Supplements Part 2: Collagen supplements and EDS/HSD

Jun 14, 2024 | MeekaC | @meekaclayton | Comments (17)

Food supplements | EFSA

Now that we reviewed features of EDS/HSD related to  supplements, it makes sense to ask the question: “will taking supplemental collagen help me?”  To answer this question let’s dig a bit further into what is collagen – the 2nd most common substance in the human body (after water).

Collagen is assembled in a triple helix design from the amino acids proline, glycine, lysine, and hydroxyproline. Amino acids are the building blocks of protein. Vitamin C, zinc, copper and manganese act as cofactors for the formation of collagen.  Collagen makes up at least 30% of our whole-body protein content and there are currently 28 known different types of collagen that have been identified, with further diversity within each subtype.  Collagen from supplements typically comes from animal-derived sources. These include:

  • Type I: bovine and fish bones, ligaments, tendons, hides, and skin, eggshells
  • Type II: chicken cartilage and joint
  • Type III: bovine skin, blood vessels, and internal organs
  • Type V and X: eggshells

Different manufacturing processes can affect the structure, composition, and property of collagen produced. The different manufacturing processes can result in the following types of collagen:

  • Insoluble undenatured native collagen (maintain triple helix design): Type I and Type II
  • Soluble native collagen (maintain triple helix design): Type I and type II
  • Gelatin (denatured collagen – no triple helix): Type I and Type II
  • Hydrolyzed collagen (peptides and amino acids – no triple helix): Type I and Type II
  • Vegan collagen or Vegan collagen builder: plant extracts, amino acids, vitamins, minerals.

Different collagens consumed within the diet are broken down to peptides and then amino acids for absorption. Once absorbed, our bodies genes will decipher what proteins the individual amino acids will be reformed into and where in the body they will go.  If a genetic mutation is present that alters the formation and structure of collagen, the body will continue to produce faulty collagen despite the amount of amino acids or collagen supplemented by diet. And although it seems like they may help, there is not yet enough clinical studies to support supplementation of vitamin C, zinc, copper, or manganese to enhance the collagen matrix in EDS and HSD patients.

Collagen supplementation is however being studied in individuals who experience pain or have been diagnosed with osteoarthritis and rheumatoid arthritis.  Native collagen Type II has been shown  shown to decrease joint discomfort and increase joint mobility when 40 mg/day was consumed potentially by decreasing inflammation in non-osteoporosis individuals. Hydrolyzed collagen may also have chondroprotective effects, which means protecting your cartilage. Additional research is still needed on understanding the underlying pathophysiology of pain and research is needed in the EDS and HSD population to determine if collagen supplementation provides therapeutic symptom relief. Let us know in the comment section below if you have tried collagen supplementation, and if it has helped you.

 

Author: Lisa Mejia RD/N, LD/N, CDCES, IFNCP

Interested in more newsfeed posts like this? Go to the Ehlers-Danlos Syndrome blog.

Profile picture for tkdesign @tkdesign

Hello, I have diagnosed early age osteoporosis and have suffered connective tissue issues such as tarlov cysts in entire spine, and now joint hyper mobility and instability before age 50...never officially diagnosed with hEDS, but possible HSD by my TC surgeon who often works with hEDS patients. Despite 2 years of daily hydrolyzed collagen supplementation (all types) and HRT, I had zero improvement in DEXA or joint issues and now have suffered continued breakdown of muscle and fascia at age 50-53..wasting accelerated at 52 suddenly and severely. Now I have excruciating SI joint dysfunction and can hardly walk. I am desperate to find some dietary or supplement way to repair the connective tissues in my body.

Jump to this post

Hello,
I wanted to emphasize with you on the SI joint pain. I get bouts of that and have found the only thing that helps me is daily stretching. My pirifomus muscles were extremely tight, my SI joints were excruciating and in addition I had pain and tightness in my iliospoas muscles. These all seem to be connected issues and everything was just tightening up. I saw a very good physical therapist who helped me learn stretches to safely loosen this area up. I went from being almost incapable of walking to only having pain on some days. I have never stopped doing the stretches and the pain has stayed manageable. Once I addressed these issues I was able to increase my muscle mass by slowly increasing activity. This may not be possible for you and I’m not implying I know your particular situation but I was so skeptical about physical therapy. I could hardly walk so….how was increasing movement going to help pain? It hurt. But I had been suffering for two years and would have tried anything. Within a few weeks the pain began to decrease and I felt relief like nothing I’ve ever experienced. My thoughts were not consumed with constant, unrelenting and endless pain for the first time in years. If you have not already done so, I recommend asking about physical therapy. If you have already done so, ask again. Not all physical therapist are great at everything. I am still in pain but I was able to increase my body mass (I was 102lbs, I am now 115lbs) by drinking protein shakes and increasing my activity levels over the span of 5 years. I took this slowly, it was hard, it was painful, but I kept at it. Please do not think I am assuming everyone can do this. Some people have things much worse than me. I’m simply sharing how I improved my pain because perhaps there is something that might help for you. I know I appreciated every piece of advice I received as long as it wasn’t judgmental or the person wasn’t pretending they knew exactly what I was experiencing. I know very little about your situation. I simply want to offer what helped me in case that provides you with something that might help you. I hope things improve for you. Mine was so painful and it consumed every waking( and often sleeping) moment. Please keep hope and faith that there will be some relief from your pain. It wears so heavily on the spirit. Best of luck to you.

REPLY
Profile picture for mizebra @mizebra

I've been taking 20g of collagen and additional amino acids daily for over a year after an Amino Acid test showed that I was deficient. Initially I suspected it was a dietary issue, since I didn't eat a lot of protein...it doesn't make me feel well due to my GI issues. So after supplementing, retesting, plus some trial and error, I finally improved the AA levels by increasing my choline and methylfolate supplements to address my underlying genetic variants. (See research articles on Folate-dependent EDS.) I also needed to address a genetic variant impacting my methionine levels and found that SAMe was helpful with that. So bottom line, collagen on its own did not help me until I fixed the underlying deficiencies. I'm continuing to take collagen but stopped the separate AA supplements as my levels improved. I'm continuing to work on correcting my GI issues and histamine levels to see if that will help speed along the repair of damaged tissues. Considering prolotherapy if the nutritional fixes don't give me the pain relief and improved mobility I'm hoping for.

Jump to this post

Prolotherapy is an excellent fix for overworked ligaments that have become lax. My hypermobile SI joint corrected for a hip operation that left one leg shorter. It took 4 years to find doctors who understood and fixed the pain and gate issues created with prolotherapy. One leg actually always subluxed with a particular leg movement ... ouch! SI Joint movement and ligament damage, as well as prolotherapy's ability to fix ligaments, is not common knowledge around orthopedics.

REPLY

I believe collagen has helped me tremendously. As a Tom Boy and longtime tennis athlete and always very flexible, I did not have real EDS issues until my 70's. My unanswered questions and some research led me to take collagen. I am now an old lady with the first fingernails of her lifetime, so I know collagen has done something in my body. I also did not replace my supply right away and have gone downhill rapidly, developing varicose veins that I had during pregnancies years ago, but had been long gone.

REPLY
Profile picture for aralexisry @aralexisry

Hello,
I wanted to emphasize with you on the SI joint pain. I get bouts of that and have found the only thing that helps me is daily stretching. My pirifomus muscles were extremely tight, my SI joints were excruciating and in addition I had pain and tightness in my iliospoas muscles. These all seem to be connected issues and everything was just tightening up. I saw a very good physical therapist who helped me learn stretches to safely loosen this area up. I went from being almost incapable of walking to only having pain on some days. I have never stopped doing the stretches and the pain has stayed manageable. Once I addressed these issues I was able to increase my muscle mass by slowly increasing activity. This may not be possible for you and I’m not implying I know your particular situation but I was so skeptical about physical therapy. I could hardly walk so….how was increasing movement going to help pain? It hurt. But I had been suffering for two years and would have tried anything. Within a few weeks the pain began to decrease and I felt relief like nothing I’ve ever experienced. My thoughts were not consumed with constant, unrelenting and endless pain for the first time in years. If you have not already done so, I recommend asking about physical therapy. If you have already done so, ask again. Not all physical therapist are great at everything. I am still in pain but I was able to increase my body mass (I was 102lbs, I am now 115lbs) by drinking protein shakes and increasing my activity levels over the span of 5 years. I took this slowly, it was hard, it was painful, but I kept at it. Please do not think I am assuming everyone can do this. Some people have things much worse than me. I’m simply sharing how I improved my pain because perhaps there is something that might help for you. I know I appreciated every piece of advice I received as long as it wasn’t judgmental or the person wasn’t pretending they knew exactly what I was experiencing. I know very little about your situation. I simply want to offer what helped me in case that provides you with something that might help you. I hope things improve for you. Mine was so painful and it consumed every waking( and often sleeping) moment. Please keep hope and faith that there will be some relief from your pain. It wears so heavily on the spirit. Best of luck to you.

Jump to this post

Great information! Thank you for sharing!

REPLY
Profile picture for anjah @anjah

This pretty much answered my question as to whether supplementation affected the formation of collagen in the body. I also have painful osteoarthritis and fibromyalgia and wondered about pain relief from such supplements. I make bone broth as a base for my soups, but don't eat enough of them to say I've noticed any effect on my pain. Thank you for this information Lisa.

Jump to this post

@anjah
Hi, My name is Julie, I have been suffering terribly for 19 years from Sjögren's .
I was ignored by my doctors
every time I told them about my severe muscle and joint pain. I also felt a terrible
exhaustion that I couldn't
fight. 19 years later I just found out that I have EDS,
with dozens of symptoms.
My doctors just brushed me off, probably because they didn't know what it was. They acted like I was just some hysterical female. One day, my husband brought me some multi source Collagen Powder saying that maybe it would help my pain. At this time, I had had
an auto immune attack in my ears, which took 40% of my hearing in the end. The only thing my team of physicians did was give me huge amounts of antibiotics and steroids. I ended up being unable to leave my room, for a year because of the exhaustion and terrible pain everywhere, joints and muscles. Those drugs are terrible for autoimmune disorders and I literally began to think that I wasn't going to make it. So when my husband brought me the Collagen Powder, I took it right away, twice a day. Within a week, I was up and
getting around my house. It
started helping with the pain, so quickly that I couldn't believe it. After a few weeks, I was able to leave my house and play with my young daughter.
I kept feeling less pain, until it was mostly gone or on bad days, not that bad. I actually stopped taking it bit by bit, and I felt okay. When it does start coming back, I just start taking it again and it gets better. I have told two friends who have rheumatoid arthritis about it, and they won't live without it anymore. We all had very good pain reduction using this Collagen powder. I'm perplexed as to why the there aren't any positive
comments on this site. I hope you find something that helps you feel better too. 🙂

REPLY

Love hearing solutions and reclaiming life!!
Please share the brand and specifically the name of callogen .
I’ve tried many so the specifics would be great!
Stay well!!!

REPLY
Profile picture for julierickett @julierickett

@anjah
Hi, My name is Julie, I have been suffering terribly for 19 years from Sjögren's .
I was ignored by my doctors
every time I told them about my severe muscle and joint pain. I also felt a terrible
exhaustion that I couldn't
fight. 19 years later I just found out that I have EDS,
with dozens of symptoms.
My doctors just brushed me off, probably because they didn't know what it was. They acted like I was just some hysterical female. One day, my husband brought me some multi source Collagen Powder saying that maybe it would help my pain. At this time, I had had
an auto immune attack in my ears, which took 40% of my hearing in the end. The only thing my team of physicians did was give me huge amounts of antibiotics and steroids. I ended up being unable to leave my room, for a year because of the exhaustion and terrible pain everywhere, joints and muscles. Those drugs are terrible for autoimmune disorders and I literally began to think that I wasn't going to make it. So when my husband brought me the Collagen Powder, I took it right away, twice a day. Within a week, I was up and
getting around my house. It
started helping with the pain, so quickly that I couldn't believe it. After a few weeks, I was able to leave my house and play with my young daughter.
I kept feeling less pain, until it was mostly gone or on bad days, not that bad. I actually stopped taking it bit by bit, and I felt okay. When it does start coming back, I just start taking it again and it gets better. I have told two friends who have rheumatoid arthritis about it, and they won't live without it anymore. We all had very good pain reduction using this Collagen powder. I'm perplexed as to why the there aren't any positive
comments on this site. I hope you find something that helps you feel better too. 🙂

Jump to this post

Hello @julierickett and welcome to Mayo Clinic Connect. I appreciate you sharing your experience with Sjögren's. I'm sure you feel relieved to have found something to relieve your pain, especially after 19 years.

You mentioned that an autoimmune disorder attacked your ears. Could you provide more details about what type of ear problem you had? Did it affect your balance or just your hearing?

REPLY
Please sign in or register to post a reply.