hEDS and knee pain in the adult patient

Ross Hauser, MD

This article will focus on the adult patient with a diagnosis of hEDS (Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders). Many of these people have suffered from among many joint ailments, a predomination of knee pain, and a history of past knee surgeries.

Please see our companion article Ehlers-Danlos Syndrome and knee replacement complications for more information post knee replacement.

One of the great frustrations in this patient group of older patients is that much of the research and treatment guidelines center on adolescents or considerably younger patients. We will often get an email from an hEDS patient that begins with: “I am not an adolescent. . . ” Yet for many of these people, their problems did begin at this age, and, in the decades since they have been subjected to medical care that did not understand them or what type of treatment would be most beneficial in their particular situation.

The stories of some hEDS patients seeking a different treatment

All hEDS patients have their unique story, but many common characteristics. Here are some examples of emails we get:

The dislocating knee cap

I have always been very flexible. This helped me a lot when I participated in youth sports. As I started entering my teen years I started to have terrible knee pain. My parents took me from specialist to specialist, orthopedist to orthopedist, and after many exams, consultations, and long “wait and see,” periods, I finally had knee surgery for what was determined to be my primary problem patellar chondromalacia.

Over the years this did not help with my knee pain, my knees got worse. Not only did I start dislocating my patella, but the constant over-compensation of my knee problems lead to dislocations of my hips. I have tried many treatments, therapies, I actually dislocated myself in physical therapy. My search for treatments continues.

A dozen surgeries 

I am sixty years old. My knee problems have gone on for decades, I have had numerous ligament reconstruction surgeries and now add to that numerous failed total knee replacements, when you add in my latest procedures. My knees are in constant pain. Even with the knee replacements, they want to give out and feel unstable. My doctors want to spend more time on tests and less time on treatments. I can see it already, they are lining me up for a surgery that will make it an even dozen procedures in my lifetime. I need some options.

My meniscus

I cannot even count how many times I have dislocated my patella. I also had four surgeries to remove or repair parts of my meniscus in both knees. This all started when I was a teenager and now I am seventy. Yes, I have had medical treatments on my knees for almost sixty years. I am sometimes amazed that I have only had a handful of surgeries, especially when my doctors are always recommending more. I think not having so many surgeries has helped me stay active and I want to stay that way. I am looking for non-surgical options to save what is left of my meniscus. I know when the meniscus is gone, I have to get a knee replacement on both knees.

Recommendation to double knee replacement

My knees are now bent inward significantly. To say I have “knocked knees” would be an accurate assessment. This is causing me a lot of problems with knee pain, degenerative arthritis, knee instability, and patella malalignment. I can’t stand for any length of time without excruciating pain. When I try to straighten my knee to provide some comfort or “pop” my patella back into place, it hurts all the more. Double knee replacement has been recommended with the understanding that it may not help as much as I and my doctors want it to.

Surgery can help many people

For many people, some in similar situations to our examples above, surgery can be very beneficial and significantly increase the quality of life these people are missing. The people who did or will do well with surgery and not typically the people that we see. We see that people who are still looking for answers well after surgical procedures and other treatments have not offered significant results or even the smallest quality-of-life benefit.

The problems of walking creating muscle loss

A November 2020 study in the journal Arthritis Care and Research (1) examined the relationship between joint and ligament laxity and muscle strength during walking.

The researchers of this study concluded: “Alterations in muscle activation and spatiotemporal parameters during gait in patients with EDS may be a result of impaired proprioception and balance and muscle weakness. ”

Comment: What is being stressed is that during walking motion there is instability. Something is impacting and creating a delayed muscle activation response and the muscles are becoming weaker. We are going to explore this below with a discussion of the supportive ligaments of the pelvis, hips and knees, and a discussion of treatments.

What are we seeing in this image?

Forces across the pelvis with walking: With every step of walking one leg is supporting the weight of the body while the other leg is propelled forward. On the supporting limb side, the force of the weight of the body is transmitted through the sacrum and the sacroiliac joint and is counted by a ground force in a muscle reaction force that elevates the hip on this side while the other side is pulled down by the weight of the hanging limb. This leads to a shearing force in the pubic symphysis which tends to raise the pubic bone on the side of the supporting limb and lower the opposite pubic bone. In patients with pelvic stability, this can cause significant problems with gait.

Surgical options explored

This is a current surgical review of knee abnormalities and surgical guidelines presented by doctors at the University of Southern California (USC)  Epstein Family Center for Sports Medicine, Keck Medicine of USC. It appeared in the journal Clinics in Orthopedic Surgery. (2) Presented below is a summary highlight of this research.

Characteristics of patients with knee pain that may warrant a surgical recommendation:

Knee Surgeries:

Patellar stabilization procedures

Patellar tendon repair-reconstruction

Reconstruction of the cruciate ligament of the knee

No evidence exists regarding the graft choice and outcomes for cruciate ligament (anterior or posterior) reconstructions in patients with hEDS or other connective tissue disorders. No studies have explored the outcomes of the above procedures in larger groups of patients with EDS or other connective tissue disorders, and therefore, future investigation in this field is warranted.

In this research, surgeons try to help make clear the realistic expectations for patients who undergo surgery. Again for many people, surgery may be the only option and may help them with quality of life.

Knee instability after knee replacement

In our office, we see many patients with continued knee instability after knee replacement.

In this video, Ross Hauser, MD explains the problems of post-knee replacement joint instability and how a treatment to repair damaged and weakened ligaments can tighten the knee. This treatment does not address the problems of hardware malalignment. 

Summary of this video:

It is very common for us to see patients after knee replacement who have these clicking sounds coming from knee instability. This is not an instability from hardware failure. The hardware may be perfectly placed in the knee. It is instability from the outer knee where the surviving ligaments are. I believe that this is why up to one-third of patients continue to have pain after knee replacement. Dr. Hauser performs an ultrasound scan of the patient’s knee. Small, gentle stress on the knee reveals hypermobility. This is from the ligaments’ inability to hold the whole knee joint in place. Prolotherapy can be very successful in helping patients who had a knee replacement and still have knee pain. The treatment tightens the whole joint capsule. The treatment is explained below.

Our research Prolotherapy and Ehlers-Danlos Syndrome (hEDS) and Joint Hypermobility Syndrome (Hypermobility Spectrum Disorders (HSD)).

Prolotherapy is an in-office injection treatment that research and medical studies have shown to be an effective, trustworthy, reliable alternative to surgical and non-effective conservative care treatments. In our opinion, based on extensive research and clinical results, Prolotherapy is superior to many other treatments in relieving the problems of chronic joint and spine pain and, most importantly, in getting people back to a happy and active lifestyle.

In the Journal of Prolotherapy in 2013. The full research can be downloaded as a PDF file – Treatment of Joint Hypermobility Syndrome, Including Ehlers-Danlos Syndrome, with Hackett-Hemwall Prolotherapy.

Here are our bullet points:

Prolotherapy is the treatment of knee instability in patients with and without hEDS

In this video, Ross Hauser, MD discusses Ehlers-Danlos Syndrome and ligament laxity. Explanatory notes and a summary is provided below the video.

The main points from the video as it relates to ligament laxity in EDS and Prolotherapy

Alternative to surgery

Prolotherapy for Knee Pain

In this image of a patient receiving Prolotherapy injections into their knee, the dots on the skin represent those areas of the knee that should receive an injection. In this particular patient, there are 50 dots on their knee. Each dot would represent where each injection would be given. 

In this image of a patient being prepped for an receiving Prolotherapy injections into their knee, the dots on the skin represent those areas of the knee that should receive an injection. In this particular patient, there are 50 dots on their knee. Each dot would represent where each injection would be given. This is one comprehensive Prolotherapy treatment to the knee. 

Published research papers from our doctors at Caring Medical on Knee Disorders

Recent Prolotherapy knee research

A May 2020 study in the Annals of Family Medicine (3) made this simple statement at the conclusion of the research findings:

“Intra-articular dextrose prolotherapy injections reduced pain, improved function and quality of life in patients with knee osteoarthritis compared with blinded saline injections. The procedure is straightforward and safe; the adherence and satisfaction were high.”

A study from May 2020 published in The Journal of Alternative and Complementary Medicine (4) made these observations: “These findings suggest that dextrose prolotherapy is effective at reducing pain and improving the functional status and quality of life in patients with knee osteoarthritis.

Questions about our treatments?

If you have questions about your knee pain and how we may be able to help you, please contact us and get help and information from our Caring Medical staff.

This is a picture of Ross Hauser, MD, Danielle Steilen-Matias, PA-C, Brian Hutcheson, DC. They treat people with non-surgical regenerative medicine injections. Offices are located in Oak Park, Illinois and Fort Myers, Florida.

Brian Hutcheson, DC | Ross Hauser, MD | Danielle Steilen-Matias, PA-C

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References

1 Robbins SM, Cossette‐Levasseur M, Kikuchi K, Sarjeant J, Shiu YG, Azar C, Hazel EM. Neuromuscular activation differences during gait in patients with Ehlers‐Danlos syndrome and healthy adults. Arthritis care & research. 2020 Nov;72(11):1653-62. [Google Scholar]
2 Homere A, Bolia IK, Juhan T, Weber AE, Hatch GF. Surgical Management of Shoulder and Knee Instability in Patients with Ehlers-Danlos Syndrome: Joint Hypermobility Syndrome. Clinics in Orthopedic Surgery. 2020 Sep;12(3):279. [Google Scholar]
3 Shan Sit RW, Keung Wu RW, Rabago D, et al. A Randomized Controlled Trial. Ann Fam Med. 2020;18(3):235‐242. doi:10.1370/afm.2520 [Google Scholar]
4 Sert AT, Sen EI, Esmaeilzadeh S, Ozcan E. 3J Altern Complement Med. 2020;26(5):409‐417. doi:10.1089/acm.2019.0335 [Google Scholar]

This article was updated March 19, 2021

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