Getting massage therapy to ease EDS pain prompts strange sensations
Frequent massages are one way this columnist responds to muscle tightness
Over the years, I’ve found a few things that help me manage Ehlers-Danlos syndrome (EDS). Readers of this column likely know that one important thing is getting massages. It’s really the only thing that seems to help with the pain and with keeping my muscles from locking up into tight knots, which pulls my body out of alignment and causes even more pain.
It’s been a few years since I’ve gone a month without a massage, but sometimes life happens. I’ve been busy lately wrapping up another school year and getting the farm rolling as we head into summer, so I wasn’t able to get a massage for several weeks.
Spending that much time with tight, tense muscles pulling me in different directions is a strange feeling. When I’m very sore, I’ll often mentally block the pain, so when my massage therapist Kim starts working on me, I don’t initially feel discomfort. It doesn’t take long, though, for my muscles to fire up and show their anger.
One example is my ribs. I’ve previously described the strange sensation when my rib muscles are exceptionally tight. My right shoulder and hip get pulled together like an accordion while my left side is stretched out. This is a fairly common occurrence for me stemming from damage in my right shoulder due to an old injury. It can take a while for Kim to get the muscles to calm down, and that’s only the first step. Then they need to release their tension so my body can go back into alignment.
One way of doing this is with some gentle traction. Since my ribs pull my right hip up and my shoulder down, I usually ask Kim to hold my right ankle, which gives me something to brace against while I stretch out my rib cage. This is always an interesting experience, and sometimes it takes a few attempts to get the necessary result.
The first time we tried it during my last session, it didn’t work. Instead of the muscles releasing, they began to spasm, and Kim had to go back and do some more work on them. Then we tried again.
The feeling when the muscles release is so weird to me. They often tense a bit at first when I stretch, then it feels like I grew about six inches. As my rib muscles let go, I can feel my right shoulder rise and my right hip drop back down into its normal position. Suddenly, the entire right side of my body feels liberated.
I can actually see the muscles let go and my hip and shoulder realign. Afterward, with the muscles relaxed, I can move, stretch, and take deep breaths. It’s not uncommon for this to cause a domino effect to other areas of my body that also slip back into alignment as I move around. Each time something goes back as it should, I can feel the muscles around it unwind and relax.
I know the sensation of relief won’t last. Usually, about two or three days after I have bodywork, I start getting tight again. The key for me is having bodywork every other week to prevent my body from snowballing into a massive pain flare. I’m thankful to have a type of therapy that makes a difference, even if it feels weird.
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 another 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.
About the Author
Teresa
I discovered long ago that massages helped me more than anything. Of course it’s just a temporary fix. Now my spine has gotten so twisted over the years from not knowing what was actually wrong with me that sometimes now if I get too deep of a massage, I go into severe spasms. It’s such a brutal thing to deal with in my opinion. I wasn’t diagnosed officially until I was 60. I think I get angry after all of the things that have been done to me because of uneducated doctors.
Camille
Hello!
I’m 51 and 100% sure that hEDS is my problem!
I’ve spoken to my family Dr and he won’t even look into it. I seen a Chiropractor the other day who talked to me in length and did a few things with me who said he believes this is my issue as well and wants me to see a specialist. We only have one in all of Ontario and it’s a long wait but I’m willing. My Dr says htheres nothing they can do for me anyways bc im 51 and should have been diagnosed as a child!!??
Was it difficult to get the diagnosis at an advanced age???
Marinell
I was diagnosed at 52 and cannot go for a massage as I bruise too easily. I just go to the chiropractor to sort out my issues.
Wendy Thompson
I'm 45 & only received diagnosis just over 6 months ago! I hope you get answers & help soon x
Vall
Agree, massage therapy 2-4x a month is the foundation for all of my other EDS maintenance. I bought a machine that I can use on myself (not always possible depending on how the hands, neck, and shoulder are doing). It really helps keep my ribs mobile.
Lol stop describing my exact life every newsletter, it's freaking me out!
Karen Del Vecchio
That's one of the reasons that I really enjoy writing here - it helps all of us remember that there are others out there managing the same or similar things each and every day!
Harley
Thank you for sharing. I have the lived with the same right side tension most of my life, which I attributed to an old injury. Since I got a power wheelchair, I realised that it's actually due to holding up the weight of my arms! I recruit all the wrong muscles, including the whole right side, just to keep my shoulder together under the weight of my arm. Now I rest my arms all the time I'm not using them, and the pain has improved, and the tension is slowly reducing each day as my 38 yr old nervous system relearns. I hope that info helps you! Support your arms!
Karen Del Vecchio
Thanks for sharing! I'm so glad to hear that you're learning new ways to help manage your pain! I've also found that arm support can be an issue for me too - it's part of why it took me so long to find a standing desk that worked for me, as most of them don't support your arms. Finding one that did was a real game-changer for me.
Lana Careen Meisner
I have never considered massage. I have a lot of pain in the back of my neck shoulders and upper back. It's from having breasts much too large for my frame. I could see how massage could help that. After a lot of thought I have decided that reduction surgery is necessary but actually getting it will require jumping through hoops of red tape to get my insurance to cover it is going to take awhile. Until then massage will help. Than you.
Cathy
Lana, my sister & I both had breast reductions about 15 yrs. ago. When the plastic surgeon submitted the claim to insurance for coverage, he wrote it up as it was needed for back pain. I paid $100 co-pay for the surgery. Even with drainage tubes in for a few days after surgery, I could tell my lower back pain was gone!! best of luck to you. It was the best thing me & sis had done.
Saundra Kelley
Thank you for this article. I, too, am able to block pain up to a point, which with hEDS has proved to be my salvation. But let’s face it, there are times the pain bleeds through and wrecks havoc. It’s those times I fall down the rabbit hole and can’t get out. Meds only address a couple of layers at times like that, so perhaps massage will help.
Camille
Which meds have you been prescribed
April
Thank you for this article. I know the exact feeling. Massage has been the only thing to give some relief. If I go too long I feel like a silly puddy snapping back into place. I only wish my insurance would cover the cost. Take care
Rick Rappaport
thank you for all you’re doing!
J Tiney
I get a deep tissue massage once a week with deep slow stretching
I’m in no pain as long as I keep using this method. My psoas and hips are always tight but after worked on I’m good to go.