I was curling my hair when I dislocated a rib on the lower left side of my ribcage. The stay-at-home order was in its third or so week and I’d determined I would finally learn how to curl my hair with a straight iron. Never mind that I’m a 40-year-old woman who doesn’t know how to curl her hair, but that’s an entirely different matter.
I’d been dealing with this same rib for nine months. It’s called slipping rib syndrome and is fairly common among people with my condition, but I’d never had the rib dislocate quite like this. Usually, it just slides around a little, only partially dislocating. That’s called joint subluxation.
This time, the pain was intense and in the mirror, I could see the lower portion of my left ribcage was distended and swollen. There was constant dull pain and the rib was extremely painful to touch. I tried heat, then ice, then rolling on my rice sock to coax the rib back into place. There would be no point in going to the ER or chiropractor. If they got the rib back into place it would more than likely dislocate again before I got home. Plus, you know, we’re in a pandemic. Time, relaxation, NSAIDs, and heat/ice would eventually allow the muscles to relax and the rib to go back into place.
It took two days.
The underlying condition that brought about my rib misery is a genetic connective tissue disorder called hypermobile Ehlers-Danlos Syndrome (EDS) and May just happens to be Ehlers-Danlos Syndrome Awareness month.
EDS is a result of defective collagen, the main protein in connective tissue. Very simply, my body has all it needs to produce good quality collagen, but it simply doesn’t know how. And because there are different types of collagen, there are different types of Ehlers-Dalos Syndrome. Hypermobile EDS is the most common type. The vascular type of EDS is especially troubling in that it causes life-threatening complications.
Connective tissue is in nearly every part of the body from skin to ligaments, tendons, organs, eyes, ears, and more. As such, nearly every part of the body is affected by this defective collagen. EDS is an “invisible” syndrome in that you often cannot tell by looking at a person that anything may be wrong, but for most people with EDS, symptoms are always present and impact daily life.
The most common symptoms in hypermobile EDS are frequent joint dislocations or subluxations, pain, and general joint hypermobility. In other words, people with hEDS are usually freakishly flexible and bendy people. People with hEDS also very frequently have various co-morbidities such as Postural Orthostatic Tachycardia Syndrome (POTS) and/or Mast Cell Activation Syndrome (MCAS). I have Mast Cell Activation Syndrome but not POTS. Go me.
Managing the pain of Ehlers-Danlos Syndrome can be challenging and because there are many other disorders and syndromes that cause chronic pain, I’m sure there are plenty of you that contend with some form of chronic pain.
Based on lectures I’ve heard, research I’ve read, and the wisdom of my medical team which includes my primary care physician, physical therapist, occupational therapist, physiatrist, allergist, and various surgeons, I’ve developed my own strategies to deal with chronic pain. Perhaps some of these strategies will prove helpful for you.
Pain Reduction Strategies
Optimizing Available Tools
My toolkit includes various methods for reducing pain. For painful or swollen joints I alternate ice and heat, use over-the-counter pain medications to reduce pain and inflammation, tape or brace the affected joint(s), and wear compression garments to help keep my joints in place.
Keep in mind that whatever strategy you use to manage pain will only provide a percentage of pain reduction. What that means is that you cannot expect that any one method will totally eliminate your pain, but combing these strategies can provide relief.
For instance:
Ice/heat – 20%
Medication – 30%
Bracing/Taping– 30%
Sometimes I’m able to reach 90-100% pain relief and that’s always a great day.
Stress and Pain
I’ve learned that stress is like a volume button on pain. The more stressed you are, the more intense your pain will feel. Reducing stress will reduce your pain levels. I know that’s easy to say and harder to do, but it is worth spending the time figuring out where in your life you are feeling stressed and if there is any way you can reduce or eliminate that stress. A therapist or counselor might be helpful.
Sleep
Sleep is absolutely critical to reducing pain. I’ve learned there is a nasty cycle between pain and lack of sleep that gets set into motion when sleep is cut short. Like stress, sleep may be easier to talk about than actually do if you suffer from any sort of sleep disorder, but this may be an area where talking with a physician could prove beneficial.
The Mind is Powerful
Spending time in mindfulness practices, meditation, or contemplative prayer are wonderful ways to help reduce pain. The mind is far more powerful than we realize. As we train ourselves to focus on good things, we begin to focus less on pain. Meditation can feel strange and awkward at first, but with practice it allows you to step out of a hurried or frantic pace and into moments of relaxation allowing the mind and body to reset.
Exercise
Exercise is so very important for every single person, regardless of felt pain. For those with chronic issues, exercise will look very different from an able-bodied person, but it is still critical to wellbeing. Due to joint instability and pain, I’m not able to run or take part in any moderate or high-impact activities. Instead, I walk, use my stationary cycle, and work closely with a physical therapist on strengthening protocols written specifically for people with hEDS. I always feel better when I’m exercising regularly.
As with any awareness, the goal is to increase understanding and compassion. While those of us with hypermobile Ehlers-Danlos Syndrome move and function differently than most, we are still able to lead healthy and productive lives. Just know that there are often invisible issues and a little grace goes a long way.
