Anyone here living with Ehler's Danlos syndrome?

D

dobermom21

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I'd really like to link up with people who also have this condition, and swap stories about the things that worked for you - plus the ones that didn't.

Mine is the hypermobility type, and finding a doctor who even knows about it is uncommon.
 
I'm in the same boat ✋

Since dropping 20 lbs while on Reta, my joints have gotten noticeably more achy (that wasn't the case before lol). Picked up glucosamine and fish oil just yesterday, hoping they'll make a difference.
 
dobermom21 said:

I'd really like to link up with people who also have this condition, and swap stories about the things that worked for you - plus the ones that didn't.

Mine is the hypermobility type, and finding a doctor who even knows about it is uncommon.
Click to expand...
I've created a fresh post in the public square covering this subject, for those who want a peptide/EDS community.

A place for resources and conversation about peptides and Ehler's Danlos syndrome. /

Also, here's a newly set up Discord server for that same reason. https://discord.gg/49X7t9HGq
 
dobermom21 said:

dobermom21 said:

I'd really like to link up with people who also have this condition, and swap stories about the things that worked for you - plus the ones that didn't.

Mine is the hypermobility type, and finding a doctor who even knows about it is uncommon.
Click to expand...
I've created a fresh post in the public square covering this subject, for those who want a peptide/EDS community.

A place for resources and conversation about peptides and Ehler's Danlos syndrome. /

Also, here's a newly set up Discord server for that same reason. https://discord.gg/49X7t9HGq
Click to expand...
I haven't gotten an official diagnosis, though I do have the markers - pretty sure it's hEDS. I'd really like to follow along with you and be part of this journey! There was a stretch where my ribs kept slipping out (9 times within 1 year). Back then I was thin, and I actually put the blame on my weight, so I made a deliberate effort to put on pounds. Then menopause came along and the weight just kept piling on. At this point, I'm trying to lose carefully while also working on strengthening the connective tissues throughout my body. I could really use some guidance! There's so much I still need to learn 🙂
 
bamagirl26 said:

dobermom21 said:

dobermom21 said:

I'd really like to link up with people who also have this condition, and swap stories about the things that worked for you - plus the ones that didn't.

Mine is the hypermobility type, and finding a doctor who even knows about it is uncommon.
Click to expand...
I've created a fresh post in the public square covering this subject, for those who want a peptide/EDS community.

A place for resources and conversation about peptides and Ehler's Danlos syndrome. /

Also, here's a newly set up Discord server for that same reason. https://discord.gg/49X7t9HGq
Click to expand...
I haven't gotten an official diagnosis, though I do have the markers - pretty sure it's hEDS. I'd really like to follow along with you and be part of this journey! There was a stretch where my ribs kept slipping out (9 times within 1 year). Back then I was thin, and I actually put the blame on my weight, so I made a deliberate effort to put on pounds. Then menopause came along and the weight just kept piling on. At this point, I'm trying to lose carefully while also working on strengthening the connective tissues throughout my body. I could really use some guidance! There's so much I still need to learn 🙂
Click to expand...

I'll reach out to you as soon as I work out the messaging feature.
 
Yes, same here. Staying hydrated, getting enough sleep, building muscle, and dropping fat have all helped me keep it under control, and those are the things that pay off quickest. Doing Pilates for several years genuinely transformed my career when I was in a physically demanding job. The gains came gradually, but I haven't found anything else that safeguards my joints as well.
 
bamagirl26 said:

dobermom21 said:

dobermom21 said:

I'd really like to link up with people who also have this condition, and swap stories about the things that worked for you - plus the ones that didn't.

Mine is the hypermobility type, and finding a doctor who even knows about it is uncommon.
Click to expand...
I've created a fresh post in the public square covering this subject, for those who want a peptide/EDS community.

A place for resources and conversation about peptides and Ehler's Danlos syndrome. /

Also, here's a newly set up Discord server for that same reason. https://discord.gg/49X7t9HGq
Click to expand...
I haven't gotten an official diagnosis, though I do have the markers - pretty sure it's hEDS. I'd really like to follow along with you and be part of this journey! There was a stretch where my ribs kept slipping out (9 times within 1 year). Back then I was thin, and I actually put the blame on my weight, so I made a deliberate effort to put on pounds. Then menopause came along and the weight just kept piling on. At this point, I'm trying to lose carefully while also working on strengthening the connective tissues throughout my body. I could really use some guidance! There's so much I still need to learn 🙂
Click to expand...
Seems like there's no way to send private messages on this platform. Or am I just missing something? 🫤
 
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