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?
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.
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.
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.
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.
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.
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.
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.
(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.
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.
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
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