Advice for Newcomers to Diagnosis of EDS

I was recently asked by Dr. Tennant’s group, the Intractable Pain Syndrome Research & Education Project:

  • What are the 6 things you’d recommend that have helped you with EDS, for someone who is newly diagnosed with EDS?
  • What would you tell them?

This is the advice I would give the newly diagnosed:

  1. The relief you initially feel at finally knowing what’s been causing you so much grief for so much of your life will quickly fade as the reality of dealing with an incurable degenerative illness sinks in.

It was hugely validating to receive my EDS diagnosis and I felt euphoric. (If this is the euphoria that recreational drug users feel from opioids, I can understand why they’d not want to stop.)

First, I wanted to shame all the doctors that hadn’t believed my pain by sending them documentation of my diagnosis.

Then, I also wanted to take it to every good doctor I’d ever had to show them they were right to believe my reporting and treat my previously inexplicable pain. It would also make those doctors aware of EDS and consider it as a diagnosis for other patients presenting with such strange pains.

Then, my happy high wore off as my daily pains kept doing what they’d always been doing, interrupting and nagging all day long. But now I no longer had the hope for a cure and realized I’d be dealing with worsening incurable pain for the rest of my life.

While it was great to finally be diagnosed, that it was with an incurably painful illness was depressing.

  1. Research and learn everything you can about this syndrome: the role and reach of the defective collagen our bodies make, how even the smallest bodily components are contained within a “bag” of connective tissue, and how the EDS defect at this structural level gives rise to all kinds of different pains and other strange symptoms.

The more you understand, the better you can manage your life with EDS.

You can learn how to prevent or at least slow down the worsening of symptoms, customize pain management techniques for your particular pain, and create your own “routine maintenance” to preserve as much function as possible.

  1. EDS symptoms will get worse as you age, so plan to “get in shape” for that decline instead of hoping and waiting to “get better” someday.

  2. With our loose ligaments and unstable joints, we have to “hold ourselves together” with muscle power instead of “leaning” on our joints (like locking knees or keeping legs crossed too long). It’s hard work and you’ll be exhausted by the end of the day.

Keeping your skeleton aligned can minimize the stress on joints and other tissues, but this takes consistent and constant muscle power during all your waking hours. Even sitting can be fraught with danger if you remain relaxed and still.

Then, pressure accumulates in your hip joints and in the vertebral joints of your spine, especially the neck. Such continuous steady pressure, even when slight, can gradually move joints out of alignment, and when bones shift from their proper position, they often pinch other tissues like nerves to cause pain.

To build the muscle strength necessary to keep your skeleton aligned, customized workouts (even chair exercises) will be your long-term “supporters”, even though it hurts like crazy to start any new exercise.

  1. Get used to setting limits with others for what you’re able and willing to do without wrecking your body. Instead of acquiescing to activities that will lead to pain flares later, learn to be firm and accept that your limits may displease or even inconvenience others.

You’ll have to set limits for how much you can participate and in what kinds of activities, for example:

  • Board games, usually yes, if less than about 1.5 hours.
  • Tennis, no, never! (even badminton still requires quick lateral moves that are dangerous for unstable knees)
  • Walk, usually yes, but with distance and/or time determined by the surface hardness/texture.
  • Sitting still in a theater to watch long movies, no.
  • Sitting to watch a long movie at a friend’s house with frequent changes of position and occasional “walks” to the kitchen, yes.
  1. Never leave home without support and sustenance supplies, whatever that means for you: quick energy food, water, pain meds, a pillow, back support, wrist braces, a warm jacket & sweats, sturdy shoes…

We all have to learn which particular props, supports, or aids are helpful for our particular situation. Some will be specific (certain braces for certain joints and certain activities) and others more general (like multiple changes of clothing and food), but it’s worth the effort to make a list of such traveling essentials and then collect everything in some sort of “to-go bag”.

I always keep a set of my pillows, blankets, supports, energy bars, and water in my car. I also keep a stash of pain pills in the purse I take everywhere (and hidden in the car and hidden in my “lunch bag”) so I don’t have to fear getting stuck somewhere in too much pain to drive.

This once happened when I went to a physical therapy session that included a wonderful massage of my stiff neck and then set out on the hour-long drive home. I started feeling a headache as I walked to my car and after half an hour driving I was in blinding pain. My relaxed muscles had allowed the vertebrae my neck to move into a position that was pinching nerves.

I pulled into a shaded parking lot to take a muscle relaxant and a pain pill and then sat there in misery waiting for the pain to ease so I could drive home. Of course, it got worse before it got better, so I was glad I wasn’t on the road.

It was an hour before the medications finally took effect and then I was able to drive the rest of the way home without further incident. Because I was in so much pain, the muscle relaxant plus opioid didn’t make me woozy but just eased the pain. I explained this in a previous post: Opioids + Pain != Euphoria

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