Massage is not just a luxury for those of us with myasthenia gravis

Can, or should, you get a massage if you have myasthenia gravis (MG)? Will the use of oils or lotions cause a symptom flare?

I see these two questions floating around the interwebs frequently.

I’m lucky in that my Veterans Affairs (VA) benefits include this thing called “community care.” That’s when a VA provider writes a referral for the veteran to receive healthcare outside the VA network, with the VA still reimbursing the veteran or paying the community provider. Because of my diagnosis of fibromyalgia, I qualify to be referred out for “whole body health,” which includes specialties like chiropractic care, acupuncture, and massage.

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Benefits of massage

I receive weekly massage therapy for chronic pain that’s unrelated to MG. My typical sessions revolve around lymphatic massage and mobility to help with chronic pain and edema (swelling) in my legs.

Last week, I had an appointment with Sandy at Healingn Massage here in Wisconsin. I identified the areas where I’d been having pain, including my intercostal muscles, and noted that I’d been having difficulty breathing because of the air quality from the Canadian wildfires. At my appointment, Sandy spent the entire session working on my ribs and lower back.

Having a good massage therapist I can trust and who knows my body has been incredible. Sandy knows what my muscles feel like when they’re not inflamed or irritated, and she knows how to get me feeling better.

So my answer to the opening question — if folks with MG can or should get a massage — is not easy or straightforward. But I believe that those who can, should. After my appointment last week, I could breathe easier, and the tension in the surrounding muscles, from compensating for the weak ones, was greatly decreased. That’s one specific example of how massage has helped me with MG-related symptoms.

But other areas have gotten a lot of benefit from the regular massage, too. Many may see massage as a luxury or a treat, but I believe it’s part of helping me live my best quality of life by taking care of my body and managing pain without an additional medication.

Oils and lotions

A benefit of seeing my massage therapist on such a regular basis is that she knows what questions to ask and will verify if a new oil or lotion will bother me. My first session went over by 30 minutes because she took the time to ask me about any known issues with her most commonly used lotions and oils.

For example, some anecdotal reports suggest that lavender essential oil bothers some myasthenics because of its relaxing properties. I have no issues with lavender, but I know some who do — just as some have no issues using Epsom salts while others do.

What works for me, such as using oils or lotions that contain eucalyptus or peppermint, may not work well for someone else with myasthenia gravis. Even if we present with the exact same symptomatology, the treatments and what may flare those symptoms could be very different.

We’re all unique

I plan to continue with massage therapy for as long as my VA primary care provider will write the referrals — or beyond, if necessary, by finding a way to pay for it out of pocket. It’s become part of my treatment protocol for managing all my health issues. Last week’s appointment proved to me that it also helps with some specific aspects of MG.

Not a single massage I get from Sandy is the same. Each appointment is as different as the symptom presentation for those of us with MG. But that’s how it should be.

So should someone with MG get a massage? In my opinion, everyone who can, should. Take the time to discuss the benefits with your care team, research massage therapists in your area, and don’t stop looking until you find one you’re comfortable with. It’s not a luxury or an indulgence to want to be free of pain (or at least have a reduction in pain) without the use of another pill.

Note: Myasthenia Gravis 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.