Alternatives to Surgical Treatment
Types of Regenerative Treatments
Various links to research articles are not exhaustive, but are given as reference and to give a starting point. Listings on this site are not intended to be recommendations and are for educational purposes only. Consult with your doctor for your particular case!
Prolotherapy
Prolotherapy (also known as proliferative injection therapy) is an injection therapy whereby various solutions are injected into the tissues of a joint to stimulate a healing cascade.
There are various naming systems for types of prolotherapy. One classification separates it into 3 types: Inflammatory, Growth Factor stimulating, and Growth Factor injection (
), but this is not consistent throughout the literature at this time. A good way to think of it, is that it “tricks” the body into thinking there has been a new injury so that it stimulates the body to heal itself.
While there are various studies arguing for and against the efficacy of prolotherapy, this, along with specific PT, gave me results. There are also many support groups where patients attest that it significantly helped them, although this is anecdotal, as are all reports until someone does a controlled study. Funding can be difficult for studies outside of the conventional medical system.
Prolotherapy as an intervention for chronic, refractory musculoskeletal pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8477775/
Nair A. Prolotherapy as an intervention for chronic, refractory musculoskeletal pain. Saudi J Anaesth. 2021 Oct-Dec;15(4):463-465. doi: 10.4103/sja.sja_374_21. Epub 2021 Sep 2. PMID: 34658744; PMCID: PMC8477775.
https://www.caringmedical.com/prolotherapy-news/prolotherapy-ehlers-danlos-syndrome/
Platelet Rich Plasma (PRP)
PRP therapy is based on the fact that platelet growth factors (PGFs) support the three phases of wound healing and repair cascade (inflammation, proliferation, remodeling)().
This involves drawing the blood from the patient, spinning it down, and injecting their own platelet rich plasma into their tissues and joints. This is a step “above” prolotherapy since you are directly injecting growth factors into the tissues/joints instead of causing the body to stimulate its own growth factors that will then be drawn to the injected area. Currently there is not one way that PRP is prepared, and this may affect the outcome of the treatments.
Platelet rich plasma injection grafts for musculoskeletal injuries: a review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2682411/
Sampson S, Gerhardt M, Mandelbaum B. Platelet rich plasma injection grafts for musculoskeletal injuries: a review. Curr Rev Musculoskelet Med. 2008 Dec;1(3-4):165-74. doi: 10.1007/s12178-008-9032-5. PMID: 19468902; PMCID: PMC2682411.
Stem Cells
Stem cells are cells that have the ability to both differentiate into different cell types, as well as self renew.(🔗)
There is controversy, mainly regarding the ethics of embryonic stem cells, but mesenchymal stem cells have shown promising results. I have seen the most information on stem cells from Wharton’s Jelly from discarded umbilical cords that generally end up as medical waste. While the USA currently doesn’t allow the use of these stem cells, they are being used in other countries regularly, and osteoarthritis is one use (and due to the “loose joints” of EDS patients, we have accelerated, widespread osteoarthritis).
Stem cells also have been shown to regulate inflammation (🔗). In the US, stem cells are often taken from a person’s own fat or bone marrow, but these are “older” stem cells. Currently, US citizens are traveling to such places as Costa Rica, Panama, and Mexico to get treatment with Wharton’s Jelly Mesenchymal Stem Cells (I have known some!)
I have found that this book gives good background and information on stem cells, and is not too clinical:
Stem Cell Therapy: A Rising Tide By Neil H. Riordan, PA, PhD
https://www.neilriordan.com/stem-cell-therapy-a-rising-tide/
The Pros and Cons of Mesenchymal Stem Cell-Based Therapies
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6719501/
Musiał-Wysocka A, Kot M, Majka M. The Pros and Cons of Mesenchymal Stem Cell-Based Therapies. Cell Transplant. 2019 Jul;28(7):801-812. doi: 10.1177/0963689719837897. Epub 2019 Apr 24. PMID: 31018669; PMCID: PMC6719501.
Additional Non-surgical Therapies
Various links to research articles are not exhaustive, but are given as reference and to give a starting point. Listings on this site are not intended to be recommendations and are for educational purposes only. Consult with your doctor for your particular case! This is an initial list, and more will be added.
Nutritional Support & Supplements
First, I want to say to be wary of hormones.
Progesterone has been noted to loosen collagen, and I was given this by a doctor who said it would help me heal, and I developed issues in joints that were never before affected. Then I spoke to my geneticist and she confirmed that it does loosen collagen. She also said that estrogen is collagen protective, but the dose for an effect is so high that it would cause toxicity.
DHEA was given to me to “optimize” my hormones. I thought it would be okay because it is a testosterone and estrogen precursor, and not progesterone (from what I have been able to determine). However, within a couple weeks of taking it I was in a neck brace. After going off the DHEA I was out of the neck brace in just over a month. I didn’t know if it was related, but I searched many of the EDS patient forums, and I found others that also had joint loosening from taking DHEA. So, yes, it is anecdotal… but so is so much of our disorder since it is belatedly diagnosed, or often not recognized at all.
I do take many other supplements, and I will add here as I fill out this website!
There is no one right answer as we are all different! Others likely have different stories, and that is natural.
Physical Therapy
Because EDS patients have too much laxity (stretchiness) of ligaments, the primary stabilizers of the skeletal system, toning and strengthening the muscles, the secondary stabilizers, is essential.
The problem lies in the fact that many physical therapists are not familiar with EDS patients and I, personally, have had injuries resulting from therapists that insisted I needed to “stress the joint” not realizing that my bones were grinding together! So be wary and do your homework… support networks for EDS patients (found here) are invaluable in learning what therapists (and doctors) to see and to avoid.
Programs to consider (do your due diligence) that have been suggested by PT patients:
Muldowny Physical Therapy https://www.muldowneypt.com/living-life-to-the-fullest-with-ehlers-danlos-syndrome/
This was instrumental (along with prolotherapy and PRP) for taking me from “recliner-ridden” to having mobility to move around, drive, and have a life again. I personally ordered the hard copy so I can mark in it and take notes, but if you follow the link above, he gives access to getting the ebook, free chapters, and his Facebook Page if you have questions about his protocol. I still do this protocol to this day, and I can tell a different if I have to take time off due to travel or other issues.
The Egoscue Method https://egoscue.com/
This is individualize physical therapy that addresses posture imbalances. I have also worked with Egoscue to help be more “symmetrical.” You work one-on-one with a therapist who re-evaluates you weekly and updates your exercises as your body changes.
