I was diagnosed with hypermobility syndrome (HSD) at age 24, following a car accident. My physical therapist said it was the reason I stayed flexible after the trauma. I scored 8 out of 9 on the Beighton scale.
In college, when I would sit by a computer for many hours per day, I developed neck and upper trapezius tension, which caused headaches and irritability if didn’t get at least two massages a month. I got so many massages over the years, with only temporary relief.
The HSD diagnosis explains why my muscles work so hard to maintain proper posture and therefore get tense. Being that I have no connective tissue disorders like EDS, most fitness teachers couldn’t accommodate me when teaching classes by ensuring I don’t overstretch. All they saw in me was a flexible and healthy-looking person.
When I developed tailbone and upper sciatic pain last year, I decided that I wanted to take action. Here are some of the steps I took that reduced my need for massages to just once a month!
DISCLAIMER: Use discretion and see a healthcare provider, as needed, before trying any of the supports in this article.
Pilates was my biggest game-changer. Pilates helps you develop a strong core with isometric exercises (focused on tightening targeted muscles without much lengthening of muscles or movement of joints). In pilates, there is less focus on stretching as there is with yoga. The moves help stabilize loose joints when done correctly, which can also help improve coordination.
I’m blessed to have a teacher who also works alongside an occupational therapist. In addition to working on a reformer, she taught me how to stand properly, with equal weight distributed on both sides, and to avoid clenching my glutes. She also used tools to help me build arches in my flat feet.
I tried group Pilates a few years ago, and my lack of control and tendency to fall into my joints just didn’t work out. Also, the teachers couldn’t really give me individual attention. I booked a private lesson this past year, and the rest is history!
If you’re looking into starting pilates, I highly recommend starting with a private lesson with a teacher who is knowledgeable in HSD and/or EDS. After a handful of private sessions, I began doing semi-private lessons to save money.
Orthopedic Car Cushion
Being short makes it hard to see out of my car when it comes to tight-space parking, especially with my visuospatial issues. My tailbone and upper sciatic pain actually kicks in when driving for long hours, too! Having to twist and stick my upper body out a window to parallel park aggravates my pain over time.
The cushion I use is firm, yet comfortable, bringing me up higher on my seat. This reduces my need to move in uncomfortable ways to see out of the car. An occupational therapist introduced me to it, and also taught me another ergonomic trick: ensure your wheel is ten inches from the chest, and use a foot rest if needed so you don’t have to lift your feet when switching between drive and brake.
My neck is hypermobile and a high-tension area. Part of this is because my trapezius has a lot of tension from so much typing daily, and from raising my shoulders when typing because of my height. I am also a side and stomach sleeper, and the wrong pillow hurts my neck, too, the next morning. My pillow is contoured and firm, but not overly hard. The one I currently use has reduced my neck pain a lot when I wake up every morning.
Ergonomic Desk Set Up
A yoga teacher once told me chairs were one of the worst inventions of Western civilization. Being that I am petite, average desks are not made for my stature. My feet don’t touch the ground, and I have to raise my shoulders when typing— two things that are not ergonomic at all.
I am fortunate to have a standing desk at my job now, and I also have a box on the ground for my foot rest. When I remember to switch between sitting and standing through my day, I have a lot less neck and shoulder pain.
Massages only provide temporary relief, but they’re too soothing to give up! I do one a month now, and it relaxes me and reduces some knots and inflammation. Thai massage is a great sensory experience for me in that you don’t have to remove clothing, and being stretched while receiving a massage feels good.
I recommend working with a provider who knows what EDS or HSD is, if possible, so they don’t overstretch your joints. My provider taught me something: a lot of tension is stress related. When we feel pain, we tense up all over.
The best thing you can do is to consciously notice the pain and where it is…and practice relaxing other body parts. Body scanning is paying attention to the muscles in sequence from the feet up to the head, and progressive muscle tension is slowly tensing and relaxing muscle groups from the feet to the head. Both help with managing tension.
Note that Thai massage is very deep tissue based, which may feel painful initially if you have many knots or are sensitive to deep pressure.
People with hypermobility and chronic pain often struggle with interoception, such as the inability to read the body’s internal cues. This could mean difficulty with bodily awareness and where the body is located in space. Sensory challenges and trauma can also contribute to feeling disconnected from your body.
Getting relief can be expensive. If you cannot afford professional services or do not have access to great providers in your area, there are a plethora of free and low cost resources available online that can guide you through how to start your journey at home. Using your best judgement, you can monitor what exercises and supports are appropriate for you and helping you to be more at peace in your own body.