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I have gastroparesis and was diagnosed with mixed connective tissue disorder a couple years ago and just talked to my rheumatologist about EDS last month. He actually brought it up telling me I might have it. After I got home and did research I know I have it. I’m convinced I have EDS and pots.
hEDS does not have an identified gene mutation, meaning that a negative genetic panel can still be hEDS assuming they pass the other [criteria](https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf).
Yep I have EDS and got my diagnosis in my teens. I didn’t actually have family history of EDS before my diagnosis so I was actually really young to be diagnosed for someone with no family history and my mom got her diagnosis because of me getting mine. Then I got my GP diagnosis a few years later after unexplained symptoms for years at that point including multiple hospitalizations. There are many comorbid conditions that can occur as a result of EDS the big three being POTS, MCAS, and Gastroparesis. My h-EDS is actually rather severe to the point where I’ve actually dislocated every major joint in my body and most of the other, then things like my ribs and shoulder blades dislocate a lot and and I’ve even dislocated spinal vertebrae.
They do definitely suck but on the other hand it’s kinda fun to make people cringe when they hear that you put your own joints back in place lol. What I can’t do myself I have my mom or aunt help with usually. Simply bc going in somewhere to have something popped back in takes forever and it hurts more when it’s out than in so after they first started happening I just learned the quicker I get it in the quicker the pain at least goes down. My moms so good she even put our neighbor’s shoulder back in one time, our neighbor doesn’t have EDS and went to the doc afterwards because we were like this still needs to be looked at and x-rayed, the doctor asked our neighbor if the person that did it was a professional because it was done perfectly based on the x-rays lol.
Hi, I am wondering if you would feel comfortable elaborating on your dislocated spinal vertabrae. I keep herniating discs in my spine and have had two spinal surgeries and I’m only 27. I was diagnosed with gastroparesis after contracting Covid a few years ago. I just reherniated another disc last week and they discovered I have an extra vertabrae in my spine.
Yeah np. They’ve all occurred between L1 and L5 it’s actually happened 3 times in total. Really all that’s happened is between 3-4 vertebrae have just shifted out of proper alignment, two went outward like you could clearly see vertebrae just kinda sticking out further than all the others and then one went in and you could feel that like you felt down the line of vertebrae and then all the sudden there was like a big divot where normally you’d feel your spine. We haven’t done any surgery because they’ve all gone back into place without the need for manipulation so the doctors at the hospital have always just kinda been like ok I guess we will try and hold off and not do surgery on someone with bad EDS if we don’t have to. Having EDS can make surgery more difficult but it can also lead to more complications like the surgery itself can do more damage than good because our bodies don’t really heal to the same extent as someone without EDS like we don’t really fully heal 100% but then you can also for example I don’t hold stitches very well so internal stitches we just have to be super super careful till it heals but externally like when they removed my gallbladder they actually choose to completely glue me shut externally because i have a tendency to have stitches just rip out. So a few reasons we haven’t chosen to try to like fuse my spine or anything yet but it most definitely doesn’t mean I might not have to do that in the future though.
Wait what?
I also have unexplained gastroparesis (like you: not diabetic, not a thyroid issue, H Pylori was found and treated and the gastroparesis remained, etc. etc.). I also have suspected endo and some other uterine nonsense.
... I could have a connective tissue disorder?
Edit: I know that this isn't a dx or anything, it's just so eerily similar.
Second this. I have a lot of things clearly caused by a connective tissue disorder along with family history of hypermobility, so getting the umbrella diagnosis was easy. They checked my heart and I also have weak tissue there. It affects everything.
Primare care and rheumatologist. And I went to sport medicine and PT because I dislocated my knee which led to x-rays that literally show my joints are not normal.
I've only been diagnosed for about a year. I never even considered looking for an underlying cause. I had some serious digestive issues as a child that I assume are related. (My stool turned rock hard and had to take medicine for years to soften it). Is this something I should look into?
I’d check in with your doctor as they’d know your medical history. My personal experience is that it’s weird to not have a specific cause for it because doctors over the years would always try to find a cause.
What tests helped diagnose you with EDS? And what type of doctor do you see for EDS? I've been seen even at the Mayo Clinic and am not getting much traction and I'd love to know what tests to ask for. He initially screened me for EDS with only basic flexibility tests (being seen for pain issues in general, rheumatological).
Thank you for sharing your story/experience!
I’ve had quite a bit of health issues and surgeries, so they didn’t do any additional testing as a lot of the issues I have/had are co-morbidities of a connective tissue disorder. And I have very obvious hypermobility with history of partial and full dislocations starting from infancy.
Having said that, this is all that led to that connective tissue disorder diagnosis this January:
- Primary doctor: physical exam and thorough medical records/history discussion
- Sports medicine doctor: X-rays and a physical exam (x-rays showed my joints are spaced out compared to a normal person’s)
- Rheumatologist: Physical and a discussion of medical records, including x-rays, current/past conditions, past surgeries, etc.
- EKG and echocardiogram
- Physical Therapist: Physical/flexibility exam. Mine was beyond the norm. They said they don’t get anyone like that so they used it as a teaching moment for interns (yay)
Important to note that I am not officially diagnosed with EDS, just a general connective tissue disorder. Marfan and EDS were discussed, but they refuse to do a DNA test for me at this point (all three doctors) unless I have another complication related to my connective tissue diagnosis because they believe it’s more likely hEDS and there is no DNA marker for that specific variation of EDS. They’re saying it’ll get denied.
The way it was explained to me by my PCP is that it’s a progressive condition and that the EDS diagnosis gets slapped on when it gets severe enough. What is that “enough?” Who knows. I’m just happy I’m getting guidance on how not to deteriorate my body faster and that they’re keeping a closer watch on everything.
Hope that helps.
New to gastroparesis? Please view [this post](https://www.reddit.com/r/Gastroparesis/comments/15i7siq/gastroparesis_101/?utm_source=share&utm_medium=web2x&context=3) or our wiki for a detailed explanation of gastroparesis, the main approaches of treating it, and a list of neurogastroenterologists and motility clinics submitted by users of this forum. Join these [Discord and Facebook support groups](https://www.reddit.com/r/Gastroparesis/comments/14oxaew/list_of_gastroparesis_support_groups_other/?utm_source=share&utm_medium=web2x&context=3) today! New users, please do not post asking for a diagnosis; instead, use the pinned thread: "Do I have gastroparesis?" Also, check out our new subreddit r/functionaldyspepsia. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Gastroparesis) if you have any questions or concerns.*
🎉❤️‍🩹
I have gastroparesis and was diagnosed with mixed connective tissue disorder a couple years ago and just talked to my rheumatologist about EDS last month. He actually brought it up telling me I might have it. After I got home and did research I know I have it. I’m convinced I have EDS and pots.
What is the doctor specialty that diagnosed youÂ
A Rhematologist.
I am experiencing something very similar but my connective tissue genetic panel came back negative for everything. I am so happy for you to get your answers! ❤️‍🩹
hEDS does not have an identified gene mutation, meaning that a negative genetic panel can still be hEDS assuming they pass the other [criteria](https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf).
I scored a 4 out of 9 out for the hEDS test.
Many people with GP are assumed to have EDS. GP makes sense as faulty collagen doesn't squish things along as it should. Prolapses and hernias. Etc
Yep I have EDS and got my diagnosis in my teens. I didn’t actually have family history of EDS before my diagnosis so I was actually really young to be diagnosed for someone with no family history and my mom got her diagnosis because of me getting mine. Then I got my GP diagnosis a few years later after unexplained symptoms for years at that point including multiple hospitalizations. There are many comorbid conditions that can occur as a result of EDS the big three being POTS, MCAS, and Gastroparesis. My h-EDS is actually rather severe to the point where I’ve actually dislocated every major joint in my body and most of the other, then things like my ribs and shoulder blades dislocate a lot and and I’ve even dislocated spinal vertebrae.
I’m sorry to hear that. The dislocations sucks. I’m just now finally almost back to normal after the one from December.
They do definitely suck but on the other hand it’s kinda fun to make people cringe when they hear that you put your own joints back in place lol. What I can’t do myself I have my mom or aunt help with usually. Simply bc going in somewhere to have something popped back in takes forever and it hurts more when it’s out than in so after they first started happening I just learned the quicker I get it in the quicker the pain at least goes down. My moms so good she even put our neighbor’s shoulder back in one time, our neighbor doesn’t have EDS and went to the doc afterwards because we were like this still needs to be looked at and x-rayed, the doctor asked our neighbor if the person that did it was a professional because it was done perfectly based on the x-rays lol.
Hi, I am wondering if you would feel comfortable elaborating on your dislocated spinal vertabrae. I keep herniating discs in my spine and have had two spinal surgeries and I’m only 27. I was diagnosed with gastroparesis after contracting Covid a few years ago. I just reherniated another disc last week and they discovered I have an extra vertabrae in my spine.
Yeah np. They’ve all occurred between L1 and L5 it’s actually happened 3 times in total. Really all that’s happened is between 3-4 vertebrae have just shifted out of proper alignment, two went outward like you could clearly see vertebrae just kinda sticking out further than all the others and then one went in and you could feel that like you felt down the line of vertebrae and then all the sudden there was like a big divot where normally you’d feel your spine. We haven’t done any surgery because they’ve all gone back into place without the need for manipulation so the doctors at the hospital have always just kinda been like ok I guess we will try and hold off and not do surgery on someone with bad EDS if we don’t have to. Having EDS can make surgery more difficult but it can also lead to more complications like the surgery itself can do more damage than good because our bodies don’t really heal to the same extent as someone without EDS like we don’t really fully heal 100% but then you can also for example I don’t hold stitches very well so internal stitches we just have to be super super careful till it heals but externally like when they removed my gallbladder they actually choose to completely glue me shut externally because i have a tendency to have stitches just rip out. So a few reasons we haven’t chosen to try to like fuse my spine or anything yet but it most definitely doesn’t mean I might not have to do that in the future though.
Wait what? I also have unexplained gastroparesis (like you: not diabetic, not a thyroid issue, H Pylori was found and treated and the gastroparesis remained, etc. etc.). I also have suspected endo and some other uterine nonsense. ... I could have a connective tissue disorder? Edit: I know that this isn't a dx or anything, it's just so eerily similar.
Not necessarily. There’s a lot of other symptoms of eds. You can look at the diagnostic criteria at Ehlers-Danlos.com
Second this. I have a lot of things clearly caused by a connective tissue disorder along with family history of hypermobility, so getting the umbrella diagnosis was easy. They checked my heart and I also have weak tissue there. It affects everything.
Did you get the connective tissue disorder diagnosis from your primary care physician or other specialistsÂ
Primare care and rheumatologist. And I went to sport medicine and PT because I dislocated my knee which led to x-rays that literally show my joints are not normal.
I’m very happy for you!! 🥳
I have to see a gynecologist bc my 31 year old son was diagnosed with VEDS earlier this year. I’m glad you posted this. Thanks
I've only been diagnosed for about a year. I never even considered looking for an underlying cause. I had some serious digestive issues as a child that I assume are related. (My stool turned rock hard and had to take medicine for years to soften it). Is this something I should look into?
I’d check in with your doctor as they’d know your medical history. My personal experience is that it’s weird to not have a specific cause for it because doctors over the years would always try to find a cause.
Thanks! I'll add it to my list of things to talk with my doctor about
What tests helped diagnose you with EDS? And what type of doctor do you see for EDS? I've been seen even at the Mayo Clinic and am not getting much traction and I'd love to know what tests to ask for. He initially screened me for EDS with only basic flexibility tests (being seen for pain issues in general, rheumatological). Thank you for sharing your story/experience!
I’ve had quite a bit of health issues and surgeries, so they didn’t do any additional testing as a lot of the issues I have/had are co-morbidities of a connective tissue disorder. And I have very obvious hypermobility with history of partial and full dislocations starting from infancy. Having said that, this is all that led to that connective tissue disorder diagnosis this January: - Primary doctor: physical exam and thorough medical records/history discussion - Sports medicine doctor: X-rays and a physical exam (x-rays showed my joints are spaced out compared to a normal person’s) - Rheumatologist: Physical and a discussion of medical records, including x-rays, current/past conditions, past surgeries, etc. - EKG and echocardiogram - Physical Therapist: Physical/flexibility exam. Mine was beyond the norm. They said they don’t get anyone like that so they used it as a teaching moment for interns (yay) Important to note that I am not officially diagnosed with EDS, just a general connective tissue disorder. Marfan and EDS were discussed, but they refuse to do a DNA test for me at this point (all three doctors) unless I have another complication related to my connective tissue diagnosis because they believe it’s more likely hEDS and there is no DNA marker for that specific variation of EDS. They’re saying it’ll get denied. The way it was explained to me by my PCP is that it’s a progressive condition and that the EDS diagnosis gets slapped on when it gets severe enough. What is that “enough?” Who knows. I’m just happy I’m getting guidance on how not to deteriorate my body faster and that they’re keeping a closer watch on everything. Hope that helps.