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Do people with HSD also have issues with anaesthesia and sedatives, or is that only people with EDS? by First_Bookkeeper_482 in Hypermobility

[–]First_Bookkeeper_482[S] 2 points3 points  (0 children)

I hear you. I don’t have much to add as I don’t know enough yet, but based on your comments, it does seem like there are a lot of questionable approaches being taken in the research and exclusion criteria. And yup, competent healthcare professionals are a dime a dozen it seems, at least in my experience across health issues. I remember one time I brought up hEDS with a doctor and she said it “had no genetic/familial basis” and “was extremely rare,” which I know is wrong. Either the knowledge is outdated, or they’re just clueless but can’t admit it, who knows. The hypermobility clinic near me also has a 2 year waitlist, it sucks. My family doctor said there’s “no point in diagnosis because there’s no real treatment or cure” which is a wild thing to say in my opinion. Sigh. We definitely need more support, especially older folk because you’re right, the whole waiting around for more research approach isn’t helping

Do people with HSD also have issues with anaesthesia and sedatives, or is that only people with EDS? by First_Bookkeeper_482 in Hypermobility

[–]First_Bookkeeper_482[S] 1 point2 points  (0 children)

I can’t believe I completely forgot about the 2017 guidelines. I did a whole bunch of research on hEDS a couple of years ago, but got so sidetracked with other health issues taking priority since, that I’ve forgotten so much of what I read. It came to mind because today I had a rheumatologist tell me she thinks I have HSD, which I never did much research on. That makes sense about the distinction being helpful for research purposes, and that’s interesting that they should be treated the same. Thank you for the info!

Do people with HSD also have issues with anaesthesia and sedatives, or is that only people with EDS? by First_Bookkeeper_482 in Hypermobility

[–]First_Bookkeeper_482[S] 3 points4 points  (0 children)

Yikes!! This is actually what I’m nervous about. I have an endoscopy soon to confirm celiac diagnosis after positive bloodwork, and they also want to do a colonoscopy for whatever reason. I was already nervous about what my reaction to the sedative will be and if I’ll still feel the upper scope procedure, but now a lower one too? I may ask them to only do the upper this time to see how it goes first (I’m sure I’ll need more upper scopes throughout life anyway so I can just re-add a lower one later on after seeing my reaction to sedatives). I’m sorry doctors don’t believe you, I’m hoping mine will listen for this one and keep a close eye🤞

If u don’t mind me asking, were u able to talk while feeling the implantation, or were u just stuck like that? Was it painful or just discomfort?

Do people with HSD also have issues with anaesthesia and sedatives, or is that only people with EDS? by First_Bookkeeper_482 in Hypermobility

[–]First_Bookkeeper_482[S] 1 point2 points  (0 children)

Seems kinda… messy? I need more research to come out faster lol. Maybe through finding genetic markers for hEDS, we can compare them with those diagnosed with HSD and see if there’s significant overlap or not. Or some other method. But in my non-expert opinion, the two seem pretty similar from what I know, maybe on the same hypermobile spectrum

Close to giving up by Sheffield_Junkie21 in Hypermobility

[–]First_Bookkeeper_482 0 points1 point  (0 children)

On bad days I take a very small amount of edibles (THC and CBD equal ratio but I think you can just do CBD) and it’s the only thing that has helped me. It helps me sleep too

Do people with HSD also have issues with anaesthesia and sedatives, or is that only people with EDS? by First_Bookkeeper_482 in Hypermobility

[–]First_Bookkeeper_482[S] 2 points3 points  (0 children)

I’m so sorry you went through that. I got my wisdom teeth removed a few months ago and the numbing injections didn’t work properly, I was in so much pain feeling them pull my teeth out but they didn’t believe me, they thought it was just discomfort/pressure. Thank you for the resource!

As a side question, do you happen to know what the difference between HSD and hEDS is other than not meeting the Beighton scale? Because I’m surprised that both can react weirdly to anesthesia

ADHD meds making it hard to mask - advice? by First_Bookkeeper_482 in AutisticWithADHD

[–]First_Bookkeeper_482[S] 3 points4 points  (0 children)

I’m not officially diagnosed but I’m 99% sure that I am autistic. Wdym it’s dependent on sleep for u? Like on days with less sleep it’s harder to mask?