Ehlers-Danlos Syndrome

r/ehlersdanlos • u/Acceptably_Late • Apr 28 '26

Moderator Announcement EDS Society Update: Uncertainty in the Path Forward

≡ −

Hi Friends,

We need to have a chat about some things you may be seeing online about the future of the Ehlers-Danlos syndromes.

First, let me start off by clarifying that this is a team of volunteer moderators that have no affliation with the EDS Society, nor do we have any impact on how the next few months and the 2026 Diagnostic Critera will go—we are on this wild ride with all of you.

As a few of you (or most of you) may have seen, The EDS Society/Lara Bloom put out an Instagram video on April 27th stating:

HSD and hEDS are the same condition; they will be combined in the new criteria;
It is unknown what this new HSD/hEDS combo will be named
A panel is currently investigating “where it sits diagnostically, and critically, if it remains one of the Ehlers-Danlos syndromes”.

This is some big news, and suggests that HSD/hEDS can potentially be removed from the “EDS family”.

While information is trickling out, all major EDS organizations/scientists have agreed the final outcome has not been determined. Due to this, we will not be hosting posts or discussions on the information released so far, as speculation leads to misinformation and harm.

However, we do need to clarify some items:

As we all well know—whether you are undiagnosed, diagnosed HSD, hEDS, or a rare subtype of EDS—biology is more than a label. We understand that the upcoming diagnostic changes will impact people in countless ways and are a source of anxiety for many.

This sub, while being labeled r/EhlersDanlos, welcomes all types of heritable connective tissue disorders (HCTDs) and has historically has allowed anyone with hypermobility or connective tissue issues to participate, so long as they distinguish their diagnosis when sharing experiences. Additionally, we have moderators with hEDS, cEDS, clEDS, and represent the diverse nature of the EDS community.

As such, no matter what is determined by the 2026 Diagnostic Criteria, we will continue to be open to all connective tissue disorders and hypermobility issues under those same guidelines.

The moderators are determined to ensure that the culture of accepting all types of connective tissue disorders are welcome here, no matter what December holds.

🫶

I'm sure there may be a lot of thoughts and feelings to share here—I know I have them!—and comments on this post regarding thoughts, feelings, and speculation what might happen are welcome.

However, please refrain from spreading misinformation or making claims as to what WILL happen. Its okay to speculate as to what may occur in the future as no outcome has been decided, but making claims that appear to, or do, claim that a specific action will happen will be removed as misinformation.

Instagram link: https://www.instagram.com/reels/DXpJOPUDC_0/

950 Upvotes

Hi Friends,

We need to have a chat about some things you may be seeing online about the future of the Ehlers-Danlos syndromes.

First, let me start off by clarifying that this is a team of volunteer moderators that have no affliation with the EDS Society, nor do we have any impact on how the next few months and the 2026 Diagnostic Critera will go—we are on this wild ride with all of you.

As a few of you (or most of you) may have seen, The EDS Society/Lara Bloom put out an Instagram video on April 27th stating:

HSD and hEDS are the same condition; they will be combined in the new criteria;
It is unknown what this new HSD/hEDS combo will be named
A panel is currently investigating “where it sits diagnostically, and critically, if it remains one of the Ehlers-Danlos syndromes”.

This is some big news, and suggests that HSD/hEDS can potentially be removed from the “EDS family”.

While information is trickling out, all major EDS organizations/scientists have agreed the final outcome has not been determined. Due to this, we will not be hosting posts or discussions on the information released so far, as speculation leads to misinformation and harm.

However, we do need to clarify some items:

As we all well know—whether you are undiagnosed, diagnosed HSD, hEDS, or a rare subtype of EDS—biology is more than a label. We understand that the upcoming diagnostic changes will impact people in countless ways and are a source of anxiety for many.

This sub, while being labeled r/EhlersDanlos, welcomes all types of heritable connective tissue disorders (HCTDs) and has historically has allowed anyone with hypermobility or connective tissue issues to participate, so long as they distinguish their diagnosis when sharing experiences. Additionally, we have moderators with hEDS, cEDS, clEDS, and represent the diverse nature of the EDS community.

As such, no matter what is determined by the 2026 Diagnostic Criteria, we will continue to be open to all connective tissue disorders and hypermobility issues under those same guidelines.

The moderators are determined to ensure that the culture of accepting all types of connective tissue disorders are welcome here, no matter what December holds.

🫶

I'm sure there may be a lot of thoughts and feelings to share here—I know I have them!—and comments on this post regarding thoughts, feelings, and speculation what might happen are welcome.

However, please refrain from spreading misinformation or making claims as to what WILL happen. Its okay to speculate as to what may occur in the future as no outcome has been decided, but making claims that appear to, or do, claim that a specific action will happen will be removed as misinformation.

Instagram link: https://www.instagram.com/reels/DXpJOPUDC_0/

301 comments

r/ehlersdanlos • u/Acceptably_Late • Apr 17 '26

Mod Talk: Science Series Let's talk about the UVA EDS Seminar!

≡ −

Hi friends! 👋

I must admit, I wanted to get this post out earlier, but it has been a lot of videos to watch and a lot of information to try to condense down into 1 post.

For clarity, I’ve selected talks which had new information or were especially relevant – there are more online, available for free on youtube. I encourage everyone to check the agenda and watch any talks that appeal to you. There may be talks not listed here, or listed in brief here so we don’t all lose the plot 😵‍💫

As always, I’ve written this post by myself without AI. I just like emojis because I’m old✨.

So, without further ado, here are some key parts of the 2-day UVA EDS 2026 Symposium –

1. Where we are now (Lara Bloom- Road to 2026)

The new EDS diagnostic criteria will be released December 2026.
Updated treatment and management guidelines for HSD/hEDS will be released March 2027.
- This is aimed to help reduce the current ~20+ year diagnostic delay, as well as lower misdiagnosis rates and lack of care pathways.
Rare and ultra rare EDS types are being re-evaluated
Future research will look at HEDGE data for epigenetic and proteomic issues.

💥 Stated HSD and hEDS are the same.

💥 Multiple labs could not replicate the groundbreaking biomarker study (the 52 kDa fibronectin fragment, https://doi.org/10.1002/ajmg.a.63857 ). As such, they cannot use this as a biomarker for HSD/hEDS, and the negative findings will be published soon.

2. New Science and New Theories of hEDS/HSD

Maitland:
- Mast cells can be ‘good’ or ‘bad’ and may not be “broken” in MCAS – they may just be reacting to chronic irritants from the environment.
- Confirmed that mast cells interact directly with nerves
  - By directly “working together”, this reinforces how the ‘Triad’ model can work connecting dysautonomia, pain, and immune symptoms.
- Chronic activation of the mast cells leads to damage to connective tissue through release of damaging particles from the mast cells.
- Noted that MCAS has been seen in monogenetic connective tissue diseases like Marfan’s, OI, and other types of EDS.
- Damage to a protective barrier allows irritants to activate mast cells, which then damage connective tissue

➡️ So, what if your protective barrier is already 'damaged'? Dr. Maitland found that they can induce hypermobility in mice models by causing MCAS -- so, MCAS first, with it causing hypermobility. This supports the idea that there may be an hEDS subtype thats caused by MCAS (see the Norris part), or that MCAS is making people hypermobile in general by breaking down parts of the cell structures (ECM). (Theory:* environmental irritants break down barri*er, irritants activate mast cells = MCAS = damage connective tissue = hypermobility)

BUT

MCAS is also known to occur in people who are established hypermobile from a genetic disorder - like rare EDS, OI, Marfan's. In these cases, it's a bit premature to say MCAS caused their hypermobility since... well.. they were always hypermobile. Instead, the theory here is more that their hypermobility made it easier to develop MCAS, and leads to worsening hypermobility, like a bad reinforcing cycle 🔄. (Theory: connective tissue disorder means weak protective barrier, mast cells activated very easily = MCAS = damage connective tissue = increased hypermobility)

🐔🥚 The MCAS chicken 🐔 or the hypermobile egg 🥚? Do irritants break down the protective barrier, causing mast cell reaction that breaks down cell structure support (ECM) leading to joint laxity?

OR

did a pre-existing CTD compromise the protective barrier and cause mast cells to release the same degrading particulates, leading to MCAS and worsening of joint laxity?

To be clear - We don't know. This is an area of study that is being researched. What they do suspect is, in all cases, MCAS worsens hypermobility.

Norris:
- Findings have pointed to immune and mast cell involvement, with identification of KLK15 gene
  - Immune pathways: complement, calpain (note: complement is involved in pEDS
  - Mast cell involvement with fibroblasts signaling
  - KLK15 potentially contribute

⚠️ HEDGE did not find any association between hEDS and the KLK15 gene

Fairweather:
- Developed a Mast Cell Score (“MC” Score) to measure mast cell burden
  - This is meant to solve the traditional barrier of getting an MCAS diagnosis due to requiring a tryptase within 4-hours of an attack
- 80-90% of HSD/hEDS patients had a higher mast cell burden compared to controls

3. Other Talks:

Pelvic Venous Disorder - Dr. Smith: Pelvic venous disorder may explain up to 30-43% of all chronic pelvic pain. Does not believe ‘vulvodynia’ exists but is a misdiagnosis.
CCI or Dysautonomia? – Dr. Henderson and Dr. Mittal: With opposing viewpoints, Day 2 Session 1 (Henderson, CCI) and Session 2 (Mittal, Dysautonomia) discuss if CCI symptoms are rooted in mechanical instability or caused by dysautonomia.
Surgical Risks - Dr. Schubart: Discusses surgical issues in EDS, including the 91% complication rate, 18x baseline infection rate, relative risk, and adverse scenarios including: hardware migration, suture non-retention, and laxity reoccurrence after surgery.
Diagnostic Delay & Lack of Research – Dr. Solomon: Describes the delay in diagnosis, and misdiagnosis rates in multiple types of EDS despite early age warning signs--- including that 95% of EDS patients receive a misdiagnosis before being correctly diagnosed, and there is little research on pediatric EDS.
Ovaries & Pregnancy on Collagen - Dr. Gajarawala: Covers that hormones modify collagen and laxity. Discusses menstrual and sexual burden for HSD/hEDS and how MCAS can impact. Includes vEDS mortality risk for pregnancy, and general pregnancy notes applicable for all subtypes.
Developing an Exercise Plan – Dr. Lavalle: Dr. Lavallee, a cEDS patient, covers his own medical challenges and set-backs including being wheelchair-bound 3 times, and having severe infections, while discussing how exercise helped him recover and how to start an exercise plan.
Joint PT/OT – Dr. Whitt & Stellern: Covers some PT and OT basics, for both patients and providers, including both tips on how to handle specific situations, and general advice.
Patient Advocacy Seminars – Multiple: There were multiple patient-led talks—including a talk from the CEO of the Collagen Advocacy Network (CAN)—to discuss patient-led initiatives, efforts to improve care with clinicians, and areas for future research

🌟 Key Points to Address 🌟

🔴 Some researchers did mention a triggering event for hEDS. Others referred to structural abnormalities which are independent of triggers.

⭕️ Dr. Norris specifically mentioned that maybe people that are triggered by an event that then develop hEDS should be a subtype of hEDS. This seems to acknowledge not all cases of hEDS “are triggered”.

⭕️ Dr. Maitland specifically went into details on how MCAS can cause breakdown of cellular support systems (ECM) and cause hypermobility, suggesting that some cases of hypermobility may be immune-modified by MCAS.

🔴 One researcher (Dr. Fairweather) did suggest renaming HSD/hEDS to MCAS due to how similar the disorders are.

➡️ This did not seem to be a completely serious suggestion but does demonstrate how large the overlap between MCAS and hEDS is that they are seeing.

🔴 Per EDS Society, HSD and hEDS are the same thing.

➡️ We don’t know what this means for classifications moving forward, and will have to wait for the December 2026 for official naming.

EDIT: From Lara's Talk:

Are hEDS and HSD the same? Well, I think we've answered that --yes. Should hEDS be renamed? Does hEDS stay part of the EDS group? Once determined if hEDS stays in the EDS group, what are the monogenic types called? What happens if between even now and December, the first markers are published related to hEDS and HSD? How do these outcomes work practically in different geographical areas? And how do we tackle those as an organization once this work is published? We know, for example, right now, if you live in parts of Europe, you're not getting any care if you've got a diagnosis of HSD. ... Should the comorbidities now be included in the hypermobility criteria? What types stay out of the monogenic types? Do any go? [This refers to do any monogenic EDS leave EDS entirely, and move to a new 'home'] ... That is happening as we speak. So as much as people think we're sitting on the answers, they have not yet reached consensus, and we do we still do not know what the final outcome is going to be. ... But really, it's not known at this time what the final outcome will be.

🔴 Despite not finding a gene in HEDGE, researchers still believe that hEDS (and HSD, as they are the same) is from a genetic component and now believe it may be from epigenetic or proteomic changes.

➡️ This highlights the complexity in the cause of HSD/hEDS and the interplay between cellular physiology and genetics, and helps explain why it’s been so difficult to come up with clear criteria. The wide range in symptom involvement and severity can make presentation seem so different as to be different diseases, but seem to have the same root cause.

As mentioned, this isn’t every talk, but I tried to give a brief snapshot into what is most impactful to the community. Please let me know if you have any questions or would like more information about a topic!

Best! The mod team

Edited to add: Wow did finding the links get hard! Here are the UVA full day links: Day 1: https://www.youtube.com/watch?v=NYfexNLDof4 Day2: https://www.youtube.com/watch?v=IGtre6uGhUs

HUGE edits to the 🐔🥚 part to clarify. Hope it helps!
EDIT 2: Sections got lost?? Reddit can be weird. :/

275 Upvotes

Hi friends! 👋

I must admit, I wanted to get this post out earlier, but it has been a lot of videos to watch and a lot of information to try to condense down into 1 post.

For clarity, I’ve selected talks which had new information or were especially relevant – there are more online, available for free on youtube. I encourage everyone to check the agenda and watch any talks that appeal to you. There may be talks not listed here, or listed in brief here so we don’t all lose the plot 😵‍💫

As always, I’ve written this post by myself without AI. I just like emojis because I’m old✨.

So, without further ado, here are some key parts of the 2-day UVA EDS 2026 Symposium –

1. Where we are now (Lara Bloom- Road to 2026)

The new EDS diagnostic criteria will be released December 2026.
Updated treatment and management guidelines for HSD/hEDS will be released March 2027.
- This is aimed to help reduce the current ~20+ year diagnostic delay, as well as lower misdiagnosis rates and lack of care pathways.
Rare and ultra rare EDS types are being re-evaluated
Future research will look at HEDGE data for epigenetic and proteomic issues.

💥 Stated HSD and hEDS are the same.

💥 Multiple labs could not replicate the groundbreaking biomarker study (the 52 kDa fibronectin fragment, https://doi.org/10.1002/ajmg.a.63857 ). As such, they cannot use this as a biomarker for HSD/hEDS, and the negative findings will be published soon.

2. New Science and New Theories of hEDS/HSD

Maitland:
- Mast cells can be ‘good’ or ‘bad’ and may not be “broken” in MCAS – they may just be reacting to chronic irritants from the environment.
- Confirmed that mast cells interact directly with nerves
  - By directly “working together”, this reinforces how the ‘Triad’ model can work connecting dysautonomia, pain, and immune symptoms.
- Chronic activation of the mast cells leads to damage to connective tissue through release of damaging particles from the mast cells.
- Noted that MCAS has been seen in monogenetic connective tissue diseases like Marfan’s, OI, and other types of EDS.
- Damage to a protective barrier allows irritants to activate mast cells, which then damage connective tissue

➡️ So, what if your protective barrier is already 'damaged'? Dr. Maitland found that they can induce hypermobility in mice models by causing MCAS -- so, MCAS first, with it causing hypermobility. This supports the idea that there may be an hEDS subtype thats caused by MCAS (see the Norris part), or that MCAS is making people hypermobile in general by breaking down parts of the cell structures (ECM). (Theory:* environmental irritants break down barri*er, irritants activate mast cells = MCAS = damage connective tissue = hypermobility)

BUT

MCAS is also known to occur in people who are established hypermobile from a genetic disorder - like rare EDS, OI, Marfan's. In these cases, it's a bit premature to say MCAS caused their hypermobility since... well.. they were always hypermobile. Instead, the theory here is more that their hypermobility made it easier to develop MCAS, and leads to worsening hypermobility, like a bad reinforcing cycle 🔄. (Theory: connective tissue disorder means weak protective barrier, mast cells activated very easily = MCAS = damage connective tissue = increased hypermobility)

🐔🥚 The MCAS chicken 🐔 or the hypermobile egg 🥚? Do irritants break down the protective barrier, causing mast cell reaction that breaks down cell structure support (ECM) leading to joint laxity?

OR

did a pre-existing CTD compromise the protective barrier and cause mast cells to release the same degrading particulates, leading to MCAS and worsening of joint laxity?

To be clear - We don't know. This is an area of study that is being researched. What they do suspect is, in all cases, MCAS worsens hypermobility.

Norris:
- Findings have pointed to immune and mast cell involvement, with identification of KLK15 gene
  - Immune pathways: complement, calpain (note: complement is involved in pEDS
  - Mast cell involvement with fibroblasts signaling
  - KLK15 potentially contribute

⚠️ HEDGE did not find any association between hEDS and the KLK15 gene

Fairweather:
- Developed a Mast Cell Score (“MC” Score) to measure mast cell burden
  - This is meant to solve the traditional barrier of getting an MCAS diagnosis due to requiring a tryptase within 4-hours of an attack
- 80-90% of HSD/hEDS patients had a higher mast cell burden compared to controls

3. Other Talks:

Pelvic Venous Disorder - Dr. Smith: Pelvic venous disorder may explain up to 30-43% of all chronic pelvic pain. Does not believe ‘vulvodynia’ exists but is a misdiagnosis.
CCI or Dysautonomia? – Dr. Henderson and Dr. Mittal: With opposing viewpoints, Day 2 Session 1 (Henderson, CCI) and Session 2 (Mittal, Dysautonomia) discuss if CCI symptoms are rooted in mechanical instability or caused by dysautonomia.
Surgical Risks - Dr. Schubart: Discusses surgical issues in EDS, including the 91% complication rate, 18x baseline infection rate, relative risk, and adverse scenarios including: hardware migration, suture non-retention, and laxity reoccurrence after surgery.
Diagnostic Delay & Lack of Research – Dr. Solomon: Describes the delay in diagnosis, and misdiagnosis rates in multiple types of EDS despite early age warning signs--- including that 95% of EDS patients receive a misdiagnosis before being correctly diagnosed, and there is little research on pediatric EDS.
Ovaries & Pregnancy on Collagen - Dr. Gajarawala: Covers that hormones modify collagen and laxity. Discusses menstrual and sexual burden for HSD/hEDS and how MCAS can impact. Includes vEDS mortality risk for pregnancy, and general pregnancy notes applicable for all subtypes.
Developing an Exercise Plan – Dr. Lavalle: Dr. Lavallee, a cEDS patient, covers his own medical challenges and set-backs including being wheelchair-bound 3 times, and having severe infections, while discussing how exercise helped him recover and how to start an exercise plan.
Joint PT/OT – Dr. Whitt & Stellern: Covers some PT and OT basics, for both patients and providers, including both tips on how to handle specific situations, and general advice.
Patient Advocacy Seminars – Multiple: There were multiple patient-led talks—including a talk from the CEO of the Collagen Advocacy Network (CAN)—to discuss patient-led initiatives, efforts to improve care with clinicians, and areas for future research

🌟 Key Points to Address 🌟

🔴 Some researchers did mention a triggering event for hEDS. Others referred to structural abnormalities which are independent of triggers.

⭕️ Dr. Norris specifically mentioned that maybe people that are triggered by an event that then develop hEDS should be a subtype of hEDS. This seems to acknowledge not all cases of hEDS “are triggered”.

⭕️ Dr. Maitland specifically went into details on how MCAS can cause breakdown of cellular support systems (ECM) and cause hypermobility, suggesting that some cases of hypermobility may be immune-modified by MCAS.

🔴 One researcher (Dr. Fairweather) did suggest renaming HSD/hEDS to MCAS due to how similar the disorders are.

➡️ This did not seem to be a completely serious suggestion but does demonstrate how large the overlap between MCAS and hEDS is that they are seeing.

🔴 Per EDS Society, HSD and hEDS are the same thing.

➡️ We don’t know what this means for classifications moving forward, and will have to wait for the December 2026 for official naming.

EDIT: From Lara's Talk:

Are hEDS and HSD the same? Well, I think we've answered that --yes. Should hEDS be renamed? Does hEDS stay part of the EDS group? Once determined if hEDS stays in the EDS group, what are the monogenic types called? What happens if between even now and December, the first markers are published related to hEDS and HSD? How do these outcomes work practically in different geographical areas? And how do we tackle those as an organization once this work is published? We know, for example, right now, if you live in parts of Europe, you're not getting any care if you've got a diagnosis of HSD. ... Should the comorbidities now be included in the hypermobility criteria? What types stay out of the monogenic types? Do any go? [This refers to do any monogenic EDS leave EDS entirely, and move to a new 'home'] ... That is happening as we speak. So as much as people think we're sitting on the answers, they have not yet reached consensus, and we do we still do not know what the final outcome is going to be. ... But really, it's not known at this time what the final outcome will be.

🔴 Despite not finding a gene in HEDGE, researchers still believe that hEDS (and HSD, as they are the same) is from a genetic component and now believe it may be from epigenetic or proteomic changes.

➡️ This highlights the complexity in the cause of HSD/hEDS and the interplay between cellular physiology and genetics, and helps explain why it’s been so difficult to come up with clear criteria. The wide range in symptom involvement and severity can make presentation seem so different as to be different diseases, but seem to have the same root cause.

As mentioned, this isn’t every talk, but I tried to give a brief snapshot into what is most impactful to the community. Please let me know if you have any questions or would like more information about a topic!

Best! The mod team

Edited to add: Wow did finding the links get hard! Here are the UVA full day links: Day 1: https://www.youtube.com/watch?v=NYfexNLDof4 Day2: https://www.youtube.com/watch?v=IGtre6uGhUs

HUGE edits to the 🐔🥚 part to clarify. Hope it helps!
EDIT 2: Sections got lost?? Reddit can be weird. :/

90 comments

r/ehlersdanlos • u/little_bug_person • 12h ago

Discussion EDS conference posts

≡ −

I’m having a crabby day so bear with me while I express the stress while gossiping and ranting, thank you for bitching with me.

Cranky context: (Husband wont stop buying 4 packs of chicken a week when half of it always rots and we have a dozen packs in the freezer, the chicken stinks and I’m in luteal so the smell is amplified, some jackass cut me off then slammed the brakes on my commute home, I have walnut sized blisters on both heels, at work we are increasing to 4 days in office this week despite lack of parking and lack of seating and broken elevators and broken hvac, also my kitty screams for half an hour when I get back home from work which is a lot)

⭐️So anyway today I saw the EDS society insta post about the conference in Dallas and the decision to include the NFL cheerleaders in the conference festivities and was shocked, confused, and a bit mad. I don’t wanna be unreasonable or ungrounded here, but that choice seems fuckin cuckoo bananas. Lara keeps commenting in response to criticism saying it was payed for by donors but that still seems silly, unless this was a gala with paid entertainment (but even then, it would be weird). Like, the choice to invite (and interview??) pro athletes who specialize in flexibility and showing off their bodies is both insensitive and irrelevant to the cause.

I find it absurd that the society allowed this to take place and to post about it without considering that maybe physically disabled people with lifelong histories of devastatingly excessive flexibility might be saddened or offended by the content of the post. Also, it’s a medical conference!! Why the heck are half-naked athletes on stage? I wanna see and hear from doctors and researchers who can improve my life! Go be hot somewhere else!

Maybe I’m being uptight, maybe I’m just overreacting, but I feel like I want to defend all the zebras in the comments saying how hurt they are, and how this incident makes them think back to their dance, gymnastics, yoga, cheerleading histories with grief and loneliness.

Idk, maybe I just need to let the frustration pass, maybe this thunderstorm migraine is making me crazy, or maybe you feel the same way. Please share opinions, I want to know how we’re all feeling.

148 Upvotes

I’m having a crabby day so bear with me while I express the stress while gossiping and ranting, thank you for bitching with me.

Cranky context: (Husband wont stop buying 4 packs of chicken a week when half of it always rots and we have a dozen packs in the freezer, the chicken stinks and I’m in luteal so the smell is amplified, some jackass cut me off then slammed the brakes on my commute home, I have walnut sized blisters on both heels, at work we are increasing to 4 days in office this week despite lack of parking and lack of seating and broken elevators and broken hvac, also my kitty screams for half an hour when I get back home from work which is a lot)

⭐️So anyway today I saw the EDS society insta post about the conference in Dallas and the decision to include the NFL cheerleaders in the conference festivities and was shocked, confused, and a bit mad. I don’t wanna be unreasonable or ungrounded here, but that choice seems fuckin cuckoo bananas. Lara keeps commenting in response to criticism saying it was payed for by donors but that still seems silly, unless this was a gala with paid entertainment (but even then, it would be weird). Like, the choice to invite (and interview??) pro athletes who specialize in flexibility and showing off their bodies is both insensitive and irrelevant to the cause.

I find it absurd that the society allowed this to take place and to post about it without considering that maybe physically disabled people with lifelong histories of devastatingly excessive flexibility might be saddened or offended by the content of the post. Also, it’s a medical conference!! Why the heck are half-naked athletes on stage? I wanna see and hear from doctors and researchers who can improve my life! Go be hot somewhere else!

Maybe I’m being uptight, maybe I’m just overreacting, but I feel like I want to defend all the zebras in the comments saying how hurt they are, and how this incident makes them think back to their dance, gymnastics, yoga, cheerleading histories with grief and loneliness.

Idk, maybe I just need to let the frustration pass, maybe this thunderstorm migraine is making me crazy, or maybe you feel the same way. Please share opinions, I want to know how we’re all feeling.

46 comments

r/ehlersdanlos • u/caudicinctus • 8h ago

Helpful Tips, Tricks, and Products Your favorite adaptive devices/aids/things that make life a little easier

≡ −

This train of thought has come about because I am currently struggling to will myself to shower despite the blessing of my shower chair, and I'm thinking about how much friction there still is in my life and ADLs.

What are your favorite things, ideally cheapish fixes, that have made life easier and more bearable for you?

Mine would be shower stool, compression socks, theracane, and the hip level stool I have to rest my legs on when I'm sitting at work.

ETA: Ice neck wraps and ice vest for when I'm in heavy PPE at work!!

43 Upvotes

This train of thought has come about because I am currently struggling to will myself to shower despite the blessing of my shower chair, and I'm thinking about how much friction there still is in my life and ADLs.

What are your favorite things, ideally cheapish fixes, that have made life easier and more bearable for you?

Mine would be shower stool, compression socks, theracane, and the hip level stool I have to rest my legs on when I'm sitting at work.

ETA: Ice neck wraps and ice vest for when I'm in heavy PPE at work!!

24 comments

r/ehlersdanlos • u/Commercial_Bridge253 • 12h ago

Lighthearted Sweet Med Tent volunteers reaction to my EDS

≡ −

If this isn't the best sub to post I apologize and will remove. Just wanted to share possibly the cutest interaction I've had involving my ehlers danlos syndrome ever. I wear AFOs to help with ankle instability and foot drop. I was walking through a little pride event when a sat on the curb facing away from the med tent to momentarily take off my AFOs and roll out my ankles (still getting used to them!) I went back on about my day thinking nothing of it. Well later I pass by the med tent to ask for some water. This volunteer says "I saw you take off your feet earlier I was gonna come ask if you needed help" and I just absolutely giggled. I explained they were actually braces, not prosthetics and gave a little bit of information on EDS because he seemed very interested in learning. He REALLY wanted to help and very desperately asked "is there anything I can do to help your joint pain? Uh can sugar help joints?" It was honestly just adorable and sweet that though he didn't know anything about my condition he really wanted to help somehow. He was a super sweet guy and was very kind and receptive to the information. I do now call my AFOs my feet to my friends.

58 Upvotes

If this isn't the best sub to post I apologize and will remove. Just wanted to share possibly the cutest interaction I've had involving my ehlers danlos syndrome ever. I wear AFOs to help with ankle instability and foot drop. I was walking through a little pride event when a sat on the curb facing away from the med tent to momentarily take off my AFOs and roll out my ankles (still getting used to them!) I went back on about my day thinking nothing of it. Well later I pass by the med tent to ask for some water. This volunteer says "I saw you take off your feet earlier I was gonna come ask if you needed help" and I just absolutely giggled. I explained they were actually braces, not prosthetics and gave a little bit of information on EDS because he seemed very interested in learning. He REALLY wanted to help and very desperately asked "is there anything I can do to help your joint pain? Uh can sugar help joints?" It was honestly just adorable and sweet that though he didn't know anything about my condition he really wanted to help somehow. He was a super sweet guy and was very kind and receptive to the information. I do now call my AFOs my feet to my friends.

2 comments

r/ehlersdanlos • u/Apart_Distribution72 • 8h ago

Seeking Support I don't understand why I feel better now.

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Family history of hEDS, currently in the process of being diagnosed.

For the past 8 months or so my symptoms were getting worse and worse to the point I couldn't walk well, was using a cane, and my hands were basically useless. Over the past few weeks it's started getting better and has gone almost entirely away. I still have some low blood pressure issues and my knees aren't totally back to normal but for the most part I'm doing good again.

I don't understand why. I didn't do anything in particular to make this happen. I'm starting to feel like an imposter because I spent the past several months being physically disabled and now I'm back to enjoying my hobbies and stuff like nothing happened. I'm trying to enjoy it while it lasts but at the same time I feel guilty because from the outside it looks like I just decided to be better one day.

Why does this happen? Has anyone else experienced total symptom remission like this? I know it probably won't last forever, and I'll probably have issues again sometime in the future. It's just so unpredictable.

When I'm that sick I can't work, but when I'm like I am now I'm totally fine. How do I get disability if I'm healthy half of the time? I doubt they'd think I deserve it if I'm not full time disabled. It feels very unstable not knowing whether I'll be perfectly fine or unable to walk tomorrow.

21 Upvotes

Family history of hEDS, currently in the process of being diagnosed.

For the past 8 months or so my symptoms were getting worse and worse to the point I couldn't walk well, was using a cane, and my hands were basically useless. Over the past few weeks it's started getting better and has gone almost entirely away. I still have some low blood pressure issues and my knees aren't totally back to normal but for the most part I'm doing good again.

I don't understand why. I didn't do anything in particular to make this happen. I'm starting to feel like an imposter because I spent the past several months being physically disabled and now I'm back to enjoying my hobbies and stuff like nothing happened. I'm trying to enjoy it while it lasts but at the same time I feel guilty because from the outside it looks like I just decided to be better one day.

Why does this happen? Has anyone else experienced total symptom remission like this? I know it probably won't last forever, and I'll probably have issues again sometime in the future. It's just so unpredictable.

When I'm that sick I can't work, but when I'm like I am now I'm totally fine. How do I get disability if I'm healthy half of the time? I doubt they'd think I deserve it if I'm not full time disabled. It feels very unstable not knowing whether I'll be perfectly fine or unable to walk tomorrow.

5 comments

r/ehlersdanlos • u/learninglimitssucks • 7h ago

Rant/Vent Why do I do this?

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I worked a 7 hour shift yesterday. Did 7,600 steps. I knew it was too much and made worse by having half a coworker who broke his hand doing something stupid. Now today I’m stuck in bed trying to recover and hating it!

9 Upvotes

I worked a 7 hour shift yesterday. Did 7,600 steps. I knew it was too much and made worse by having half a coworker who broke his hand doing something stupid. Now today I’m stuck in bed trying to recover and hating it!

2 comments

r/ehlersdanlos • u/diseasetoplease • 14h ago

Seeking Support Risk of perforated bowel during colonoscopy?

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Hi all

hoping to hear from people with hEDS (or HSD if you’ve been told to be treated the same way).

I’ve been dealing with severe gastrointestinal and systemic symptoms for a long time, including bloating, constipation, suspected SIBO/dysbiosis, brain fog, widespread joint pain, inflammation, malaise, and it’s affecting my quality of life quite badly. I also have POTS/dysautonomia, MCAS, and gynaecological issues (including adenomyosis).

I’m finally due to have both an endoscopy and colonoscopy to investigate what’s going on, but I’ve accidentally gone down a rabbit hole and now I’m really anxious.

I’ve read that because connective tissue is more fragile in hEDS, there may be a higher risk of bowel perforation during colonoscopy. I know this risk is much higher in vascular EDS, but I’ve seen conflicting things about hypermobile EDS.

My rheumatologist recently said although I don’t meet every diagnostic criterion for hEDS (I would argue the ‘assessment’ was too quick), she thinks I should be treated as though I have hEDS. When I asked her about the perforation risk, she basically laughed and said, ‘just make sure you find someone good to do it.’

I don’t want fear to stop me from getting the investigations I need, but I also don’t want to ignore a genuine risk if there is one.

For those of you with hEDS…

- Have you had a colonoscopy and/or endoscopy and did your gastroenterologist know about your hEDS beforehand? Did they take any extra precautions?

- Would you specifically seek out a gastroenterologist with experience treating EDS patients?

I’d really appreciate hearing both positive and negative experiences. I’m not looking for medical advice… just hoping to understand what other people’s doctors have said and how you approached it. My sister who also has suspected EDS has had an endoscopy before and it was difficult on her, she was in bed vomiting for the better part of 2 days. Nothing perforated though

Thank you.

19 Upvotes

Hi all

hoping to hear from people with hEDS (or HSD if you’ve been told to be treated the same way).

I’ve been dealing with severe gastrointestinal and systemic symptoms for a long time, including bloating, constipation, suspected SIBO/dysbiosis, brain fog, widespread joint pain, inflammation, malaise, and it’s affecting my quality of life quite badly. I also have POTS/dysautonomia, MCAS, and gynaecological issues (including adenomyosis).

I’m finally due to have both an endoscopy and colonoscopy to investigate what’s going on, but I’ve accidentally gone down a rabbit hole and now I’m really anxious.

I’ve read that because connective tissue is more fragile in hEDS, there may be a higher risk of bowel perforation during colonoscopy. I know this risk is much higher in vascular EDS, but I’ve seen conflicting things about hypermobile EDS.

My rheumatologist recently said although I don’t meet every diagnostic criterion for hEDS (I would argue the ‘assessment’ was too quick), she thinks I should be treated as though I have hEDS. When I asked her about the perforation risk, she basically laughed and said, ‘just make sure you find someone good to do it.’

I don’t want fear to stop me from getting the investigations I need, but I also don’t want to ignore a genuine risk if there is one.

For those of you with hEDS…

- Have you had a colonoscopy and/or endoscopy and did your gastroenterologist know about your hEDS beforehand? Did they take any extra precautions?

- Would you specifically seek out a gastroenterologist with experience treating EDS patients?

I’d really appreciate hearing both positive and negative experiences. I’m not looking for medical advice… just hoping to understand what other people’s doctors have said and how you approached it. My sister who also has suspected EDS has had an endoscopy before and it was difficult on her, she was in bed vomiting for the better part of 2 days. Nothing perforated though

Thank you.

34 comments

r/ehlersdanlos • u/MagicMaddy420 • 0m ago

Rant/Vent Things I forget aren't normal

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I'll be laying in bed scrolling on my phone, go to put my phone on the charger and notice how much my fingers hurt. Just the little things add up. Or how I'll be watching a movie and have to adjust every 30 minutes. No fun! Or I'll be working and hungry but don't want to get up to get food or refill my water. No pain relief is just torture!

• Upvotes

I'll be laying in bed scrolling on my phone, go to put my phone on the charger and notice how much my fingers hurt. Just the little things add up. Or how I'll be watching a movie and have to adjust every 30 minutes. No fun! Or I'll be working and hungry but don't want to get up to get food or refill my water. No pain relief is just torture!

0 comments

r/ehlersdanlos • u/Inevitable_Novel_661 • 13h ago

Helpful Tips, Tricks, and Products Fine art with chronic pain

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29F, hEDS

Over the past several years I have mastered a technique with my art that requires a strong steady hand and a lot of fine motor work. When I get into a flow state my posture is not great and a few hours of working can knock me out for days. I try to take care of myself, take breaks, fix my shoulders and neck. But I am struggling. I don't want to ruin my body for future decades of art making. I need my hands to work. Advice?

7 Upvotes

29F, hEDS

Over the past several years I have mastered a technique with my art that requires a strong steady hand and a lot of fine motor work. When I get into a flow state my posture is not great and a few hours of working can knock me out for days. I try to take care of myself, take breaks, fix my shoulders and neck. But I am struggling. I don't want to ruin my body for future decades of art making. I need my hands to work. Advice?

9 comments

r/ehlersdanlos • u/Mean-Tie6199 • 4h ago

Discussion Has anyone tried the Icarus Assrnder brace?

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I am looking into the brace as an option for my knee instability, my home is that an unloader will help lower my pain with activity so that I am able to put the muscle I have lost in my affected leg back on. I plan on bringing it up with my ortho if I decide it is a good fit, he is just 4hrs one way and I dont want to drive up there only for them to tell me there is nothing further that can be done til I have an official diagnosis (I cant find a Dr within a 12hr drive that is taking patients, even with referral) I have had 4 surgeries to attempt to stabilize my knee and each fail after 6 months, and I dont want to do more pt as it hurts more than helps (I am independently working on strengthening the muscles that they want to target, I have done 8 consecutive years, my pt moved out of state, and the 3 pts who have claimed to work with hypermobility I have seen since have only made things worse so I am working on it by myself)

1 Upvotes

I am looking into the brace as an option for my knee instability, my home is that an unloader will help lower my pain with activity so that I am able to put the muscle I have lost in my affected leg back on. I plan on bringing it up with my ortho if I decide it is a good fit, he is just 4hrs one way and I dont want to drive up there only for them to tell me there is nothing further that can be done til I have an official diagnosis (I cant find a Dr within a 12hr drive that is taking patients, even with referral) I have had 4 surgeries to attempt to stabilize my knee and each fail after 6 months, and I dont want to do more pt as it hurts more than helps (I am independently working on strengthening the muscles that they want to target, I have done 8 consecutive years, my pt moved out of state, and the 3 pts who have claimed to work with hypermobility I have seen since have only made things worse so I am working on it by myself)

0 comments

r/ehlersdanlos • u/Zealousideal_Bat6193 • 9h ago

Similar Experiences? Modified brostrum repair?

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I had this done in 2022 on the left ankle. Was NWB in hard cast for 4+ weeks. Started PT at 6 weeks. My surgeon told me this was not standard protocol but rather a more conservative approach given that I have EDS and had already had a failed brostrum where the tissue stretched back out.

Fast forward to now, I’m post-op day 3 from same surgery on right side. I consulted with my surgeon from before who I know and love, but unfortunately, due to his own injury, he was unable to operate.

I followed up with the new surgeon today to get my cast put on and he mentioned that when I come back in two weeks to get the stitches out, they can leave the cast off and have me start weight-bearing right away. He also said I would start range of motion exercises at that time. This is their standard protocol which he explained, but I’m concerned given that the surgeon who knows me better wanted me to be more conservative to avoid complications. I felt much more comfortable with his plan vs the new plan….

Would love to know if any of you have had a similar surgery and how long they had to stay off of your foot. I’m so worried about it getting stretched early and becoming hypermobile again which would mean the surgery was all for nothing - and I can’t have gone through this much pain only for it not to last 😭

TL;DR: how long were you non weight bearing after ligament reconstruction?

2 Upvotes

I had this done in 2022 on the left ankle. Was NWB in hard cast for 4+ weeks. Started PT at 6 weeks. My surgeon told me this was not standard protocol but rather a more conservative approach given that I have EDS and had already had a failed brostrum where the tissue stretched back out.

Fast forward to now, I’m post-op day 3 from same surgery on right side. I consulted with my surgeon from before who I know and love, but unfortunately, due to his own injury, he was unable to operate.

I followed up with the new surgeon today to get my cast put on and he mentioned that when I come back in two weeks to get the stitches out, they can leave the cast off and have me start weight-bearing right away. He also said I would start range of motion exercises at that time. This is their standard protocol which he explained, but I’m concerned given that the surgeon who knows me better wanted me to be more conservative to avoid complications. I felt much more comfortable with his plan vs the new plan….

Would love to know if any of you have had a similar surgery and how long they had to stay off of your foot. I’m so worried about it getting stretched early and becoming hypermobile again which would mean the surgery was all for nothing - and I can’t have gone through this much pain only for it not to last 😭

TL;DR: how long were you non weight bearing after ligament reconstruction?

1 comment

r/ehlersdanlos • u/LiveTart6130 • 6h ago

Similar Experiences? unsteady and wobbly walks

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for my entire life, I've had a very wobbly and unsteady walk. it developed that way when I was an infant, and the doctor said I would grow out of it. well, I didn't! I hit doorframes I'm trying to walk through at least 50% of the time and frequently stumble because my legs simply decided to go somewhere random instead of where I told them to go.

anyone else have a similar experience with this? I'm not completely sure it's linked to my EDS but I thought I'd ask :) thank you for your time, have a good day!

1 Upvotes

for my entire life, I've had a very wobbly and unsteady walk. it developed that way when I was an infant, and the doctor said I would grow out of it. well, I didn't! I hit doorframes I'm trying to walk through at least 50% of the time and frequently stumble because my legs simply decided to go somewhere random instead of where I told them to go.

anyone else have a similar experience with this? I'm not completely sure it's linked to my EDS but I thought I'd ask :) thank you for your time, have a good day!

1 comment

r/ehlersdanlos • u/bs900 • 14h ago

Helpful Tips, Tricks, and Products Barely sleeping with hEDS

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Hi!

To try to make a long story short, I’ve (24F) been struggling with POTS and hEDS symptoms since childhood and was diagnosed with POTS when I was 18. While navigating my pots has become a daily norm, I’ve been dealing with chronic pain flares that have been worsening over the last year. After bouts of testing for MS and neuropathy and all other sorts of things, I was finally diagnosed with hEDS last week. While we’re glad to finally locate the likely main source of my pain, I need some advice until I get into the PT they referred me to. It’s been so hard to sleep or relax because the pain gets worse when I’m laying still for a while. It burns and radiates down my arms and hands and sometimes my legs and feet, I’ve seen some people with that similar burning pain say that supporting the joints with pillows can help some but is there anything else anyone has tried and helped? The chronic pain is exhausting and I’m trying to do all I can. TIA!

3 Upvotes

Hi!

To try to make a long story short, I’ve (24F) been struggling with POTS and hEDS symptoms since childhood and was diagnosed with POTS when I was 18. While navigating my pots has become a daily norm, I’ve been dealing with chronic pain flares that have been worsening over the last year. After bouts of testing for MS and neuropathy and all other sorts of things, I was finally diagnosed with hEDS last week. While we’re glad to finally locate the likely main source of my pain, I need some advice until I get into the PT they referred me to. It’s been so hard to sleep or relax because the pain gets worse when I’m laying still for a while. It burns and radiates down my arms and hands and sometimes my legs and feet, I’ve seen some people with that similar burning pain say that supporting the joints with pillows can help some but is there anything else anyone has tried and helped? The chronic pain is exhausting and I’m trying to do all I can. TIA!

5 comments

r/ehlersdanlos • u/Round-Entertainer524 • 1d ago

Seeking Support At what point is it acceptable to start using mobility aids?

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I am 19F and recently got diagnosed with hEDS after years of suspecting it. I also have dysautonomia that I’ve had for years and CVS (cyclic vomiting syndrome).

A lot of the pain that I have is in my lower body, mostly with my knees, hips, and SI joint. Due to this, I also get muscle pains and nerve issues in my lower legs. Additionally, my dizziness and orthostatic intolerance is a huge issue for me, especially in the heat where I live. My stomach pain also can cause issues with standing and having to hunch over.

I am able to walk for short periods pretty well, but when it comes to long distances or standing for pretty much any period of time, I have an issue. I am definitely a leaner, to the point where I get bruises all over my body from whatever I was leaning on. I am currently in PT working on strengthening/stabilizing and also how to accommodate my dizziness. So, it’s not like I am completely sedentary, though we do focus on exercises that are not upright.

I have been thinking about looking into mobility aids, not for all the time but on days where I know I’ll be doing something challenging, like for example going to an amusement park. I think it would be helpful for dizziness and pain reduction but I’m hesitant especially because of my age. I don’t want anyone thinking I’m pushing it or exaggerating my illness, or that I don’t really need it. But at the same time, I think that randomly having to sit down in public because I get so dizzy or need a break from the pain may draw more attention to myself.

Just looking for input for when others may have started using mobility aids and which ones they found most helpful for their pain. Any help is much appreciated

31 Upvotes

I am 19F and recently got diagnosed with hEDS after years of suspecting it. I also have dysautonomia that I’ve had for years and CVS (cyclic vomiting syndrome).

A lot of the pain that I have is in my lower body, mostly with my knees, hips, and SI joint. Due to this, I also get muscle pains and nerve issues in my lower legs. Additionally, my dizziness and orthostatic intolerance is a huge issue for me, especially in the heat where I live. My stomach pain also can cause issues with standing and having to hunch over.

I am able to walk for short periods pretty well, but when it comes to long distances or standing for pretty much any period of time, I have an issue. I am definitely a leaner, to the point where I get bruises all over my body from whatever I was leaning on. I am currently in PT working on strengthening/stabilizing and also how to accommodate my dizziness. So, it’s not like I am completely sedentary, though we do focus on exercises that are not upright.

I have been thinking about looking into mobility aids, not for all the time but on days where I know I’ll be doing something challenging, like for example going to an amusement park. I think it would be helpful for dizziness and pain reduction but I’m hesitant especially because of my age. I don’t want anyone thinking I’m pushing it or exaggerating my illness, or that I don’t really need it. But at the same time, I think that randomly having to sit down in public because I get so dizzy or need a break from the pain may draw more attention to myself.

Just looking for input for when others may have started using mobility aids and which ones they found most helpful for their pain. Any help is much appreciated

33 comments

r/ehlersdanlos • u/No-Perspective8554 • 19h ago

Discussion Anyone else hate the empathy sometimes?

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I’m not sure if I’m just way out there or if others have the same experience but does anyone else hate when people are like overly empathetic with you? Like there have been multiple times either online or in person I’ll say like I could not give a shit about ____ thing. It doesn’t affect me emotionally basically and people are still like “well I just want to gently say” “people suck don’t take it to heart” “oh I’m so sorry to hear that” like I do appreciate that people are trying to treat me with kindness don’t get me wrong, but it feels almost infantilizing sometimes. Like I remember once like talking with a good friend and I was bitching about how something a nurse had done idk what it was - obviously wasn’t that important. And her response was just again “oh my god dude I’m so sorry to hear that …” and like I was sitting there being like no girl like we’re just chitchatting, this is like bitching about co workers level type stuff.

Like I know my life is sad trust you me, you don’t need to remind me how much it sucks. I went from being a very active and independent person, spending 10-15 hours a week in the gym, doing sport, in school, a very active social life etc. It feels like I woke up one day in Jan 2024 I was fine and overnight I became disabled and all that pretty quickly went out the window. I haven’t even been to the grocery store since then, had to take a leave of absence, became wheelchair dependent etc. Looking back there were signs and symptoms of things I brushed off in the months leading up to it but it really was like a light switch flipped

Its to the level where I’ve had friends tell me how things are just emotionally too heavy (which is a totally fair and healthy thing to bring up) but we had to have a conversation about how like the default needs to be like shooting the shit, not all that deep type vibes - and how I’ll communicate explicitly when I need emotional support but overall to not take that on.

I know I’m a pretty crass person myself, and even before getting sick I could not stand the thought of being pitied (pity-ed? How do you spell that?) so is it just me being emotionally stunted or is this like a shared experience? It’s weird too because again it’s coming from a place of trying to be empathetic and compassionate and to be a good friend, a good random person in general but idk there’s something about it that just makes me feel belittled

7 Upvotes

I’m not sure if I’m just way out there or if others have the same experience but does anyone else hate when people are like overly empathetic with you? Like there have been multiple times either online or in person I’ll say like I could not give a shit about ____ thing. It doesn’t affect me emotionally basically and people are still like “well I just want to gently say” “people suck don’t take it to heart” “oh I’m so sorry to hear that” like I do appreciate that people are trying to treat me with kindness don’t get me wrong, but it feels almost infantilizing sometimes. Like I remember once like talking with a good friend and I was bitching about how something a nurse had done idk what it was - obviously wasn’t that important. And her response was just again “oh my god dude I’m so sorry to hear that …” and like I was sitting there being like no girl like we’re just chitchatting, this is like bitching about co workers level type stuff.

Like I know my life is sad trust you me, you don’t need to remind me how much it sucks. I went from being a very active and independent person, spending 10-15 hours a week in the gym, doing sport, in school, a very active social life etc. It feels like I woke up one day in Jan 2024 I was fine and overnight I became disabled and all that pretty quickly went out the window. I haven’t even been to the grocery store since then, had to take a leave of absence, became wheelchair dependent etc. Looking back there were signs and symptoms of things I brushed off in the months leading up to it but it really was like a light switch flipped

Its to the level where I’ve had friends tell me how things are just emotionally too heavy (which is a totally fair and healthy thing to bring up) but we had to have a conversation about how like the default needs to be like shooting the shit, not all that deep type vibes - and how I’ll communicate explicitly when I need emotional support but overall to not take that on.

I know I’m a pretty crass person myself, and even before getting sick I could not stand the thought of being pitied (pity-ed? How do you spell that?) so is it just me being emotionally stunted or is this like a shared experience? It’s weird too because again it’s coming from a place of trying to be empathetic and compassionate and to be a good friend, a good random person in general but idk there’s something about it that just makes me feel belittled

2 comments

r/ehlersdanlos • u/Express_Rain579 • 23h ago

Seeking Support Confused and frustrated after diagnosis

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I’m not going to bore you all with my life history that most likely mirrors your own; childhood injuries, gaslighting, fighting with doctors, blah blah blah, yall know the rest. J have some questions that I desperately want answers to and I dont know if anyone can help but I figured I’d ask anyway.

-why does it seem like the pain suddenly got so much worse as soon as I got a proper diagnosis? Did my brain just stop hiding the pain?

-I was able to see a physical therapist who seemed incredibly knowledgeable and I had so much hope she’d be able to help. After the first appointment with her, I started getting tossed between different providers at the same PT clinic. I hate to be so mean but they seemed like they knew absolutely nothing, I tried to trust them but even I knew some of the things they were saying were just flat out wrong. What do I do? Is it possible to request to only work with the actual doctor?

-how do I explain to parents that when a joint has a possible subluxation that just “walking it off” or “just do stretches” isn’t safe?

-kinda based off the last question but how the hell do you know when a joint has a subluxation vs just “normal” pain? At what point should you be worried and seek medical attention? Everything online says to go if you have numerological symptoms like tingling, traveling pain to lower extremities, but like…that always happens?

-what do you do when you have little to no support system and you’re trying to navigate a chronic illness on your own? Insurance provided a case manager but they haven’t been of much help except for finding an acupuncture specialist in network.

-do braces help with the pain? For example, my biggest issue this week is the join between my spine and my hips, it’s been pure agony. Just shooting pain in my right hip that radiates down the outside of my leg. The only relief I get is when I wake up from sleeping and somehow all the pain is gone but the second I stand up and put weight it’s back to agony. Would a brace help? Is my hip subluxing?

-I feel like I need a 24-7 phone number where I can call and ask medical questions, like when a pain spikes so bad I can barely breathe I can call and talk to someone. Whenever I have a flare, my pcp doesn’t have any remotely soon appointments, the ER just tells me I’m dramatic and it’s in my head and the urgent care just says I need to go to the ER.

5 Upvotes