint pain for the past 15 or 20 years (she's 83), so she may have a mild version of Ehlers-Danlos Syndrome.

Replied by Susan (San Francisco, CA) on 11/07/2014

There is a youtube video with a woman named Barbara O'Neill and she gives demonstrations how to make various poultices and compresses. One is for a Castor Oil Compress (shows up at 41:47). She specifically mentions bone spurs (42:20) and says if you've had the spur 3 years it might take 3 months to break down, if you've had the spur 3 months it might take 3 weeks to break down. Then she goes on to show how to put it together. Good luck.

Replied by Christine (Philadelphia, PA) on 11/10/2014

I loved hearing about some Holistic treatments! Living a healthy life is the way to go with Ehlers-Danlos Syndrome!

I have also found a gluten free and dairy free diet to be extremely beneficial. It's not a cure, but it definitely helps with absorption of nutrients and quieting inflammation.

Many people on this page commented that yoga injured them. Personally, I have found yoga to be my best medicine. However, I'm talking about a very gentle, self-inquiring, meditative style. All too often people jump into a style that is not suitable for someone with EDS!

For those of you interested in actual healing, I would definitely not throw yoga out the window.

I run a yoga page on facebook and was just honored on Shape dot com. Yoga is definitely worth a look!

I don't know if I am allowed to link those pages here, but they are easy enough to google!

Take care!

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