3

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Ehlers-Danlos Syndrome

Answered on August 27, 2016
Created May 29, 2012 at 3:53 AM

My wife has had health problems her whole life. Her grandmother and mother were diagnosed with Rheumatoid Arthritis, so she thought she had the same. Over the last year she has gotten progressively worse, so she went to see a rheumatologist. He thinks she has Ehlers-Danlos Syndrome, a genetic disorder that disrupts the body's ability to process collagen. It is fairly rare, but you may have seen it as the people in the freak show with super elastic skin, but it explains all of the odd health issues she has had. I am certain that Paleo would at least slow the progression, if not reverse it. Has anyone had success in reversing a similar illness?

1568416ef28477d1fa29046218d83ddd

(6235)

on August 05, 2014
at 08:08 PM

I can't find this, but if you ever wrote it I want to read it very much.

Bc51ed51f8942bed55611c0d8140c9e8

(35)

on January 05, 2013
at 03:33 PM

oops i meant low carb obviously lol

A3bb2c70384b0664a933b45739bac32c

(951)

on December 26, 2012
at 03:49 AM

Better late than never. Thanks!

A3bb2c70384b0664a933b45739bac32c

(951)

on August 09, 2012
at 03:37 PM

Look up the Ehlers Danlos National Foundation on Facebook, we have gotten some good info from them. Also a good pain management or integrative health clinic who has experience with EDS will help.

8508fec4bae4a580d1e1b807058fee8e

(6259)

on July 10, 2012
at 08:23 PM

Celiac, Crohn's, Diabetes, Cancer, etc. can be genetic diseases - yet I have seen remissions of those and more with nutrition, supplementation, and lifestyle intervention!

21fd060d0796fdb8a4a990441e08eae7

(24543)

on June 05, 2012
at 10:24 PM

Have you seen the episode of House in which the final diagnosis is Ehlers Danlos? It was pretty neat, but also kinda dumb and implausible how he got to the diagnosis.

8496289baf18c2d3e210740614dc9082

(1867)

on June 05, 2012
at 02:56 PM

Eating a lot of bone broth certainly isn't going to hurt, and the fats and connective tissues she'd be consuming may help. I hope you get some clearer answers.

A3bb2c70384b0664a933b45739bac32c

(951)

on June 04, 2012
at 07:52 PM

If you read my original statement I said I expect it to slow the progression. Though I distrust conventional med, and with good reason, I realize that it is unavoidable. Even traditional medicine practitioners try to work with your physician to provide full support.

A3bb2c70384b0664a933b45739bac32c

(951)

on June 04, 2012
at 07:49 PM

Thanks. She has genetic testing scheduled to find out which type. I don't really expect it to fix everything, but I know when I started Paleo and she was eating like i was she felt better. She does have some bruising and healing issues, poor immune system joint problems and her eye burst at 6 months old, we are now thinking that it was not due to glaucoma.

9c4ba98a3b480408bcf207f558fe659b

(355)

on May 29, 2012
at 04:38 PM

Really great advice

  • A3bb2c70384b0664a933b45739bac32c

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12 Answers

6
21fd060d0796fdb8a4a990441e08eae7

(24543)

on June 05, 2012
at 10:22 PM

I have Ehlers-Danlos, hypermobility type.

Has paleo helped? Hells no!

But I get a kick out of reading about muscles, the nervous system, pain, and so forth. And my job involves reviewing clinical trials. So I have a laundry list of ideas on how to address the pain aspect of EDS, sitting in various emails I've sent to myself over the years. At some point I'll get to writing about most of them on my website, but there's so darn much to cover.

What might possibly help EDS? Well...nothing is a slam dunk, since you can't go in there and replace all your collagen. But things such as prolotherapy can address site-specific problems, and certain postural exercises (think: Esther Gokhale) coupled with very good PT (think: KStarr) can also help relieve symptoms.

Lastly, having an "invisible" condition pretty much sucks with regards to getting any sympathy whatsoever. So having a friend or two with a pain condition is super helpful.

1568416ef28477d1fa29046218d83ddd

(6235)

on August 05, 2014
at 08:08 PM

I can't find this, but if you ever wrote it I want to read it very much.

4
39311794c054f89a226f33e1afd08721

on December 23, 2012
at 04:07 PM

I have EDS and I do believe diet changes have helped me. Mainly, the switch to gluten-free has helped. My joint pain nearly disappeared in days and I was able to sleep without strategizing how to spread the pain out the best.

Over the past decade, I've been acutely aware that this illness does progress. I've watched my finger joints get so loose, pushing buttons is a bet whether the button will get pushed or my finger will collapse. Suddenly, that's improving and I'm actively doing more instead of constantly strategizing to do normal tasks. I held grocery bags like a normal person the other day. I just clinched the handles and carried them instead of hanging them from my wrists or rushing the carrying while trying not to think how far my joints were separating. That's so huge to have my anxiety about how much worse I'll get a bit relieved.

There are some other things I'm trying to address with paleo. I don't know whether to blame them on EDS, but becoming more sedentary and autonomic nervous system changes arguably can be blamed on EDS and I'll fight it with everything I can think of, paleo being an option.

EDS is a complex autoimmune disease and though genetic, it does progress as injuries accumulate and the immune system goes batty. I'd describe it as the collagen defects driving the immune system to distraction and sometimes insanity. I've watched my family members develop more complex autoimmune diseases that involve the immune system attacking other tissues than just the defective collagen, to the point of fighting for their lives and, in one case, losing the fight when what was attacked was the muscles needed for breathing. I can't prove a statistical relationship between EDS and developing these other conditions, but considering the extreme rarity of those conditions and that three EDS-positive members of my family have developed similar ones, I'm properly shaken up.

I've found answers to my questions about how not to taunt my immune system on this site. I'm not dismissing what I've found on this site as not relevant to this condition so easily. Perhaps I'm a little too emotionally affected, having seen things that make me mortally afraid of my own immune system, but I'm solidly convinced that pursuing anything that keeps my immune system settled down is wise.

4
9c4ba98a3b480408bcf207f558fe659b

(355)

on May 29, 2012
at 08:17 AM

I am sorry to hear this.

While adopting a whole foods diet and avoiding processed/refined foods is a positive step it is not a cure for a genetic disease.

Conventional medicine (gasp!) is your only hope.

A3bb2c70384b0664a933b45739bac32c

(951)

on June 04, 2012
at 07:52 PM

If you read my original statement I said I expect it to slow the progression. Though I distrust conventional med, and with good reason, I realize that it is unavoidable. Even traditional medicine practitioners try to work with your physician to provide full support.

8508fec4bae4a580d1e1b807058fee8e

(6259)

on July 10, 2012
at 08:23 PM

Celiac, Crohn's, Diabetes, Cancer, etc. can be genetic diseases - yet I have seen remissions of those and more with nutrition, supplementation, and lifestyle intervention!

3
7e6644836cdbcbe2b06307ff7db92d31

(693)

on May 29, 2012
at 01:06 PM

As Alec mentioned, diet will generally not provide a solution. Best thing to do is educate yourself, and resources are usually available in the form of Foundations/Support Groups.

Generally these groups are comprised of truly wonderful people and serve a variety of functions;

  • they provide a wealth of scientific information that will provide a much better return of your time than huntng around PubMed, at least initially

  • they introduce you to actual individuals who can directly relay experiences with pursuing treatments and negotiating daily life etc

  • they generally are active in fund raising, often both for research and direct family support, sometimes even for things like advocacy on Capitol Hill

As an aside, in terms of research funding, which can generally be divided into Public (NIH via taxes), private (Companies), and charitable (Foundations/Support Groups), genetic diseases are often a victim of the numbers game - sometimes there are simply not enough patients to attract a lot of funding.

Within the current budgetary climate, the prospects at NIH are uncertain, which makes the role of Foundations/Support groups ever more important.

9c4ba98a3b480408bcf207f558fe659b

(355)

on May 29, 2012
at 04:38 PM

Really great advice

2
Bc51ed51f8942bed55611c0d8140c9e8

on December 25, 2012
at 03:17 PM

(sorry i know im super late to this)

i have eds.

going to the doctors has helped me ZERO, unless you have a herniated disc or something. they will only rx pain meds.

avoiding processed foods and eating a low carb diet helped stabilize my blood sugar which in turn helped with my eds. having regular bowel movements is KEY and hard for an edser

taking loads of magnesium helped.

i have ordered my own bloodwork and then i take it to the doctor if its abnormal, rather than going to them begging for tests like RBC magnesium etc.

your wife could look into hormones, supplementation is a bit risky, and i myself dont do it but ive heard it helps other people

whats helped me is physical therapy. i swear by it. if she finds a GOOD high quality physical therapist (these were not in network for me), they are worth their weight in gold.

A3bb2c70384b0664a933b45739bac32c

(951)

on December 26, 2012
at 03:49 AM

Better late than never. Thanks!

Bc51ed51f8942bed55611c0d8140c9e8

(35)

on January 05, 2013
at 03:33 PM

oops i meant low carb obviously lol

2
59eb750a125e920d12e7895582c6abfb

on December 23, 2012
at 06:42 PM

I have EDS and I've never met my one else who has it. Will diet help? No, not really. Not when it come to the hyper mobility. What I hear helps is weight training to help stabilize the joints. All I know is its rare and not much is known about it. I was diagnosed with EDS 10 years ago. I'm lucky, the joint pain went away on its own. I still dislocate everything, however.

2
C9dc15a6ffb4546f081d215d66302e83

on June 05, 2012
at 09:26 PM

My wife thought she had IBS, in part because her mother has Ehlers-Danlos. I bet her Paleo Diet would clean that up , and after 4 weeks it did. Her Mother has more of E-D symptoms, but also, to my eye, has a flock of autoimmune issues that diet would correct. So while Diet might not affect E-D directly, it is possible that some of the symptoms a person has may be caused by more mundane causes.

2
8496289baf18c2d3e210740614dc9082

on May 29, 2012
at 03:39 PM

There are six different types of Ehlers-Danlos, depending upon which type of collagen is faulty: if you know what sort of collagen her body has difficulty synthesizing, you will be able to do a much better job ameliorating symptomatology with diet (though medical management is unavoidable, really).

While this can only definitively be determined with genetic testing, it's relatively easy to get an accurate picture clinically based upon symptoms. What are her issues?

Briefly, Type 3 collagen is most commonly affected, with symptoms like easy bruising, intestinal issues, and poor wound healing on top of the joint hypermobility and skin hyperextensibility.

It sounds like she has the skin stretchiness. This indicates a strong likelihood of Type 1 collagen involvement. If it's stretchy but also thin and fragile, possibly Type 5 collagen as well.

Most folks have the joint hypermobility (most common manifestation), which is Types 3 and 1.

Good luck, and I hope this helps.

A3bb2c70384b0664a933b45739bac32c

(951)

on June 04, 2012
at 07:49 PM

Thanks. She has genetic testing scheduled to find out which type. I don't really expect it to fix everything, but I know when I started Paleo and she was eating like i was she felt better. She does have some bruising and healing issues, poor immune system joint problems and her eye burst at 6 months old, we are now thinking that it was not due to glaucoma.

8496289baf18c2d3e210740614dc9082

(1867)

on June 05, 2012
at 02:56 PM

Eating a lot of bone broth certainly isn't going to hurt, and the fats and connective tissues she'd be consuming may help. I hope you get some clearer answers.

1
39311794c054f89a226f33e1afd08721

on December 23, 2012
at 09:56 PM

Michelle, look more closely at your own family and you might find more with EDS. It gets passed down along a dominate gene and you should be able to draw a straight line up your ancestry for EDS-positive people, then there would be a 50% occurrence for all offspring from there. So much of why we didn't realize anything was wrong in my family is the occurrence was so strong, we thought abnormal things were normal and that everyone struggles and it's stoicism that varies.

0
C5767a3c26370b483770d9ff4c74c44c

on August 27, 2016
at 04:13 PM

I read this question a few months ago in a search for a higher quality of life for myself.  I wanted to wait to give Paleo a chance.  Does Paleo help EDS.... Aboslutlely YES in my case.  EDS comes with a plethora of other comorbid problems like IBS and fibromyalgia (of which I have both).  It also comes with food intolerances, skin problems, allergies and a whole bunch of other things that Paleo does help.  Furthermore, the research I read on connective tissue disorders and food additives, perservatives, and GMOs suggest that these foods affect connectiv tissue in a negative way (google EDS and nutrition and/or diet to find the research).  Personally, before Paleo, I was in so much pain that I was struggling to work (I am a special education teacher).  I was also so tired that to be actively engaged in my life became a struggle.  My amazing family was so supportive and took me into consideration for every planned event.  However, after 4 months on Paleo, I have stopped taking all pain meds, muscle relaxers, eliminated one sleep med, lyrica, and stopped taking prilosec.  I have more energy than I have had in years.  I will also say that I added turmeric, vit E, flaxseed oil, and SAM-E to my vit C, magnesium, and multi-vitamin (but be careful, add them in one at a time.  I had terrible gastric problems because I added them in too fast).  I have also lost 12lbs.  I can now exercise more and I sleep better.  A warning though.  It is hard to live this way.  I started with Paleo Auto-immune protocol for 6 weeks.  I was traveling during this time and had to spend a lot of time preparing my food ahead of time and being very choosey where I ate.  It really does take at least 6 weeks to get your body  back in order from all of the crap we put in it.  After the first 6 weeks, I started adding things one at a time (if you google how to do this you will find some cool ideas that may help you.  Plus I have become a pinterest junky)  What I have discovered is a long list of "healthy" foods that were not so healthy for me.  I now know that I am lactose and gluten intolerant, that melons make my throat itch, certain chocolates give me migrains, and canned legumes tear up my digestive system. I think that the weirdest thing I discovered is that oatmeal gives me headaches.  I pretty much ate oatmeal every morning and used to wonder why I had such bad headaches on my way to work...now I know.  I now live Paleo 99% of the time however I have discovered that people are very supportive of it.  I went to my brothers wedding last week and the chef prepared a meal just for me.  I went to our county fair last night and found a fair food stand that served Elk.  I spoke to the guy running the stand about their elk and discovered that I could eat it!  How fun!  Many people may say that it is expensive to live the Paleo lifestyle but I discovered that it isn't.   I am saving about $200/ month in prescription (thank you that I don't have to pay for lyrica anymore).  Since I have eliminated two whole food groups (grains and dairy) my groceries are not as much.  I buy online, make my own coconut milk, buy eggs from a friend, found a honey provider locally, and grow and can my own food.  It is definitely a commitment of time but I figure that I am worth it.  I am 54 years old and want to be hiking mountains well into my 70s.  Paleo has given me hope that I can actually achieve that.   Also, I had an aunt die from the destruction of her liver because of meds from a chronic illenss.  Meds may give you immediate relief but they all take a toll on your body.  I do every thing I can wholistically before taking a med.  I hope that this has helped someone...

0
8b4c46f41aa5a602216c900a8e60d023

on January 09, 2015
at 02:10 AM

I have found a Ketogenic diet to make a remarkable difference to my EDS Hypermobility. It has reduced the inflammation and laxity. I also did a course of Probio 7 probiotics and began taking zinc, magnesium, vitamin b multi, and vitamin c. L-carnatine I added later reduced the fatigue right down to very little. I have been able to begin exercising 2 months after I began this. I do body building upper body with lots of reps on low weight so not to strain anything. Having done that for 2 months I was able to do core/Pilates/yoga exercise. I also do up to 40 exercise bike. My hips, lower back, shoulder and neck are the main problem and they are all beginning to hold together more now. 

I would recommend giving it a try. I go to a chiropractor regularly as well. She noticed the response to her treatment was immediately improved after I started the Ketogenic diet and that was only after 5 days on it. 

Whenever I have stopped eating keto foods my Hypermobility goes a hell of a lot worse. 

 

Hormone cycles make Hypermobility variate also. Macca powder is good for regulating hormones I find. Especially PMS. 

 

Keeping a a regular sleep pattern and not being stressed keeps it under control too. 

 

Ive rearranged my life around it but at least it's managable now. 

0
Dd3abd21be3cddc814dbb0a0b67527c6

on August 08, 2012
at 10:56 PM

i was diagnosed last year and really get no answers from drs whatso ever..im thinking making anabolic steroids ?? hgh idk what to do and are at a loss its like im diagnosed with this type 3 and have no answers for help with it just pain meds..im only 33 there has to be something else

A3bb2c70384b0664a933b45739bac32c

(951)

on August 09, 2012
at 03:37 PM

Look up the Ehlers Danlos National Foundation on Facebook, we have gotten some good info from them. Also a good pain management or integrative health clinic who has experience with EDS will help.

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