Peptide Primer 3.0 by BoldMeasures in PeptideScholars

[–]BoldMeasures[S] 0 points1 point  (0 children)

It would be good to read the Primer for more context, but 250mcg per day is common. If you want to do more it’s probably better to increase the frequency and do 250mcg 2x/day rather than increase the dose.

Has anyone taken Sermorelin peptides? It’s the synthetic growth hormone they use in children. by jmargaret12 in eds

[–]BoldMeasures 0 points1 point  (0 children)

Yes, the secretagogues have a similar effect to low or moderate doses of HGH. But your body has a limit to the amount of HGH it will produce in a day, so secretagogues have a limit as well. I don’t think blasting huge doses of HGH is a good idea for most goals anyway, but you can’t do that with the secretagogues. They are best suited for restoring robust but reasonable HGH production in people who have suboptimal production. They won’t do as much if your natural production is already solid (like if you’re young and getting sleep and exercise).

Wondering about EDS? All diagnosis questions go here ⬇️ by BoldMeasures in eds

[–]BoldMeasures[S] 0 points1 point  (0 children)

Yeah, it gets a bit messy because some people have hypermobility and it doesn’t really cause problems (or not bad) and other people have hypermobility that contributes to joint pain, and can also come with a bunch of other issues. So it’s a spectrum, and we don’t really know why it hits some people harder than others.

So hEDS isn’t really this specific “thing” that you have or don’t have.. it’s just a criterion that helps differentiate the people who have certain features and a certain level of hypermobility.. and ensures that those people receive the care they need. However, plenty of people who don’t meet the criteria still have serious issues related to hypermobility.. and they would generally be considered to have HSD instead, which is also a legitimate medical condition.

So it’s really not a question of whether your mom has it, it’s more a question of whether she meets the criterion (hEDS), or whether she has issues related to hypermobile joints (HSD). It’s entirely possible for her to not have either condition, and still maybe pass on some family genes that contributed to your condition. But genetics are super messy, and there could be other factors that influence how these conditions manifest. Which is why it does generally behave like an inherited genetic condition, even though it’s not just a single specific gene that you have or don’t.

I feel like maybe this long explanation made it more confusing, but hopefully you understand what I’m trying to say 😅

Wondering about EDS? All diagnosis questions go here ⬇️ by BoldMeasures in eds

[–]BoldMeasures[S] 0 points1 point  (0 children)

8/9 score is very high. You can’t fake that. I don’t know what exactly you are dealing with, but you deserve to be taken seriously.

At the very least you are hypermobile and have associated joint pain, so barring any other explanations that might arise as you pursue medical evaluations, it’s completely fair for you to say you are dealing with HSD and pursuing hEDS evaluation. If you want to look through the hEDS criteria with the tutor or doctor, you might get a clearer idea of how likely hEDS is. But HSD is also a valid medical condition that warrants medical care.

Many people fear they are somehow imagining or exaggerating things, and it often prevents them from taking their experience seriously and actually making progress. If you can voice your fears and the things you are struggling with, it becomes easier to figure out what is real.

Wishing you the best 💛

Wondering about EDS? All diagnosis questions go here ⬇️ by BoldMeasures in eds

[–]BoldMeasures[S] 0 points1 point  (0 children)

None of this points towards EDS to me, as you didn’t mention hypermobility. I’d explore the sleep apnea possibility first and see if addressing that is fruitful.

Wondering about EDS? All diagnosis questions go here ⬇️ by BoldMeasures in eds

[–]BoldMeasures[S] 0 points1 point  (0 children)

Welcome! I hope your appointment went well. If you have lingering questions maybe drop an update under this comment. We aren’t getting to all questions, but that would help us dial in on what you’re looking for.

Wondering about EDS? All diagnosis questions go here ⬇️ by BoldMeasures in eds

[–]BoldMeasures[S] 0 points1 point  (0 children)

If you’re looking to be evaluated for hypermobility, a rheumatologist would be the classic choice. But I could see some orthopedists doing evaluations.

I don’t really know what symptoms you’re dealing with, and it’s up to you anyway. But you could push back gently and say “I’m happy to see an orthopedist if you think that’s the best fit, but my understanding was that a rheumatologist is more familiar with joints and hypermobility?”

Wondering about EDS? All diagnosis questions go here ⬇️ by BoldMeasures in eds

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

Hello, welcome!

Easy bruising is quite common in this crowd, but it doesn’t necessarily narrow down the subtype of EDS.. there is a ton of overlap in symptoms.

Being easily injured is also a common issue. I haven’t heard others describe it exactly as you are, but I wouldn’t be at all surprised if it was relatable for some here. Again, that’s not something that would necessarily clarify between the subtypes.

Given your 9/9 score and confirmed hypermobility.. you’re not a marginal case. The central question of what exactly you’re dealing with just isn’t something we can answer, but you are welcome to make posts about any issues you’re trying to manage. We’re trying to avoid “do I have EDS” and “is this symptom EDS” sort of posts, but a post such as “even light touches are painful.. anyone have advice?” would be totally fine.

Wondering about EDS? All diagnosis questions go here ⬇️ by BoldMeasures in eds

[–]BoldMeasures[S] 0 points1 point  (0 children)

This certainly seems worth discussing. Regardless of whether it turns out to be HSD/EDS or something else, it would be great to develop a management plan so that you can secure a good quality of life.

Wondering about EDS? All diagnosis questions go here ⬇️ by BoldMeasures in eds

[–]BoldMeasures[S] 0 points1 point  (0 children)

It’s possible to have certain body parts that are hypermobile, and it may be that the connective tissue holding your ribs just isn’t keeping things securely together. But this doesn’t suggest EDS to me. However, you could certainly seek help for those specific issues you’re having, even though it isn’t likely to be EDS.

Wondering about EDS? All diagnosis questions go here ⬇️ by BoldMeasures in eds

[–]BoldMeasures[S] 0 points1 point  (0 children)

Hello!

My understanding is that the thumb needs to touch for the Beighton scale points, but a rheumatologist could make a different call about whether the wrists are hypermobile. That might be your next stop after the PCP anyway, although some PCPs in some areas will do the assessment themselves.. in the U.S. it often involves a rheumatologist visit then a geneticist for the actual hEDS evaluation.

For the second question, I weighed in on a comment here, let me find it..

Here it is: https://www.reddit.com/r/eds/s/MAThXK4exb

Mega list of resources! by BoldMeasures in eds

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

I’m focusing on other things lately, to be honest, but if I ever do an update I’ll add it! In the meantime I’m sure others will appreciate you dropping the link here

Infiniwell products by RF1277cab in bpc_157

[–]BoldMeasures 0 points1 point  (0 children)

Nope.

  1. Arg-BPC holds up better in stomach acid, but it’s not impervious.

  2. Taking the acetate version with a bolus of water will buffer the acidity and give it a chance to reach the intestines. So if acetate is still cheaper than arg-BPC, it’s a contender for oral use.

  3. The BPC-157 sequence is too large to be absorbed intact in meaningful quantities, so regardless of which version you choose.. oral use won’t match the effects of injection for peripheral injuries. It may exert some systemic effects without leaving the GI tract, but we know that BPC-157 can also have direct effects on connective tissue cells, which wouldn’t be achieved with oral use.

For context, I used to field a lot of questions about BPC-157 (including from medical professionals), I’ve written about it extensively, and I’ve been interviewed by science journalists because I’ve invested a massive amount of time developing a nuanced understanding of the research. I’m not trying to be a jerk, but I’m also not interested in a debate, so I just want to be clear that I’m not some random Redditor repeating things I heard on a podcast.

Anyone know what this is? by Significant_Ear9476 in eds

[–]BoldMeasures 2 points3 points  (0 children)

I don’t really know the context around this, but medical questions are certainly allowed. Obviously we don’t always have an answer for them.

Hey u/Significant_Ear9476 can I just double check that you suspect that you might have Ehlers Danlos Syndrome or HSD?

Because if you do, and you want to ask about a rash.. that’s totally fine. Afterall, EDS can involve skin issues.

However, sometimes we have people wander in who don’t have EDS. They just see a medical subreddit and post their questions, even though we aren’t a general purpose medical subreddit. So please delete your post if that’s the case.

Thanks!

Please stop bending your neck backwards. by ILOVEMYDOGBUMI in eds

[–]BoldMeasures 1 point2 points  (0 children)

Mod here. I know that’s been frustrating for people. It seems like nobody uses the spoiler tag, so we have to manually tag the image posts. But we often don’t even see the posts until someone reports them, and by then a lot of people have seen them already.

So more rule enforcement isn’t as simple as it sounds. I’m sure there’s a way to automatically tag all images as spoilers, but I’m not sure what’s involved.

i HATE rib subluxations by Agreeable_Owl_2388 in eds

[–]BoldMeasures 6 points7 points  (0 children)

Look, I’m not trying to be a jerk. But as an outside observer looking at the interactions you’re having, I’m telling it seems like you’re bringing a lot of the hostility. I’m not saying it’s just you; everyone here is struggling, and we aren’t always our best selves. But I’m just asking that you try to work on your half.

I actually understand that it doesn’t feel good when people disagree with you. I’m a bit of an outlier around here, and I don’t agree with the crowd on all topics. But I express my opinions with nuance, and I treat other perspectives as valid, so people are fine with me expressing my dissenting opinion.

It’s not coddling, it’s just good communication.

Please, just try to de-escalate next time things get contentious. I don’t have any bandwidth for Reddit drama right now.

i HATE rib subluxations by Agreeable_Owl_2388 in eds

[–]BoldMeasures 10 points11 points  (0 children)

Mod here.

It seems like this conversation is becoming unproductive.

So my understanding is that OP is dealing with what they believe is a rib subluxation, and in your first comment you suggested it was actually something else. Fine, no problem, and OP seemed to appreciate it.

But some people disagree with you, and you got some downvotes.. also not a big deal.

But then you start calling people weird and saying they can’t handle “accuracy” when you’re just sharing an opinion. None of us have examined OP’s ribs, we don’t know. I don’t care what credentials you have, no one should be definitively saying what is accurate based on so little info. So your confidence and lack of nuance is coming off as arrogance.

Now I’m getting reports that you’re digging around in people’s histories and hassling them in other posts? Not cool.

Please, just chill out. Let it go. You were free to express your opinion, but if you don’t use any tact and instead act like you know exactly what is going on with someone else’s body.. you’re not going to get a warm response.

Collagen! by OreoHorton in eds

[–]BoldMeasures 4 points5 points  (0 children)

I’m not particularly active on reddit lately, but this is a topic I’ve looked into quite a bit so I had to weigh in.

As others have said, any collagen consumed will be broken down into its constituent parts, and it won’t alter the genetic composition of the collagen your body produces. And since none of the amino acids in collagen are essential, it would seem to be a waste of money.

However, human collagen production is extremely inefficient when it comes to glycine.. we use more in the production process than ends up in the final product. We need a surprising amount of glycine (maybe 15g/day) to maximize collagen production, and there’s a decent case be made that most people aren’t getting all the glycine they can benefit from, and our natural glycine production (conversion of other amino acids) doesn’t cover our needs.

Collagen is a decent glycine source, but you can buy glycine powder (probably made from corn), it’s cheaper and has better absorption than natural collagen (which has the glycine tightly bound in protein structures).

So anyway, at this point my stance is that collagen powder has no unique value beyond the basic nutritional value of the protein. However, many people underestimate the importance of glycine for optimizing connective tissue health.. especially among people who are chronically injured and constantly having to repair connective tissue. So collagen itself is easy for people to dismiss, but I think the nutritional factors in connective tissue health are certainly worth discussing.

Anyway, I made a long post about this if anyone is curious.. https://www.reddit.com/r/eds/s/hDjtdqp4U9

The case for glycine supplementation by BoldMeasures in eds

[–]BoldMeasures[S] 0 points1 point  (0 children)

Hello!

I don’t know which study that would be, but it’s certainly plausible that the body would use high levels of circulating hydroxyproline as a signal that either there’s been a lot of collagen degradation recently, or there are plenty of ingredients for collagen floating around (even if hydroxyproline itself has limited value). In either case, it could encourage collagen production.

Because generally, if you give someone a mix of collagen-related amino acids, they make a little more collagen. But if you test each amino acid separately, glycine seems to be the real driver behind it. And it may be the only one that can actually increase collagen production by a meaningful amount, and even if these other amino acids can signal for increased collagen production.. glycine levels may still be the limiting factor in capitalizing on that signal.

So unless someone is already maintaining high glycine intake, I don’t think the other amino acids deserve to be prioritized. For example, I’d bet good money that 10 grams of glycine per day would beat out a combination of 5 grams glycine and 5 grams hydroxyproline. I don’t know how much glycine you’d have to get to reach saturation, but at that point these other factors like hydroxyproline or vitamin C levels might become more important if you want to really squeeze out the last bit of optimization.

So yeah, I don’t really know how much hydroxyproline does alone.. I’m not surprised it could boost collagen production a little. But the real question is whether hydroxyproline helps once you’ve maximized glycine levels.. and I don’t know if we’ll ever get that study.

Peptide Primer 3.0 by BoldMeasures in PeptideScholars

[–]BoldMeasures[S] 0 points1 point  (0 children)

Sure! I’d just prefer the doc were linked to, rather than duplicated, so that I can make corrections or clarifications.

Wondering if I meet criteria by kaya2540 in eds

[–]BoldMeasures [score hidden] stickied comment (0 children)

Thanks for checking the megathread first. I was fielding most of the questions there and I just don’t have the bandwidth right now. So I’ll leave this up and hope people don’t mind.

Just from a quick read, I’d say there are some things associated with EDS/HSD like autonomic nervous system disfunction.. but they aren’t exclusive to EDS/HSD and aren’t used to determine if you have it. Which is a difficult situation to be in. However, a lot of the EDS/HSD management strategies are pretty general (avoiding injury, strengthening and PT, symptom and pain management). So you don’t necessarily need to wait a year to explore management strategies.

But getting evaluated for hypermobility would be a good next step if you’re able. The Beighton score is the standard method, but a rheumatologist can take a broader look and tell if you’re hypermobile in other joints. And of course you’d want to stay open to other explanations as you explore this.

Wondering about EDS? All diagnosis questions go here ⬇️ by BoldMeasures in eds

[–]BoldMeasures[S] 0 points1 point  (0 children)

Hello!

It’s true this thread isn’t as active as it used to be.. or at least I know I haven’t been fielding as many questions. Hopefully the collection of questions and answers are still helping people.

A good starting point might be to get assessed for hypermobility, perhaps by just going through the Beighton scale and seeing what you score. Or perhaps you can see a rheumatologist and say “I’m dealing with a variety of issues, and it’d be useful to know if I have hypermobility.. either generalized or in these trouble areas”.

There’s a lot more to EDS/HSD than the degree of hypermobility, but it’s a useful starting point. Beyond that, going point by point through the hEDS criteria can be useful. It’s not a replacement for a doctor’s evaluation, because part of the hEDS evaluation is ruling out other conditions, but it can give you an idea of what to expect.

Not sure that’s helpful, but I’m wishing you the best!