Ehlers-Danlos Syndrome and Peptides

[bibson]

After some significant flaring of dysautonomia (very likely POTS,) lifelong hypermobile weirdness and injuries, and a laundry list of symptomology, I'm in the process of getting diagnosed with Ehlers-Danlos Syndrome. My body feels like it's falling apart a bit and I'd like to slow the dominoes falling as much as I can.

I was wondering if anyone here has EDS/a connective tissue disorder, and if any peptides have helped in treatment or preventative care . I'd immediately think GLOW/KLOW and other peptides that help the uptake of collagen might have some effect, but EDS has so many negative quality of life effects that I imagine there may be other peptides that help as well.

Anyone have experiences or thoughts to share? Thanks!

 

[data259]

I'm very interested in this topic too. My sister has some sort of auto-immune condition going on with elevated ANA numbers, and it also seems to have to do with connective tissues, but I don't think she has actually received the EDS diagnosis. They're still trying to pin it down. But I was telling her about KPV and KLOW and what I have been reading about them. She is interested but we'd like to know if someone else has had any experience using them.

 

[bibson]

I'm very interested in this topic too. My sister has some sort of auto-immune condition going on with elevated ANA numbers, and it also seems to have to do with connective tissues, but I don't think she has actually received the EDS diagnosis. They're still trying to pin it down. But I was telling her about KPV and KLOW and what I have been reading about them. She is interested but we'd like to know if someone else has had any experience using them.

I'm doing genetic testing to confirm diagnosis myself - depending on the variant, it's a real pain to get the DX, good luck to her.

I actually did run a brief KLOW cycle for 2-3ish weeks but stopped due to an emergency move that messed up all my peptide routines (and the stress of which caused the flare!). In the time I used it I found that most of the stretch marks that cover quite a bit of my body (another fun EDS trait!) faded significantly, and that was without additional collagen uptake. About to get settled into my new place and I have a ton of gelatin + collagen supplements that I'm gonna be using on top of KLOW to maximize my body's ability to actually use collagen. I think I'll keep a log of the effects and take pictures of current scarring/note of current EDS issues before I hop back on. Might as well pass on what I learn if I'm gonna be a lab rat!

 

[conzopiriani]

Exceedingly interested and will be following your journey.

 

[Higgybaby]

After some significant flaring of dysautonomia (very likely POTS,) lifelong hypermobile weirdness and injuries, and a laundry list of symptomology, I'm in the process of getting diagnosed with Ehlers-Danlos Syndrome. My body feels like it's falling apart a bit and I'd like to slow the dominoes falling as much as I can.

I was wondering if anyone here has EDS/a connective tissue disorder, and if any peptides have helped in treatment or preventative care . I'd immediately think GLOW/KLOW and other peptides that help the uptake of collagen might have some effect, but EDS has so many negative quality of life effects that I imagine there may be other peptides that help as well.

Anyone have experiences or thoughts to share? Thanks!

I have a laundry list as well. Dx'd with hyper pots, and hypermobility.My rheumatologist blew me off when I asked for testing for eds. I'll likely pursue this on my own at some point. I'm also HLA B27 positive, and suffer from a lot of inflammatory pain.

Still researching over here, not finding all the answers quite yet, but starting to feel better in a lot of areas.

 

[bibson]

I have a laundry list as well. Dx'd with hyper pots, and hypermobility.My rheumatologist blew me off when I asked for testing for eds. I'll likely pursue this on my own at some point. I'm also HLA B27 positive, and suffer from a lot of inflammatory pain.

Still researching over here, not finding all the answers quite yet, but starting to feel better in a lot of areas.

I am going directly to a labcorp clinic just so I don't have to deal with convincing a doctor to care about me; unfortunately EDS is poorly understood in the medical field; I was talking to a relative who has been a doctor for 30+ years and he thought it wasn't possible for me to have EDS due to not having a Marfan-like body type (i am quite stocky, basically opposite), except that only appears in 1 of the 13 types! He had no idea.

I hope you find your answers, glad to have some camaraderie in shared question marks. Interested to hear if youre exploring any immune-modulating/anti-inflammatory peptides for the HLA B27.

 

[Higgybaby]

I am going directly to a labcorp clinic just so I don't have to deal with convincing a doctor to care about me; unfortunately EDS is poorly understood in the medical field; I was talking to a relative who has been a doctor for 30+ years and he thought it wasn't possible for me to have EDS due to not having a Marfan-like body type (i am quite stocky, basically opposite), except that only appears in 1 of the 13 types! He had no idea.

I hope you find your answers, glad to have some camaraderie in shared question marks. Interested to hear if youre exploring any immune-modulating/anti-inflammatory peptides for the HLA B27.

I agree, we have a lot we can learn from one another. I absolutely think it's better to know the root cause and treat it vs slapping a bandaid over the problem. And good for you taking your healthcare seriously. I'm in the healthcare field, and try not to over generalize. There's a lot of people out there trying to help and they do care. Also, there's lots of reasons why healthcare providers don't pursue further testing. An NP once told me she would like to run some more labs, but she'd be reprimanded if she did. IMO the actual diagnosis (insert any condition here)would help, especially when there are subtypes. Also, physical therapy and strengthening to support hyper mobile joints seems to be a logical treatment with these diagnosis. Not just immunosuppressants and meds that wreck your kidneys. But most of us pay an outrageous amount for healthcare insurance, it would be nice to have it actually pay for something lol.

My friend has marfan like features and was tested right away, I know what you're saying here. There's a lot of ignorance about EDS, and a little knowledge can be your best friend

 

[YoYoFat]

I have EDS but all the peptides I’ve been interested in increase HGF and I’m scared of that.

 

[bibson]

I agree, we have a lot we can learn from one another. I absolutely think it's better to know the root cause and treat it vs slapping a bandaid over the problem. And good for you taking your healthcare seriously. I'm in the healthcare field, and try not to over generalize. There's a lot of people out there trying to help and they do care. Also, there's lots of reasons why healthcare providers don't pursue further testing. An NP once told me she would like to run some more labs, but she'd be reprimanded if she did. IMO the actual diagnosis (insert any condition here)would help, especially when there are subtypes. Also, physical therapy and strengthening to support hyper mobile joints seems to be a logical treatment with these diagnosis. Not just immunosuppressants and meds that wreck your kidneys. But most of us pay an outrageous amount for healthcare insurance, it would be nice to have it actually pay for something lol.

My friend has marfan like features and was tested right away, I know what you're saying here. There's a lot of ignorance about EDS, and a little knowledge can be your best friend

Most certainly there are a lot of providers who care, I'd argue is a very solid majority. It's unfortunately not feasible to be informed on everything that could be up with the human body, too many weird things that go on. The only issues that feel like "not caring" come to a head with human nature/logical fallicies when providers are like "I've never seen x before, so it cant be x," or things like that. I've been to a neurologist whose conclusion was "the brain is just weird sometimes! Nothing we can do, there's no reason to test you for anything" and the second opinion offered a ton of options - stuff like that is where it can be really frustrating. I had a really great PCP who was willing to look into options for subjects he wasn't familiar with but unfortunately my insurance dropped the entire healthcare network my care team is affiliated with quite a lot of shopping around to be done.

I've been bodybuilding throughout the years, and unfortunately my boulder shoulders haven't kept them from going wonky out of the sockets - I think PT and learning how to actually physiological address the issue would be excellent. I'm pretty uninformed regarding joint strengthening. Just had a conversation with a geneticist yesterday and will be getting a panel of connective tissue disorder genes tested, including EDS, plus some genes for familial neuropathy. It's a pain hEDS is the only one that can't get tested for genetically; if the gene testing is inconclusive then I think that my dislocation party tricks + aceing Beighton scale should get me some help pretty quick.

I have EDS but all the peptides I’ve been interested in increase HGF and I’m scared of that.

Growth factor boosting peptides also freak me out a bit, but due to a recent ER trip I got checked every which way for cancers and came up clear, so I feel like I have a bit of a window where my risk levels are quite low. I am on CJC+IPA along w KLOW that also has GF/angiogenic boosting properties. Is the cancer aspect the part that is causing concern, and also which peptides out of curiousity?

 

[bibson]

Started back up on my peps this week; taking KLOW, Reta, CJC+IPA, MOTS-C, L-Carn, along with Oxytocin Acetate/DSIP for sleep.

Been having really, really bad extensor tendonitis along with my typical upper back pain (my shoulders are almost always subluxed, and put a ton of stress on my upper back). Hoping the KLOW helps in resolving inflammation.

Getting back into working out as well.

 

[Foggy-Hollow]

Hi Friends. I am in a murky area (a foggy hollow?) where my family has a "Marfan-like" genetic variant. It's a molecule swap on the same gene but only 9 people are like us in the US database, so it's a big question mark. It's not EDS but we're cousins.

Health care providers have been an interesting bunch. We've been told that since we're in a gray area, the plan is to keep an eye on the aneurysms and treat symptoms as they come. I've come to terms with that - what else could I expect with a basically unknown condition? A few weeks ago, I got a mildly-pressured pitch to get ALL of us genetically tested (only one of 4 has) which: we have insurance but to what end? If the researchers want to pay for it, I'll donate. But selfishly, why pay for something that isn't going to help to diagnose or treat my family?

Don't get me wrong: I took an extra poke during a thyroid biopsy, for a study in Cali to improve the quality of thyroid tests. Half my thyroid followed a few weeks later. (Enjoy Cali, friends!)

I feel like I'm being short-sighted. But am I ?

I've been bodybuilding throughout the years, and unfortunately my boulder shoulders haven't kept them from going wonky out of the sockets - I think PT and learning how to actually physiological address the issue would be excellent.

I'll be interested in what you learn. I've lifted off and on over the years (heavy, fewer reps, a tad unusual for females) and I think it's helped a lot. Unfortunately I'm not EDS but I do feel like it's "held me together" in a sense. As I'm aging - pretty much menopausal - I can feel the laxity increasing. I'm starting to panic in a slow way... I'm getting new tendonitis-es. Maybe they'll have something to help you engage those boulder shoulders more to prevent the slippage?

My 80-yo dad - one of the 4 above - grew a bone spur around the cup of his shoulder. He had a physical job, and the dislocations caused the reaction in his joint. He's had shoulder replacements so it's no longer there. But I just 2+2 together now on why it happened. We thought it was due to his job at the time.

PTs are underrated in my opinion - they have SO many tools at their disposal, good ones are worth their weight in gold.

I have EDS but all the peptides I’ve been interested in increase HGF and I’m scared of that.

Can anyone enlighten me on why HGF is undesirable? Is it due to the the extra bone growth that already tends to happen?

 

[bibson]

Health care providers have been an interesting bunch. We've been told that since we're in a gray area, the plan is to keep an eye on the aneurysms and treat symptoms as they come. I've come to terms with that - what else could I expect with a basically unknown condition? A few weeks ago, I got a mildly-pressured pitch to get ALL of us genetically tested (only one of 4 has) which: we have insurance but to what end? If the researchers want to pay for it, I'll donate. But selfishly, why pay for something that isn't going to help to diagnose or treat my family?

I don't think it's selfish to want to be compensated for something that will take up your time - at the very least, there should be funds within whatever grant the researchers are working with to provision and cover those tests. You should also be informed of what is actually done with that information - no good IRB is going to let a study without rationale pass, and being informed is your right (of course double blind, placebo studies etc have certain caveats for being told what information is being studied, but this is quite straightforward.) Unfortunate that you condition is an anomaly - it is never, ever a good sign to be found interesting by geneticists (I did very recently a "fascinating!" from a geneticist I was consulting with, NOT a good sign.)

'll be interested in what you learn. I've lifted off and on over the years (heavy, fewer reps, a tad unusual for females) and I think it's helped a lot. Unfortunately I'm not EDS but I do feel like it's "held me together" in a sense. As I'm aging - pretty much menopausal - I can feel the laxity increasing. I'm starting to panic in a slow way... I'm getting new tendonitis-es. Maybe they'll have something to help you engage those boulder shoulders more to prevent the slippage?

My 80-yo dad - one of the 4 above - grew a bone spur around the cup of his shoulder. He had a physical job, and the dislocations caused the reaction in his joint. He's had shoulder replacements so it's no longer there. But I just 2+2 together now on why it happened. We thought it was due to his job at the time.

PTs are underrated in my opinion - they have SO many tools at their disposal, good ones are worth their weight in gold.

I'll absolutely relay whatever I learn - for the longest time I didn't even realize hypermobility was compatible with being musclebound (my muscles are so ridiculously tight that a podiatrist literally gasped when he was testing my calf mobility lol). But they're actually quite related - my muscles are constantly tightening to keep things from going wiggly on me, so I wonder if there's a way for them to support my joints without causing that extreme stiffness. Very excited to experience what PTs have to offer!

Can anyone enlighten me on why HGF is undesirable? Is it due to the the extra bone growth that already tends to happen?

Any growth factor that has an effect that ends in -genesis has some risk factors regarding cancers - angiogenic compounds, for example, boost the formation of new blood vessels. The downfall of this is that cancer LOVES being able to proliferate tumorous blood vessels with angiogenetic help. From the brief googling I have done on HGF, it can give a helping hand to quite a few cancers, which unfortunately is the same deal for a lot of tissue healing/generating peps.

 

[bibson]

Update on Peptides and Health - 10/22/25

So, I figured I should check in here whenever something interesting happens regarding my health, both because I love talking about myself and because it's good for documentation.

I have finally settled in to a new space after a very stressful move which had kicked off a lot of different health difficulties. Stress levels are significantly better now.

I have gotten back on the following peptides:

Retatrutide (2mg/week)

KLOW complex (3mg, daily)

CJC + Ipamorelin (200mcg morning + night, daily)

L-Carnitine (1000mg before workouts, daily)

MOTS-C (5mg, 3x/week)

I also take oxytocin, semax and selank but this thread is focusing more on the physical than the mental.

Getting back on KLOW immediately had notable effects on the cigarette-paper scarring that decorates my back, stomach, and shoulders/pecs. For a few days, the stretch marks were this inflamed-ish looking red, with no pain or anything, but then quickly turned back to my usual skin tone and began fading even more than they already had . Unfortunately gaining more scar tissue than I'm losing because I have gotten back into working out and therefore my muscle volume is getting back to where it was, and my skin is extremely unhappy about it and is making it known.

Recovery times from intense workouts have been really good - feel like I can push myself without being totally spent. I feel like not working out will be an absolute disaster for me and I'm definitely regretting not having kept up my workouts over the last several (4+) months. Can only move forward, though.

I have noticed significantly less dizzy spells now that I am back into working out and hydrating much more - for me, reta also decreases my cue to drink water (also, ADHD) so I have been very intentional about hydration.

The most immensely not fun thing in the past week or so: gout! Henry the 8th style, I suddenly got a bout of gout in my right foot - pretty damn unpleasant. Unsure if it is chronic or acute, but considering the list of things chronically up with me, I am not super confident that this will be a one and done event. Got put on prednisone which is helping a lot. The list of things newly going wrong with my body is definitely making my eyebrow raise on if I have an autoimmune condition that has recently decided to make an appearance. Rheumatologist is gonna have their work cut out for them.

Recently did a comprehensive metabolic panel and everything is looking good. I also use a monthly blood testing service called Rhythm to keep an eye on hormones and such and my T is pretty low - not shocking considering the enormous stress and not working out. Adding ashwagandha, DHEA, tongkat ali, and tribulus to my stack - the DHEA is the only thing that 1000% will increase T levels, but the other stuff has at least a bit of promising research behind it.

Meeting with my new doc soon, I am sure I'll fascinate him. Exciting updates to come!

 

[Foggy-Hollow]

Thank you for taking the time to reply!

I suppose that yes, it is a type of curse to have geneticists interested… part of my mourning/adjusting was coming to terms with the unknown, but knowing that my dad (who has a 30yr head start on me) has been stable for decades is encouraging. He smoked for decades, and has a belly and a half, IOW not exactly health-minded.

The only thing I can do is monitor things. My big fear honestly is losing one of my children. Neither like contact sports, so we’ve got that going for us. so far everyone is stable.

That VERY interesting about new blood vessel proliferation. Oral estrogen has a similar effect with hemangiomas: encouraging further growth. Hadn’t considered it could be opportunistic if cancer is around. Also hadn’t considered the protein weakness as a problem for that picture. I had stopped oral form before it was discovered, knock on wood. 7cm on my liver, 5cm is operable. Not a problem for the moment thankfully.

 

[Foggy-Hollow]

Update on Peptides and Health - 10/22/25

So, I figured I should check in here whenever something interesting happens regarding my health, both because I love talking about myself and because it's good for documentation.

I have finally settled in to a new space after a very stressful move which had kicked off a lot of different health difficulties. Stress levels are significantly better now.

I have gotten back on the following peptides:

Retatrutide (2mg/week)

KLOW complex (3mg, daily)

CJC + Ipamorelin (200mcg morning + night, daily)

L-Carnitine (1000mg before workouts, daily)

MOTS-C (5mg, 3x/week)

I also take oxytocin, semax and selank but this thread is focusing more on the physical than the mental.

Getting back on KLOW immediately had notable effects on the cigarette-paper scarring that decorates my back, stomach, and shoulders/pecs. For a few days, the stretch marks were this inflamed-ish looking red, with no pain or anything, but then quickly turned back to my usual skin tone and began fading even more than they already had . Unfortunately gaining more scar tissue than I'm losing because I have gotten back into working out and therefore my muscle volume is getting back to where it was, and my skin is extremely unhappy about it and is making it known.

Recovery times from intense workouts have been really good - feel like I can push myself without being totally spent. I feel like not working out will be an absolute disaster for me and I'm definitely regretting not having kept up my workouts over the last several (4+) months. Can only move forward, though.

I have noticed significantly less dizzy spells now that I am back into working out and hydrating much more - for me, reta also decreases my cue to drink water (also, ADHD) so I have been very intentional about hydration

The most immensely not fun thing in the past week or so: gout! Henry the 8th style, I suddenly got a bout of gout in my right foot - pretty damn unpleasant. Unsure if it is chronic or acute, but considering the list of things chronically up with me, I am not super confident that this will be a one and done event. Got put on prednisone which is helping a lot. The list of things newly going wrong with my body is definitely making my eyebrow raise on if I have an autoimmune condition that has recently decided to make an appearance. Rheumatologist is gonna have their work cut out for them.

Recently did a comprehensive metabolic panel and everything is looking good. I also use a monthly blood testing service called Rhythm to keep an eye on hormones and such and my T is pretty low - not shocking considering the enormous stress and not working out. Adding ashwagandha, DHEA, tongkat ali, and tribulus to my stack - the DHEA is the only thing that 1000% will increase T levels, but the other stuff has at least a bit of promising research behind it.

Meeting with my new doc soon, I am sure I'll fascinate him. Exciting updates to come!

That’s interesting about your autoimmune flare, glps have a reputation for knocking inflammation down. Not sure about your other peps.

Anecdotally, fish oil is helpful. I fight osteoarthritis here and there, especially when starting a new activity. DHA is the better content, if you want sources/ numbers I can dig them up. I’m guessing you have the scoop on joint supplements.

 

[Think]

Update on Peptides and Health - 10/22/25

So, I figured I should check in here whenever something interesting happens regarding my health, both because I love talking about myself and because it's good for documentation.

I have finally settled in to a new space after a very stressful move which had kicked off a lot of different health difficulties. Stress levels are significantly better now.

I have gotten back on the following peptides:

Retatrutide (2mg/week)

KLOW complex (3mg, daily)

CJC + Ipamorelin (200mcg morning + night, daily)

L-Carnitine (1000mg before workouts, daily)

MOTS-C (5mg, 3x/week)

I also take oxytocin, semax and selank but this thread is focusing more on the physical than the mental.

Getting back on KLOW immediately had notable effects on the cigarette-paper scarring that decorates my back, stomach, and shoulders/pecs. For a few days, the stretch marks were this inflamed-ish looking red, with no pain or anything, but then quickly turned back to my usual skin tone and began fading even more than they already had . Unfortunately gaining more scar tissue than I'm losing because I have gotten back into working out and therefore my muscle volume is getting back to where it was, and my skin is extremely unhappy about it and is making it known.

Recovery times from intense workouts have been really good - feel like I can push myself without being totally spent. I feel like not working out will be an absolute disaster for me and I'm definitely regretting not having kept up my workouts over the last several (4+) months. Can only move forward, though.

I have noticed significantly less dizzy spells now that I am back into working out and hydrating much more - for me, reta also decreases my cue to drink water (also, ADHD) so I have been very intentional about hydration.

The most immensely not fun thing in the past week or so: gout! Henry the 8th style, I suddenly got a bout of gout in my right foot - pretty damn unpleasant. Unsure if it is chronic or acute, but considering the list of things chronically up with me, I am not super confident that this will be a one and done event. Got put on prednisone which is helping a lot. The list of things newly going wrong with my body is definitely making my eyebrow raise on if I have an autoimmune condition that has recently decided to make an appearance. Rheumatologist is gonna have their work cut out for them.

Recently did a comprehensive metabolic panel and everything is looking good. I also use a monthly blood testing service called Rhythm to keep an eye on hormones and such and my T is pretty low - not shocking considering the enormous stress and not working out. Adding ashwagandha, DHEA, tongkat ali, and tribulus to my stack - the DHEA is the only thing that 1000% will increase T levels, but the other stuff has at least a bit of promising research behind it.

Meeting with my new doc soon, I am sure I'll fascinate him. Exciting updates to come!

I have EDS too and have had great results from GHK-CU. I want to try KLOW next if I can figure out a tolerable route of administration. Has it helped with mast cell issues for you?

 

[bibson]

Update on Peptides and Health - 11/05/25

I have gotten a new PCP and things are going well - he is a DO, and a thorough guy who is taking my concerns seriously. We are tackling my main concerns of heart rate/dizziness issues + EDS/weird nerve stuff. His primary focus right now is figuring out the cardiovascular issues as while my loosey goosey joints, peripheral neuropathies and random body parts going numb (fun paresthesia!) are all not great, cardiovascular issues are the main ticket to the graveyard if something serious is not addressed. He's the first doctor I've had to ask me questions like "why do you think it might be x or y?" and really explains his order of operations. The highest quality care I have ever gotten from a PCP - it's awesome! My insurance provider dropping my previous doc may have been an absolute pain but has led to this at least.

I was pretty upfront with the doc regarding my peptide use and he wasn't against them necessarily but did request I halt taking them + my supplement stack for a month to see if it has impacts on any of the issues I am facing - either bettering or worsening. I am following that as I can totally see where someone might not be able to confidently say what route to take without eliminating the most obvious factor of "it might be the several different research peptides you are injecting into your body." Assuming all remains equally as bad as usual, whenever I reintroduce my peps and supps I will go ahead and slowly add on things probably week by week to figure out if there's anything having more notable impacts than others. Going to do my best not to full-on redevelop my BED with the absence of retatrutide (going well so far). What I expect to change:

No retatrutide > increased food noise/binge tendencies, decreased heart rate.

No KLOW > more joint pain/inflammation.

No CJC + IPA > worse sleep, slower recovery from workouts, less muscle volume.

No L-Carnitine > slightly worse recovery, less anxiety due to not having to frequently stick a giant needle in my asscheek.

No MOTS-C > decreased energy, decreased heart rate.

I am not going to say all of these things absolutely WILL happen as that is setting myself up for placebo - it's also highly possible that these could be contributing to ongoing issues. Tradeoffs, ya know. I am very interested to see how much my heart rate fluctuates with the absence of peptides - it's highly possible that I simply have too many things in me that incrementally boost my heart rate (MOTS-C, reta, vyvanse, coffee) and that taking some of them off my plate will let my cardiovascular system recover. I do think my dysautonomia will likely not resolve just from this, but it may make those high highs of ridiculous resting HR feel less like an ER trip waiting to happen. It's also a bit of a tradeoff - being fat obviously has quite a bit to do with a higher heart rate too, so taking away something that has helped me go from 248 pounds to 220 may have some bad impact (and the other supps that contribute to energy > better/more workouts > increased CV capacity). It's too early to know and there are a lot of factors at play, but this break will help assess what my baseline is and make informed choices on my health. My previous peptide break during one of the most stressful times of my life wasn't exactly a neutral spot to gather data on my state of being.

An update on the gout! It's probably not gout (yay)! It probably is a form of arthritis (boo!). My uric acid levels stayed consistently low before and after the flareup, which doesn't line up with gout. However, I am still having edemas in my right foot, which is not good. I'm gonna get some compression socks. While X-rays didn't show any damage to the foot, there's a pretty decent chance it is a form of arthritis - either osteoarthritis or rheumatoid. Osteoarthritis would make sense due to the unstable joints (and my feet are unfortunately pretty deformed - Haglund deformity, hallux varus, cavus). Rheumatoid arthritis would make sense due to family history, nothing showing up on the X-ray, and a lot of soft tissue inflammation.

I will be doing PT in December and going to a rheumatologist soon to get to the bottom of things! Will continue updates as I get answers - especially what happens with this break in peptide/supplement usage + what happens as I get back on them.

TL;DR:

Pausing peps and supplements for 1 month to assess if they have an impact on existing issues. Will document changes.

Will slowly re-introduce peps and supplements after break to see what is having good impact. Will document changes.

No gout but probably some form arthritis. Updates as I know more!

Got a rheumatologist who I will see soon. Updates once I see them!

Will be doing PT in December. Shall share takeaways!

I have EDS too and have had great results from GHK-CU. I want to try KLOW next if I can figure out a tolerable route of administration. Has it helped with mast cell issues for you?

Not noticeably, sadly! KLOW is actually one that caused some histamine response (at least localized) when I first started taking it (as did MOTS-C), but the itchy-bump injection sites stopped after taking it two or three times.

 

[Crumplestiltskin]

Hey! Fellow EDS here, and I'm late to the party:

Have you tried glucosamine and maitake? That combo was so helpful for my ligament overstretching.

On a PT note, I have found doing safe isometric exercises have also been so supportive for daily life.

 

[conzopiriani]

Update on Peptides and Health - 11/05/25

I have gotten a new PCP and things are going well - he is a DO, and a thorough guy who is taking my concerns seriously. We are tackling my main concerns of heart rate/dizziness issues + EDS/weird nerve stuff. His primary focus right now is figuring out the cardiovascular issues as while my loosey goosey joints, peripheral neuropathies and random body parts going numb (fun paresthesia!) are all not great, cardiovascular issues are the main ticket to the graveyard if something serious is not addressed. He's the first doctor I've had to ask me questions like "why do you think it might be x or y?" and really explains his order of operations. The highest quality care I have ever gotten from a PCP - it's awesome! My insurance provider dropping my previous doc may have been an absolute pain but has led to this at least.

I was pretty upfront with the doc regarding my peptide use and he wasn't against them necessarily but did request I halt taking them + my supplement stack for a month to see if it has impacts on any of the issues I am facing - either bettering or worsening. I am following that as I can totally see where someone might not be able to confidently say what route to take without eliminating the most obvious factor of "it might be the several different research peptides you are injecting into your body." Assuming all remains equally as bad as usual, whenever I reintroduce my peps and supps I will go ahead and slowly add on things probably week by week to figure out if there's anything having more notable impacts than others. Going to do my best not to full-on redevelop my BED with the absence of retatrutide (going well so far). What I expect to change:

No retatrutide > increased food noise/binge tendencies, decreased heart rate.

No KLOW > more joint pain/inflammation.

No CJC + IPA > worse sleep, slower recovery from workouts, less muscle volume.

No L-Carnitine > slightly worse recovery, less anxiety due to not having to frequently stick a giant needle in my asscheek.

No MOTS-C > decreased energy, decreased heart rate.

I am not going to say all of these things absolutely WILL happen as that is setting myself up for placebo - it's also highly possible that these could be contributing to ongoing issues. Tradeoffs, ya know. I am very interested to see how much my heart rate fluctuates with the absence of peptides - it's highly possible that I simply have too many things in me that incrementally boost my heart rate (MOTS-C, reta, vyvanse, coffee) and that taking some of them off my plate will let my cardiovascular system recover. I do think my dysautonomia will likely not resolve just from this, but it may make those high highs of ridiculous resting HR feel less like an ER trip waiting to happen. It's also a bit of a tradeoff - being fat obviously has quite a bit to do with a higher heart rate too, so taking away something that has helped me go from 248 pounds to 220 may have some bad impact (and the other supps that contribute to energy > better/more workouts > increased CV capacity). It's too early to know and there are a lot of factors at play, but this break will help assess what my baseline is and make informed choices on my health. My previous peptide break during one of the most stressful times of my life wasn't exactly a neutral spot to gather data on my state of being.

An update on the gout! It's probably not gout (yay)! It probably is a form of arthritis (boo!). My uric acid levels stayed consistently low before and after the flareup, which doesn't line up with gout. However, I am still having edemas in my right foot, which is not good. I'm gonna get some compression socks. While X-rays didn't show any damage to the foot, there's a pretty decent chance it is a form of arthritis - either osteoarthritis or rheumatoid. Osteoarthritis would make sense due to the unstable joints (and my feet are unfortunately pretty deformed - Haglund deformity, hallux varus, cavus). Rheumatoid arthritis would make sense due to family history, nothing showing up on the X-ray, and a lot of soft tissue inflammation.

I will be doing PT in December and going to a rheumatologist soon to get to the bottom of things! Will continue updates as I get answers - especially what happens with this break in peptide/supplement usage + what happens as I get back on them.

TL;DR:

Pausing peps and supplements for 1 month to assess if they have an impact on existing issues. Will document changes.

Will slowly re-introduce peps and supplements after break to see what is having good impact. Will document changes.

No gout but probably some form arthritis. Updates as I know more!

Got a rheumatologist who I will see soon. Updates once I see them!

Will be doing PT in December. Shall share takeaways!

Not noticeably, sadly! KLOW is actually one that caused some histamine response (at least localized) when I first started taking it (as did MOTS-C), but the itchy-bump injection sites stopped after taking it two or three times.

Thank for your very thorough reply about your continuing therapies; very much appreciated.

 

[Foggy-Hollow]

Re: root cause.

I haven’t read up on “related” conditions but for Marfan Syndrome it’s a protein scaffolding problem. Bodies lay down scaffolding before building up protein. Protein is in many many tissues of the body. For Marfan that initial framework is weak. We’re hyper-mobile because the weak scaffolding is stretchy and not as restricted, same with aortic aneurism: the blood vessel walls are weaker and blood pressure is highest coming out of the pump (heart) so that sees the most deformation over time.

I work in a mechanical world so have just a basic grasp on my biology.

I can’t fix my scaffolding problem: I can’t reprogram my genes to build it better or stronger.

From what I see, the things within my control:

Stronger muscles to “hold myself together” - weight lifting within guidance of my doc, eating good protein to support muscle health.

Stretching with the goal of balancing things out: my desk job creates tightness quickly. Example: my quads are ever tight but my hamstrings are plenty flexible. There’s irony somewhere in there.

My blood pressure was creeping high alongside weight, so I see tirzepatide as much for getting the weight factor down with the benefit of anti-inflammatory properties. In the meantime I am taking BP med to keep the damage low.

-

I need to research overlap between autoimmune disorders and Marfan, Hashinoto’s has entered my picture. Also recently found that ADHD folks have a ~620% increase in gluten intolerance/sensitivity. (Study in Italy iirc.)

-

I started PT due to kneecap pain. She has all people work on controlling the hyperextended range of knee motion so that if/when it happens, the body doesn’t panic and go off balance and fall. (Again, layman’s explanation.) Keep both feel flat through the exercise, take a resistance band behind the knee and pull it: from the slightly bent to full natural range.

She also has every patient stand on one leg at a time, collecting 2 minutes total per leg. The position for this should be alignment: not a hyperextended knee position on the supporting leg. Align ankle-knee-hip-shoulder-ear. Think tall marionette thoughts. If you want bonus challenge carefully hold your hand above a support and close your eyes.

-

That’s all I’ve got for the moment. Winter sucks for mental health so I’ve been trying to get that front shored up. This is later in the year than usual for problems to rear their head so I’m hopeful the thyroid work in 2025 has been a positive change.

Really REALLY want to get the weight off.

Good luck, all.