plume

421d

Been doing some research into EDS-Hypermobile Type (EDS-HT), and found out it stems from a lack of collagen production in the body, which led to several discoveries: 1) has anyone had any success using collagen supplements? did some research into what /should/ work best, which is marine collagen with vitamin c and/or hyaluronic acid? most articles say that you'll see effects in 8 weeks, but does it actually help with joint pain? 2) Apparently pretty much every organ can prolapse/become displaced?? like typically with hypermobility, you won't see as many cardiovascular issues, but you can experience aortic dilation bc of the weakened muscle fibers, and like that freaked me out ngl 3) looked into what foods are good for collagen production, and funny enough they were all of my favorite foods growing up before I knew I had hypermobility? it was just kind of crazy how the body seems to know what it needs sometimes if anyone else wants to read the publication, it's at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5101008/

Hypermobility Syndromes

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    • DarcyD

      418d

      3) Despite what I said about point #1, I also believe intuitive eating is a great thing and it’s important to stay in tune with that. I’m just sharing what I’ve heard/read about the collagen supplements, but I also know that sometimes it takes science time to catch up to things our bodies have been telling us for centuries.

    • DarcyD

      418d

      Heya! Regarding point #1, from my understanding it’s different from a collagen deficiency, so taking supplements doesn’t help at all - otherwise it would be probably become a standard treatment or unofficial recommendation. I’ve seen the collagen supplements question asked in hEDS and HSD (hypermobility spectrum disorder) groups/communities before from time to time, but always answers that it’s not effective since it doesn’t address the root issues. I think it has more to do with how the collagen is produced and structured throughout the body (e.g. leading to hypermobile joints, joint instability and pain, and other connective issues throughout the body being more prone to prolapse and other issues).

    • DarcyD

      418d

      2) Yes! You should absolutely keep track of any heart related symptoms and talk to your doctor about it. If you have anything going on with your heart, your doctor may make a referral to a cardiologist. My rheumatologist detected that I still have a heart murmur from when I was a kid - and I have closely related family members with a heart murmur and/or vascular EDS. So I’m going to get it checked out and monitored, but I don’t have any major heart related symptoms that I’m aware of so it’s probably not a major issue for me at the moment. Never hurts to get things checked out though, and keep an eye on any signs of something being off!

    • DarcyD

      418d

      3) Despite what I said about point #1, I also believe intuitive eating is a great thing and it’s important to stay in tune with that. I’m just sharing what I’ve heard/read about the collagen supplements, but I also know that sometimes it takes science time to catch up to things our bodies have been telling us for centuries.

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