To stretch, or not to stretch, that is the question with my EDS
A columnist tries to understand why it hurts to lie flat
Sometimes when I’m lying down, I take stock of how my body feels. Many people do this as a technique to relax or relieve stress, but I’m not sure that works when, like me, you have Ehlers-Danlos syndrome (EDS). With EDS, doing a mental body scan makes you focus on points of pain or discomfort, which doesn’t exactly help to relieve stress.
On the other hand, it does allow me to get a sense of how I’m feeling and figure out the areas of my body that might need work or attention.
One thing I notice when I do this is that when I’m on my back, I’m much more comfortable when I cross my right leg over my left at the ankle. It isn’t comfortable when I do it the opposite way.
If I keep both of my legs flat, it stresses my right hip, because my hips feel crooked when they should feel flat and balanced. Lying flat should be a comfortable position, but it’s not for me. My best guess is that it’s related to muscle tension in my hips and lower back.
Those of us with EDS deal with a lot of muscle tightness, which might seem counterintuitive to people who aren’t familiar with hypermobility disorders. I get it. I used to think the same way. But now I explain to folks that my muscles tighten because they’re trying to compensate for my joints and tendons and ligaments that are too loose.
I think that’s what’s happening when I’m lying down. While my body should be in a neutral position, the muscle tightness in my back and hips is likely twisting the angle of my hips, which in turn is probably stretching those tight muscles, which is uncomfortable. If I’m right about this, then crossing my ankles would feel like a neutral position to me because my muscles aren’t being stretched.
So what do I do with this information? Is it better for me to lie down in a comfortable position? Or would it make more sense to let my muscles stretch a little to how they should be, even if it’s uncomfortable?
I think this is useful information for when I get a massage, as it can help guide my massage therapist.
Managing EDS can be like trying to put together a puzzle with constantly changing pieces. Just when I think I’ve figured out patterns, something changes. Yet it can be helpful to know when something feels different, as it helps me to manage my symptoms more effectively.
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
Rose OHara
My family is at least 6 generations with the rarest form of EDS - pEDS (Periodontal Ehlers Danlos Syndrome)
Would love some information on dealing with this type of EDS.
Thank you.
Rose OHara
Niagara Falls, ON Canada
R.L. Tipton
I'm over 60, also a [former] horseperson. Diagnosed at 58 with hEDS, I have the same problem with lying flat. EDS progresses with age, so I'm into the lower back/hip pain stage (as is my non-hypermobile husband). I wear a sacroiliac joint brace that helps. Standing is worse than walking, sitting can be tolerable except for Orthostatic Hypotension issues. I've seen several rather ignorant "medical professionals", and subsequently come to the high probability of Tethered Cord Syndrome being the root issue. Standard MRI won't show it.
The question now is "sick with it" or "sick of it"? The ignorance and gaslighting are at gargantuan levels.
Tonia Hall
I think a lot of us with hEDS hurt to lay flat, I've seen it mentioned many times before. It could be from a previous injury or just tight muscles, like you said.
You might want to ask this question at a subreddit I made just for hEDS, called "HypermobileEDS", just like that. There are a few subreddit for EDS, but mine is the only one with free speech.
Nancy
Your article is very timely for me. I have a few auto-immune diseases, including EDS and MS.This caused over 20 broken bones and ligaments for decades. But 30 years ago I ripped both knees… and ligaments one year after another…left, then right. I had to wait about 5 years in braces until ACL and LCL surgeries were Longterm successful. But with wobbly knees and MS, my once straight spine got a nasty curve from the first knee accident.
I visited a physiatrist this week hoping I’d get some advice on exercises (dos and don’t’s) to get my back and hip straight, but was only advised to get controversial injections for pain.
Speaking then to my PT, she told me I need to bend into my curve to stretch the side that bunched up when compensating for the looseness. I am SO confused!
Sara Umberger
In my experience lying on my back and sensing my body's reaction is not just helpful in making me aware of tightness but if I just let the muscles tighten without interfering in anyway eventually my brain and nervous system notice and correct the problem which is usually caused by habitual asymmetrical and dysfunctional habits of movement.
Terry Anderson
I also gave scoliosis which I think is due to my EDS. A botched back surgery added even more problems. I do not ever recommend back surgery! Huge, huge mistake.
When I lay on my stomach my back goes into spasms. Laying flat on my back is not comfortable for me either. It is hard for me to get massages because my back will go into severe spasms. The muscle tightness and imbalances due to scoliosis and trying to support my weak joints is brutal. I can sure relate to what you mean.
Elise Bender
My daughter who has hyper mobility has recently had a flare of bad headaches. I didn’t initially connect this to possibility of a subluxation in her spine. An integrative physician we are working with for her POTS mentioned that often the cervical spine can have subluxations as other joints and recommended a specific type of chiropractor for us to visit called NUCCA. This upper cervical chiro did a CAT scan on my daughter and sure enough her C1 and C2 were off balance. He could see that one leg was shorter than the other. A machine showed she was putting more weight on one versus the other. It might be worth having a chiropractor check out your alignment.
Linda Williams Crouse
I have both legs turning out when I rest, I also do the crossed ankle’s when laying down but soon uncross them into the hips turning out. They tell me to stop and put my legs side by side. I freaked them out when I was asked if I could have knees up then touch the surface. I did both at the same time rather that do it one at a time. “I’ve never seen that before, hey look over here” Made me wonder who was working on me and what they know or if I’ll walk out worse than I walked in. So I get it, stay strong !Lol