Chronic Pain, Hypermobility, and EDS: My Story
Click below to listen to the audio version of this post!Have you struggled with chronic pain in your life? Unexplained injuries? Anxiety? Are you hypermobile? Could all of those things be connected?
Many people with hypermobility and, more specifically, Ehlers Danlos Syndrome are not diagnosed until later in life. I was one of those people. And like many others, once I learned about it, many things that occurred earlier in my life made sense for the first time. And it just might for you!
Let’s start with my infancy. I was a “floppy baby.” My Mom will describe holding me as being similar to holding a wet noodle. I didn’t hold my head up by the time I was supposed to and was quite delayed on some milestones. I was referred to neurologists for testing, and nobody had answers. The neurologist told my Mom he’d not seen a baby be that floppy and then catch up on milestones, but I did just that.
Throughout my childhood, I had quite a few joint injuries that couldn’t be explained. Injuries that were not broken bones, didn’t result from significant trauma but caused pain for months. I remember being teased by my family that I just “liked the attention.” As a teenager, I flipped a bicycle, landed on my thoracic spine, and had nerve pain that lasted over a year. I remember being puzzled that a cool shower felt like burning hot water on that area of my back for a long time after that. I learned to “toughen up” and push through a lot of pain since there was rarely anything found when I was examined or on imaging.
After having my first job as a teenager, I remember coming home from work and needing to take ibuprofen to fall asleep because my legs and back ached so badly. I frequently had back pain but was told it was expected with menstruation and just something to get used to. I had a lot of GI issues throughout my teen years that continued into adulthood. Anxiety crept in during those teen years as well. I was flexible and would bend backward and touch my feet to my head. I could make people cringe by pulling my arm and seeing the skin at the shoulder joint suck inward, but that just seemed like one of those things like crossing your eyes or wiggling your ears.
I picked up weights for the first time when I was about 17, and I loved how it felt. I began doing some workouts (I had no idea what I was doing) and started strength training. By the time I was 20, I was strength training 5-6 times per week. I never went more than a few days without it because then things would start to hurt again. It appeared I was addicted to fitness from the outside, but in reality, I was addicted to not being in pain. I was addicted to sleeping well, having much less anxiety, and functioning better. I learned everything I could about fitness and nutrition and cleaned up my diet. I was feeling great. I went to college for nursing and started a career helping others in a very fast-paced cardiac unit in a large city hospital.
Fast forward to having kids. After the birth of my second son, I had uterine prolapse, diastasis recti, a ventral hernia, an enterocele, and a rectocele. After I had a 6-hour reconstructive surgery to put all my organs back in place, I began asking many questions. I was eventually diagnosed as being hypermobile and then as having Ehlers Danlos Syndrome.
I hadn’t heard much of EDS at that point but dove into learning all that I could. Then, finally, SO many things began to make sense. All the things I mentioned above about my body throughout my youth were explained for the first time.
A little note on terminology: EDS is a connective tissue disorder. There are 13 types of EDS, with the hypermobile EDS being the most common. All of the types have hypermobility associated with them but have other varying criteria associated. It is also important to note that EDS and joint hypermobility are on a continuum. They used to refer to one end of the spectrum as “benign joint hypermobility,” now called joint hypermobility (without other symptoms), and on the other end lies EDS. You can also have joint hypermobility syndrome, which is joint hypermobility with different symptoms but without the criteria of EDS. But let’s not get caught up in the weeds on all that. It’s important to understand that being hypermobile doesn’t necessarily mean you have EDS. One type of EDS can be very different from another type of EDS. And even within the same types of EDS, there can be a lot of variability in how the person is impacted and what symptoms they have.
We have connective tissues in every system of our body, so having a connective tissue disorder impacts much more than just our joints. However, this is where a lot of the focus lies in terms of hypermobility. I’m going to list some other body systems and some things that can be associated with hypermobility. This is not by any means an all-inclusive list, and any of these things can occur without hypermobility or EDS. That may seem confusing, but that is where the word “syndrome” comes into play. A syndrome is a collection of symptoms that, when correlated with one another, may represent a disease or disorder.
With the musculoskeletal (bones and muscles) system, there is a high prevalence of chronic pain, joint subluxations, dislocations, joint hyperextensions, the balance may not be as good, and proprioception (knowing where your body is in space) can be off. In addition, there may be cranial cervical instability, SIJ issues, TMJ, or flat feet, to name a few. Sometimes writing can be difficult because the fingers may hyperextend when holding pens/pencils.
With the nervous system and cardiac systems, there can often be POTS (postural orthostatic tachycardia syndrome), dysautonomia, and chronic fatigue syndrome. In addition, there may be Chiari malformation or a decrease in GI motility. Orthostatic hypotension or low blood pressure can also be issues.
The skin will often be smooth, soft, and stretchy. It may bruise easily, wounds may not heal as well as for others, and scarring may be more pronounced. Sutures often do not hold in the skin as well as with “normal” skin. There can also be frequent itching and allergic-like reactions, especially if the person also has MCAS (Mast cell activation syndrome).
The eyes and teeth can also be impacted. Local anesthesia like lidocaine may not work as well. Anxiety is more common among this population. The point here is that the impact is widespread and that diagnosis can be complicated. To my knowledge, hEDS is the only one of the 13 types that they do not have a genetic test for and cannot diagnose with absolute certainty.
There’s a wide range in how people with EDS are impacted and able to navigate their lives. I’m honestly glad I didn’t know I had it until later in life because I was forced to live normally and to push through things that I otherwise may not have. I intuitively learned a lot about what my body needed, even if I didn’t understand why at the time.
Here are some of the biggest things I’ve found helpful or learned about my own body over the years:
I require more sleep than others at times.
I need to strength train on a very regular basis- ideally 5-6 times per week to feel my best. Paying close attention to form, technique, and gradually building in weight has been very important.
Practicing various forms of movement and incorporating isometric strengthening and work in the end ranges of motion has been very helpful.
Avoiding alcohol, grains (especially gluten and corn), and limiting caffeine have helped my GI system.
Drinking a LOT of water and adding LMNT packets (or whatever salt you’d like- I find these to taste great and not contain corn or gluten) has helped tremendously with dizziness, orthostatic hypotension, and energy levels.
Self-massage work using a softball is helpful with muscle discomfort.
The most important things I’ve learned are to advocate for myself and my needs, listen to my body, and take care of it. If any of these things ring true for you or if you are interested in learning more about hypermobility, I suggest picking up the book Disjointed which dives deep into every system of the body and is an excellent resource for anyone who is hypermobile or who has hEDS.
When I met Andrew and saw how hypermobile he was, I assumed he must also have EDS. He saw a geneticist and was diagnosed shortly after. He’d also learned a lot of the things I had about the body and had experienced many chronic pain and injuries. Navigating a lot of these issues together has been great. It can be difficult for others to truly understand what we experience and feel. However, we can provide a lot of support to one another because of our unique situations.
*This is information about my personal experience with hypermobility and EDS and is not intended as medical advice. As always, discuss your medical concerns with your medical provider*
