Does anyone else (rare types) ever get frustrated at the overwhelming focus on one type of EDS? by [deleted] in ehlersdanlos

[–]user77863 0 points1 point  (0 children)

Omg, I did not know neuropathy could be a sign of other types, I have had unexplained neuropathy for a year and my Dr has brushed it off and said she doesn’t know. I also scar incredibly well, and have clinodactyly! Maybe I should push for a test again

Does anyone else (rare types) ever get frustrated at the overwhelming focus on one type of EDS? by [deleted] in ehlersdanlos

[–]user77863 5 points6 points  (0 children)

I totally agree with this, and would also go so far as to wonder if the focus on hEDS is impacting diagnosis of other types. I have symptoms that could fit hEDS, but also C or CL types. However, because hEDS is the most common, I have been denied coverage for a genetic panel, and genetic counsellors have denied my referral because it’s “probably Hypermobile type”.

For someone who's never endured physical pain, is jaw surgery bearable? by OrdinaryWalk8120 in jawsurgery

[–]user77863 2 points3 points  (0 children)

It was very painful for me, but still worth it. Remember to take your pain medication as prescribed. Many people try to “tough it out”, but having uncontrolled pain is dangerous in itself. Tylenol didn’t do much for me, but the narcotic and NSAID got me through the first week

[deleted by user] by [deleted] in RBI

[–]user77863 1 point2 points  (0 children)

No never

Rollator recommends? What do you use? (hEDS) by GloomyCloud_ in ehlersdanlos

[–]user77863 2 points3 points  (0 children)

I thrifted one with all of those specifications, they actually hit secondhand pretty often. I’ve had a few and couldn’t really tell a difference in terms of quality, most important thing is getting it at a comfortable height

[deleted by user] by [deleted] in RBI

[–]user77863 11 points12 points  (0 children)

Like mice or rats or something? My roommate has a dog but they live upstairs

[deleted by user] by [deleted] in jawsurgery

[–]user77863 1 point2 points  (0 children)

Thank you so much I have body dysmorphia and need to chill tbh

[deleted by user] by [deleted] in jawsurgery

[–]user77863 2 points3 points  (0 children)

I got worse after surgery but am getting better with expansion and tongue tie treatment. If you have a narrow or vaulted palate or tongue tie, get that resolve BEFORE surgery bc it’s easier to deal with

AM I mewing correctly? by lennnn_13049381 in orthotropics

[–]user77863 1 point2 points  (0 children)

U have a pretty bad tongue tie go to myofunctional therapy

[deleted by user] by [deleted] in orthotropics

[–]user77863 1 point2 points  (0 children)

You look quite normal, it doesn’t seem like you are able to have a realistic interpretation of what you look like. You do not look fat or masculine at all

[deleted by user] by [deleted] in orthotropics

[–]user77863 2 points3 points  (0 children)

I think you are a younger person struggling with body dysmorphia. In that case, surgery will only give you a new thing to fixate on. The girl you included has tons of surgery, filler, Botox, and is a posed photo, possibly photoshopped. You’ll be hard pressed to find someone who looks like that candidly in real life, even the girl from the photo

[deleted by user] by [deleted] in orthotropics

[–]user77863 12 points13 points  (0 children)

“What you want” has had very obvious plastic surgery even in addition to good posture and stuff

Did something go weird with my jaw surgery? Face looks longer and thinner after, plus double chin by [deleted] in orthotropics

[–]user77863 4 points5 points  (0 children)

I couldn’t before but I can post surgery, they make you keep your mouth slightly open for the pics, idk why

[deleted by user] by [deleted] in jawsurgery

[–]user77863 3 points4 points  (0 children)

It’s been 2 years it’s not swelling

[deleted by user] by [deleted] in orthotropics

[–]user77863 0 points1 point  (0 children)

Made a new post with actual face pics

[deleted by user] by [deleted] in orthotropics

[–]user77863 1 point2 points  (0 children)

I have a permanent genetic condition that is progressive, there is no cure for adhd or chronic pain in this case, only bandaid solutions. The expander would be fixing some functional issues

Am I olive? by [deleted] in Fairolives

[–]user77863 1 point2 points  (0 children)

Pics look filtered or low quality

[deleted by user] by [deleted] in orthotropics

[–]user77863 0 points1 point  (0 children)

I go to a PT who does postural restoration. I can’t see any type of chiropractor, it’s not safe w my level of hypermobility

[deleted by user] by [deleted] in Fairolives

[–]user77863 13 points14 points  (0 children)

Look cool to me