Ehlers-Danlos Syndrome and Peptides

[bibson]

Update on Peptides and Health - 12/13/2025

Hello everyone! I am back, but certainly not better than ever. It's been about a month since my last check-in. Last update, I confirmed that I was getting off my peptides for the next month to rule out if they were contributing to my symptomology. In summary - no. Things got worse with my health and heart rate issues did not stop - ended up in the ER with SVT, shortness of breath etc. - I typically deal with tachycardia and shortness of breath daily but it was at the point of intolerability and I needed to rule out a pulmonary embolism as I still (!) have swelling in my right foot.

I made a few predictions on what would happen with the peptides after cessation; I want to reflect on them:

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.

No retatrutide > full on resurgence of my BED - I am hungry all. the. time. Same as it was for the rest of my life. HR did NOT go down.

No KLOW > have had increased inflammation and joint pain.

NO CJC + IPA > correct - unable to assess workout recovery because I've barely been able to work out.

No L-Carnitine > unable to assess workout recovery because I've barely been able to work out.

No MOTS-C > Decreased energy, no decreased HR.

With this, plus testing of my own (recording standing/resting HR - BP does NOT drop but HR skyrockets, been tracking HR over time with a Visible band, trying compression socks and noting an across the board HR drop of over 30bpm; resting went from 85>60-65 and standing went from 100-120>85~) - I have concluded I almost 1000% have POTS which is causing a lot of my issues. I have a tilt table test scheduled to get a full diagnosis, but I meet the criteria. Compression socks luckily help a LOT.

I now have a diagnosis of hypermobility spectrum disorder - I am still trying to see if I am hEDS or not; I had the rheumatologist I was seeing go over the criteria with me and I do meet it even without the bits that can't be determined without an echocardiogram. Unfortunately her supervisor (she was in a fellowship) decided to come in and turn the entire appointment to why he thinks I am actually a hypochondriac, pried incredibly invasively into my personal reasons for "wanting to get diagnosed with it" and that getting a diagnosis would actually hurt me and not help me, entirely based on his own personal medical opinion. After he left, I had the fellow Dr. pause notetaking and basically said I have no care for a stranger's personal opinion, that I simply want to follow diagnostic differentials, and that trying to find out what is going on with me is entirely different from WANTING to get diagnosed with something. We agreed to follow up after remaining differentials were ruled out. The experience was great with the fellowship doc, not so much her supervisor - he was very much textbook dismissive.

With hypermobility, I am now in PT focusing on stabilizing joints and decreasing pain levels - the PT is very understanding and gets the mission of joint stabilization to a T.

I am getting an echocardiogram as my leads showed repeat abnormalities when I went to the ER - this has the bonus of helping out with my hEDS diagnosis if I have it, there are a few diagnostic characteristics within the heart.

I was tested for RA related inflammatory markers by rheumatology - I am not seropositive RA. Likely do not have RA.

Peptide and Health Next Steps

I really need to stop gaining weight/binge eating. I have gained around 10 pounds, fast. My goal over the next months are to improve my QOL by:

Getting back on retatrutide to manage BED.

Getting back on KLOW to help with tissue repair, especially as I am working on building stabilizing muscles.

Getting back on CJC + IPA to help with muscle repair.

Getting off of caffeine to help assess what needs I have energy wise - I am downing 400-800mg daily, throughout the day, and it's bad. Certainly not good for POTS.

Getting a POTS diagnosis.

Getting an echocardiogram to check heart health.

Possibly getting an hEDS diagnosis - IF differentials are ruled out.

Getting a sleep study + treatment for sleep apnea to decrease fatigue.

I may introduce other peps back in the future, but I would do so slowly as to tease out anything making me feel worse.

I have an appt with a different rheumatologist in February for a second opinion in case this one does not stay good on their word of following differential diagnoses.

This next few months will be focused on reconditioning/not further deconditioning, building stabilizing muscle strength, decreasing pressure on my joints by losing weight, and learning how to manage my POTS. I have no idea if I will get diagnosed with hEDS - frankly, I do not WANT a connective tissue disorder, but I do think it would be good to have on my chart if I did have it.

Will update more when pertinent!

 

[bibson]

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.

I have heard of glucosamine, but only maitake in the context of being a tasty mushroom - I will look into this more! I appreciate you sharing your experience.

My PT has been really good with recommending iso exercises, especially for my shoulders. I think they will fundamentally suck to do for a while but lead to a lot better pain management.

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.

It is not too different for EDS, with the failing protein being collagen rather than fibrillin-1 in Marfan. Manifestations of where that causes the most issues is different between the conditions (and even subtypes of EDS) but you are right on the money with the similarity.

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 am doing the same regarding weight training - although I am trying to not go for any progressive overload until I feel my stabilizing muscles are caught up to my bigger, more easily engaged ones.

Stretching is also a goal for me - muscle tightness can also be caused by your body constantly stabilizing your joints, they're never really able to "rest" normally. So the strengthening/conditioning like you mentioned is very important to the ultimate decrease in muscle tightness as well, which seems counterintuitive!

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.)

Yep I have gluten intolerance and ADHD - GI issues and neurodivergence go hand in hand. A lot of these conditions form a very interesting constellation.

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.

Good luck to you too! This is a dreary time of year and typically when I struggle too - I have definitely been having a harder time simply because I am so exhausted by the end of the day that I barely have the capacity to socialize. Hopefully the work we are putting into our bodies allows us to do all that we want.

 

[Crumplestiltskin]

Thanks so much for sharing the details of this process. It's really helpful to read and you've compiled some great research.

I'm interested in the connection between Hashi's and EDS, as that's come up for me as well. I was so surprised how much of my joint pain came from Hashi flare ups.

Trusting you will find some good answers in the coming year!

 

[bibson]

Thanks so much for sharing the details of this process. It's really helpful to read and you've compiled some great research.

I'm interested in the connection between Hashi's and EDS, as that's come up for me as well. I was so surprised how much of my joint pain came from Hashi flare ups.

Trusting you will find some good answers in the coming year!

I have a sibling with Hashimoto’s and she also exhibits dysautonomia symptoms. I do wonder if she has EDS going on as well. Please do share what you find - it may be helpful! She also has MCAS so that's another connection. Too many connections! I wish I could just have one thing wrong with me lol.

 

[bibson]

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?

I realized I missed this and did not respond- sorry about that! I am not sure if KLOW has had any effect in that way for me - my gut feeling (pun intended) says that BPC and KPV would have positive effects; BPC helps your gut tissue and it seems like your gut plays an important role in histamine regulation (study link for histamine/gut), while KPV is broadly anti-inflammatory which I would imagine help decrease histamine response.

I'm not sure if I have MCAS or not - I do have oral allergy syndrome and allergies to most things under the sun. MCAS, EDS and POTS are basically a cursed Venn diagram, and two of my siblings have it so... yeah it wouldn't be shocking if I have it. I used to very frequently get fevers, burst into little welts across my body that felt like a million hot needles stabbing into me... googling MCAS rashes, yeah that looks pretty familiar... hm... the thing is, I thought it was related to my very bad, horrific anxiety disorder I had (CPTSD complication ) bc they only happened during anxiety attacks - but in hindsight... maybe the anxiety attacks were because of the fevers and welts? I hadn't really thought about it. Hm. I have very little anxiety issues now - SSRIs for a time (off them now) and ongoing therapy has helped me a lot. Those episodes have mostly gone away. Yet, I did have one about 2 weeks ago, without the anxiety, along with a night where my hand randomly swelled a ton. Hm. Another thing to add to the list of "interrelated health issues that I should figure out but are unfortunately hard to figure out."

 

[TexGal]

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

My daughter in law has EDS and is using Reta with success. What is HGF? Should she have that tested while on Reta?

 

[YoYoFat]

My daughter in law has EDS and is using Reta with success. What is HGF? Should she have that tested while on Reta?

HGF is human growth factor. Many non-GLP1 peps promote angiogenesis (increase blood vessels and flow, which is good for things like recovery, bad for things like tumors). Reta doesn’t do that.

 

[bibson]

Update on Peptides and Health 12/20/25

A brief update now that I'm a week back on peps! I am currently taking reta, MOTS-C, KLOW, CJC/Ipamorelin, and Semax. Additionally, I've gotten on LDN- Low Dose Naltrexone; it's an opiod BLOCKER that encourages production of natural endo-opiods, which help with pain/inflammation. There are some decent studies out there showing it's a good novel treatment for chronic pain, so I thought I'd give it a shot. Only started yesterday.

Getting back on the reta has been excellent for not binge eating, but I do believe it exacerbated the POTS - there is a case study of someone with POTS having disproportionate HR increases on tirz, and I am much the same; it causes an HR increase across the board, but not enough that I'm in the danger zone - it does make me have pause about titrating up further as I'm at 2mg at the moment. 2mg works well for me right now so hopefully I can just float around that dose.

MOTS-C gives a solid energy boost for me, has been useful in dealing with fatigue/brain fog, as has the Semax. Semax + my vyvanse makes me feel like my fatigue is almost entirely gone and I can think much more clearly.

KLOW definitely is starting to take its effect - every time for the first week I'm on it, my scar tissue/stretch marks puff up and get all red, but then fade far more than they had before puffing up. Not sure exactly what mechanism is happening there.

CJC+IPA has been fine but need to run it for a while to see muscular benefits - I think having something a bit anabolic running while I am building out my stabilizing muscles in PT makes sense.

Compression socks, salt pills, and a gallon of water per day is keeping POTS symptoms manageable. I just have to pee all the time.

 

[Crumplestiltskin]

I'm curious to know if you've used AOD? I just read it can help prevent cartilage breakdown. It seemed to work best when combined with exosomes, as there was potential to regrow the cartilage.

I have what I suspect to be my second hip labral tear, and I'm wondering if AOD would be a helpful thing to add in.

 

[rosie1117]

I have diagnosed hEDS and POTS, and am getting testing done at the end of the week that we expect to confirm MCAS and some form of gluten sensitivity so this thread is very interesting to me. I am going to add MOTS-C to my routine soon and see how it works for me!

I have never taken reta, but I have been on tirz now for about 4.5 months and it has been a godsend for me for pain and inflammation. I noticed a difference in both the very next day, and a coworker told me my face was visibly less puffy 36 hours after my first pin. Even if I hadn't lost any weight to this point, the amount of relief it's given me would make every pin worth it. I see a specialist who focuses on EDS treatment, and she told me that her patients that also take tirz, whether it be prescription or otherwise, see the same benefits for pain and inflammation levels.

 

[Crumplestiltskin]

I have diagnosed hEDS and POTS, and am getting testing done at the end of the week that we expect to confirm MCAS and some form of gluten sensitivity so this thread is very interesting to me. I am going to add MOTS-C to my routine soon and see how it works for me!

I have never taken reta, but I have been on tirz now for about 4.5 months and it has been a godsend for me for pain and inflammation. I noticed a difference in both the very next day, and a coworker told me my face was visibly less puffy 36 hours after my first pin. Even if I hadn't lost any weight to this point, the amount of relief it's given me would make every pin worth it. I see a specialist who focuses on EDS treatment, and she told me that her patients that also take tirz, whether it be prescription or otherwise, see the same benefits for pain and inflammation levels.

I have struggled a lot with MCAS for years, after a severe mold exposure. Of the many things that can help, nasal probiotics ended up being very effective.

That's awesome that you saw the reduced inflammation with tirz!