Has anyone been diagnosed with Ehler’s-Danslo Syndrome (EDS)?

@sue15
Im 59 & was diagnosed with hypermobile Ehlers Danlos by a rheumatologist.

It’s important to share why type of Ehlers Danlos you have. Classical? Hypermobile type? Vascular?

If hypermobile type, the best place to start is a physical therapist trained/experienced to address hypermobility (I’ve gotten injured in physical therapy by one who didn’t have knowledge/experience).
The second thing is to listen to the Bendy Bodies podcast as there are interviews with specialists.

If you have a different subtype, I would recommend looking at the Ehlers Danlos website for potential resources and finding a FaceBook group to see what they recommend. But you’ll also want to consider the advice as “data points”. Sometimes people have great intentions but may recommend something that’s counterproductive

@sue15 one additional thought, my back pain is helped some by medical grade red light therapy. Everyone is different and this pain, while it’s caused by my degenerating spine, the pain is mostly muscular. Having said that, the red light has helped some with my hands & the joint pain, but as red light is supposed to be more effective for muscle pain as I understand it, perhaps the positive effects are placebo effect. But I’m not going to question it..haha!

@andieg yes, good point re type of EDS. I have Hypermobile. I’ll check the podcast out. Thank you so much for the advice. What kind of symptoms have you had/have?

@andieg I have a friend who had good luck with red light therapy-I’ll look into it.

@sue15 my symptoms have increased quite a bit in my 50’s. My symptoms began when I was a baby (I was diagnosed in my early 50’s, but I now recognize things my mom told me, and I see in pictures, as hEDS & hEDS comorbidities).
As a baby- skipping the crawling stage, “slumped” posture compared to 2 of my siblings, allergic reactions such as blisters while wearing diapers, etc. as a kid the stereotypical - constantly bruised and “clumsy”, trouble holding a pencil and bendy fingers & wrists and various subluxations, and what doctors called “growing pains” ( luckily one doctor diagnosed the Osgood Schlatters that was particularly painful). Also ADHD symptoms that went “under the radar” until my 40’s because I worked twice as hard as everybody else to keep up. As a teen through my 40’s I was in physical therapy regularly and had knee dislocations and sublaxing of many joints, a couple of broken bones, many different sprains, constantly “rolling” my ankle, crowded mouth/too many teeth, neck felt like it sprained while sleeping occasionally and had to physically lift/move it in the morning with my hands (it hurt for days and couldn’t move it but an inch for about 1-3 days), etc etc. After 50, thanks in part to diminishing estrogen, I got stiffer (our thicker fascia) but my joints got looser, so now my hips, spine and neck sublax which causes pre-syncope and scares me 😟 The back sublaxing feels like my back breaks off which is the freakiest one of my symptoms. I thought the hip sublaxing was scary until I experienced the back and neck. But my hypermobile PT is my savior along with an Accupuncturist who works with many hypermobile people. Honestly, they are wayyy more helpful than many of the doctors who do not have an understanding.. for example, if you tell a doctor who doesn’t understand hypermobility you dislocated your knee, he may send you for an xray. Then tell you you are fine. Thats because X-rays don’t detect soft tissue damage. However, when I tell my hypermobile PT that my back is spasming, she gives me exercises that help (when I feel like I can’t even move! She is a miracle worker 😊 But also, I’ve learned many of us hEDS have to make PT a part of our lives, it’s not something to do for three weeks and stop situation if we want to stay mobile and reduce pain).

First, thank you for sharing so much info. I am learning from you. My brother & son have the small indentation in their chest. As I think about it, I was a gymnast in high school and part of college. My back was super arched and my arms are long and very flexible. My hEDS was just diagnosed about 3 months ago. I twisted my ankle twice and went down on the second. I also experienced a morning when I couldn’t get my head up off the pillow due to stiff neck. Have you had any joint replacements? I have 2 knee and one shoulder replacement. One knee was expected due to skiing accident at age 20. I listened to one Bendy Bodies podcast-very good. I agree on the pt as a life commitment. You have been through a lot. I’ve been told there is no genetic test to diagnose EDS. My husband discovered it by reading about it. No doctor mentioned it or the collagen deficiency. I am on meds and recently started Naltrexone which helps a lot with pain. Do you need meds? It’s so true that after 60 everything does downhill. I do have gratitude for many things like my husband, family, out of state🙄, and good friends, my little dog. And now I have you to talk to😉. Have a great day! I might try acupuncture. I know how it feels to be scared about a part of the body-it’s so distressing.

Thanks for sharing. I do not have EDS but do have Slipping Rib Syndrome and am on the low end of the hyper mobile scale. The PTs I have seen have actually made my situation worse. I’ll keep looking, I would love to have a similar relationship with a PT and acupuncturist that I could work with. Best to you!

@sue15 There are numerous subvariants of EDS. Our son has hypermobile EDS and was diagnosed at puberty when we noticed that he has pectus excavatum. There is a genetic test but does not determine the hypermobile variant. There is a laboratory at MUSC in Charleston that is searching for that particular gene (some of the researchers have EDS themselves). Our son had the genetic test. And of course did not show the hypermobile variety as that gene has not yet been found. His diagnosis was based on the Beighton score when the doctor wanted to rule out Marfans. He had 2 shoulder dislocations as a toddler and preschooler but the pediatrician didn't diagnose EDS. I now wonder if I have it due to all of the issues I have had since I was a child as my siblings did not have similar issues. Some of my issues are similar to yours but I was diagnosed with a variety of issues by rheumatologists. I just think that physicians weren't that aware of EDS back in the 60's and 70's. I wish you the best.

Thank you for sharing your personal story💕.

Hi @sue15
I am 37 years old, and I have L-HSD, the localized phenotype for one of the gene negative EDS syndromes. If you want to narrow down the type you have with a test, the Invitae 92 genes connective tissues panel will test for 13 of the 14 EDS subtypes. If that test comes back negative (as mine did), then you could still have one of the gene negative ones (hEDS and HSD).
With EDS, everyone has such a weird variety of problems across a spectrum, so when you find something that works, you just gotta do that. That’s great that Naltrexone works for you, I had a similar experience with Celebrex. It wasn’t a permanent solution for my back pain though, as the gut lining is very weak in a lot of EDS patients, and Celebrex led to gastritis. Something that helped me a lot was getting whole genome sequencing gut testing. I found a few pathogens and went on a gut protocol to cleanse and repair the gut micro biome. I can recommend the test if you like. It obviously won’t solve the EDS problem, but it can help with some of the symptoms and flaring.
My issues with EDS personally, are wrist, pain, low back pain, and fatigue.

Jack