Massage Therapy Helps Manage My Pain, but Insurance Won't Cover It - Ehlers Danlos News

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I’m so lucky to be able to have massage therapy every other week. While I wasn’t diagnosed with Ehlers-Danlos syndrome (EDS) until I was 22 and didn’t start regular massages until several years after that, I’ve since learned that they are critical to my well-being and pain management.

However, not everyone with EDS can access massages. They typically aren’t covered by private insurance here in the U.S., and finding a practitioner who is familiar with EDS, and the best way to treat it, can be difficult.

I’m lucky that my two regular massage therapists, first Heather and now Kim, were slightly familiar with EDS and willing to learn more. Heather was a nurse and massage therapist, and Kim loves to learn about physiology and the way the body is interconnected.

I’ve been to other therapists for various reasons, and I’ve found that if they’re not familiar with EDS, they tend to be less effective at relieving my pain. I’m not sure if this is because of my EDS, or if it’s normal for others, but my issues tend to be spread out rather than localized in one area.

For example, even if the pain is just in my hip, it usually ends up involving my back and abdominal and intercostal muscles, too. A large part of my treatment is figuring out where the main source of pain is located and breaking down the connections that are causing more pain. Not everyone is adept at this, and a therapist who is tends to be much more effective for me.

Hardly any treatments exist for EDS, and when one of the few that’s available isn’t covered by insurance, it prevents patients from being able to best manage their symptoms. I have an amazing therapist with very reasonable rates who gives me a discount for purchasing multiple sessions at a time. Not everyone has access to someone so knowledgeable, reasonably priced, and flexible.

For some, any out-of-pocket expense for treatment is out of reach. Should the fact that many consider massage to be an alternative therapy prevent patients from accessing it under insurance coverage? I don’t think so, and yet, that’s the reality.

I know some people who have found success in receiving sessions at a local massage school. Their prices tend to be extremely low, and it allows the students to learn. That can be a great option, but it shouldn’t be a last resort for affordable treatment.

I wish we could change this, but as anyone with a chronic condition knows, the insurance companies tend to hold the cards. Maybe one day they’ll recognize the importance of massage therapy when prescribed by a doctor, just like they do with traditional physical therapy. A girl can hope, right?

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Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.

• Author Details

An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses (Cherry and Spotty), and connecting with others in the rare disease community through her writing.
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An avid equestrian and educator, Karen has been a columnist at BioNews — the publisher of this site — since 2019. She was diagnosed with Ehlers-Danlos syndrome in 2009 after years of searching for a diagnosis that explained her symptoms. Karen enjoys working with her students, riding and caring for her two horses (Cherry and Spotty), and connecting with others in the rare disease community through her writing.
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