Prolotherapy for Ehlers-Danlos Syndrome
In this article, Ross Hauser, MD and Danielle Steilen, PA-C, will lay the foundation for treatment of patients suffering from Ehlers-Danlos Syndrome with Prolotherapy injections. The treatment is designed to stimulate connective tissue growth and rebuilding in damaged painful joints. Patient outcomes are described below.
Medicine struggles for a better understanding of EDS
The plight of an EDS patient is simple in its understanding. He/she has a difficult to diagnose disorder and once diagnosed they now have a difficult to treat disorder. This has been a common theme for more than 100 years.
The world of an EDS patient – The real malady of Marcel Proust and what it reveals about diagnostic errors in medicine
Marcel Proust is considered one of the greatest authors of all time with his masterpiece In Search of Lost Time (Eng.) providing descriptions of a man suffering from EDS. During his lifetime Proust was was considered a hypochondriac not only by the numerous specialists he consulted but also by every literary critic who ventured an opinion on his health, among them several clinicians.
However, Proust’s voluminous correspondence, as detailed in its attention to his every symptom of In Search of Lost Time, provides valuable clues to Proust’s real, organic, and rare illness. Proust, in fact, was not only genuinely ill but far sicker than he even he believed, most likely suffering from the vascular subtype of Ehlers-Danlos Syndrome.
Ironically, Proust’s own doctors and his clinician-critics replicated the same kinds of diagnostic errors clinicians still routinely make today, shedding light on the plight of patients with rare illnesses.1 (This is from forthcoming research with a publication date of May 2016)
Typically, EDS may be thought of as an umbrella term for a growing group of hereditary disorders of the connective tissue mainly manifesting with generalized joint hypermobility, skin hyperextensibility, and vascular and internal organ fragility.2 It is also known as joint hypermobility syndrome (JHS). The connective tissue of individuals with this syndrome neither forms nor heals properly. Research from February 2015 admits that “standard treatment is always symptomatic (just treats the symptoms) and usually unsuccessful.”
New research still struggles to identify and treat EDS
The medical research seems to be stuck. A paper to be published in June 2016 says that:
- “EDS is a complex, multi-systemic condition that can be difficult to diagnose and poses challenges for healthcare practitioners who engage with EDS patients in holistic care.
- Improved healthcare provider knowledge of EDS is needed, and additional research on the co-occurring diagnoses with EDS may assist in comprehensive pain management for EDS patients.
- Implications for Rehabilitation EDS is a group of connective tissue disorders associated with defective production of collagen, which can dramatically reduce musculoskeletal functioning by symptoms of joint laxity and frequent dislocations eventually leading to disability.
Respondents to an on-line survey reported having to seek out confirmation of their EDS diagnosis with multiple physicians, which implies the difficulty many people with EDS face when trying to gain access to appropriate treatment.
Participants with EDS reported the most helpful methods for managing acute pain were opioids, surgical interventions, splints and braces, heat therapy, nerve blocks and physical therapy, while chronic pain was treated most effectively with opioids, heat therapy, splints or braces and surgical interventions.3
- With new research of the hazards and side-effects or opioids and other painkiller medications can we really call a lifetime dependency on medications the MOST effective treatment?
- Surgeries may be risky due to very sensitive inner organs as well as an inclination to sprains and dislocations.
- Nerve blocks may be effective for those with multiple failed treatments or “no other way,” to alleviate their pain.
Splints and braces, heat therapy, and physical therapy an underlying theme in these treatments leads to Prolotherapy Injections as an untapped source for joint stabilization for EDS patients
If we take splints and braces, heat therapy, and physical therapy treatments at face value we find a group of treatments that seek to stabilize a painful joint (hold it together with splints and braces), bring circulation to the joint, (heat therapy), stresses movement (physical therapy) to build up strength in the joint. These are all part of the therapeutic properties of Prolotherapy injections.
Ross Hauser MD explains Prolotherapy for EDS
Research for Prolotherapy
Our use of comprehensive Prolotherapy offers great hope to those with symptoms of hypermobility because it is designed to successfully treat the ligament and tendon laxity that accompanies EDS and JHS, as well as strengthen the joints in the body.
This from the research paper we presented 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
While traditional medical treatments including education and lifestyle advice, behavior modification, physiotherapy, taping and bracing, exercise prescription, functional rehabilitation and pain medications offer some symptomatic control, they do little in regard to curbing the progressive debilitating nature of the diseases.
The excessive joint mobility with its subsequent joint degeneration and multiple joint dislocations, can then lead the individual to seek out surgical intervention, which has suboptimal results in the hypermobile patient population versus the normal population. As such, some patients with JHS and EHS are seeking alternative treatments for their pain, including Prolotherapy.
Prolotherapy offers great hope for those with symptoms from generalized hypermobility because it is designed to successfully treat the ligament and tissue laxity that accompanies JHS and EDS.
Prolotherapy works by initiating a brief inflammatory response, which causes a reparative cascade to generate new collagen and extra cellular matrix giving connective their strength and ability to handle strain and force.
Prolotherapy has a long history of success treating ligament injuries, including patients with joint hypermobility.
Studies on Prolotherapy have shown that it eliminates chronic pain even in those patients who have been told by their medical doctor(s) that surgery was the only treatment option for their pain.
Some of the rationale for using Prolotherapy for patients with EDS and JHS include that it has:
- a high safety record, is comprehensive (all or most joints can be treated at each visit),
- is an outpatient procedure,
- is cost effective (compared to surgery),
- pain relief is often quick,
- and it provides joint stabilization.
Perhaps its greatest asset is the fact that this one treatment modality can handle most of the painful
musculoskeletal conditions that occur in individuals with EDS and JHS.
EDS patient testimonial treated with Comprehensive Prolotherapy
In this video, you will meet our patient, Louise, watch her brave battle with EDS, and see the courage it took for her and her family to travel from Europe to come to Caring Medical for Prolotherapy. Since her treatment she has been able to go back into sports she thought she would no longer be able to participate in. Louise is a wonderful example of the power of Prolotherapy against EDS. We are grateful for her and her mother’s wish to share their story.
Rebecca the dancer’s story
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1. Douglas Y. The real malady of Marcel Proust and what it reveals about diagnostic errors in medicine.
Med Hypotheses. 2016 May;90:14-8. doi: 10.1016/j.mehy.2016.02.024. Epub 2016 Mar 4.
2. Castori M, Morlino S, Ghibellini G, Celletti C, Camerota F, Grammatico P. Connective tissue, hlers-Danlos syndrome(s), and head and cervical pain. Am J Med Genet C Semin Med Genet. 2015 Feb 5. doi: 10.1002/ajmg.c.31426.
3. Arthur K, Caldwell K, Forehand S, Davis K. Pain control methods in use and perceived effectiveness by patients with Ehlers-Danlos syndrome: a descriptive study. Disabil Rehabil. 2016 Jun;38(11):1063-74. doi: 10.3109/09638288.2015.1092175. Epub 2015 Oct 24.