Living with chronic pain – from EDS

Living with chronic pain –  – April 20, 2017

I’m sure many folks with EDS can relate to Sydney’s struggle with her typical pain from EDS.

There are days that Sydney Davis can’t move from her bed, because her entire body hurts. “It’s exhausting to take a shower,” she said.

Davis likes to stay active. She climbs mountains, she plays sports and she wants to be a physical therapist.

Many folks with EDS seem to live with this contradiction: being active and being in pain. Many of us have increasing pain as we age precisely because we were too active for too long while we were still able.

But her world comes to a stop when her Ehlers-Danlos syndrome acts up.

It’s a pretty rare disorder and it was complicated to diagnose. According to National Organization for Rare Diseases, reported estimates of the disease range from one in 5,000 to 10,000 births, but many go without diagnosis.

It can take just a simple movement to knock something out of place.

Sometimes if she dislocates something, she can fix it herself. Other times, it takes multiple emergency room visits, surgeries and physical therapy.

Growing up she just thought she was super bendy.

She started thinking something wrong when the flexibility became painful. Her shoulders would dislocate — something not normal for a young girl. When she got into middle school and started playing sports more competitively, that’s when her and her parents noticed something wasn’t right.

When she’d get hurt she’d go to physical therapy, but it would take two physical therapists to hold her shoulder in place in order to do the therapy. Just moving her shoulder around would pop it out.

At the age of 14 she was diagnosed with Ehlers-Danlos syndrome type 3, but it took forever for a multitude of doctors to figure out what she had until a physical therapist suggested the diagnosis.

This is almost always the case for folks with EDS. However, I believe connective tissue disorders are beginning to get more notice – either because they are becoming more common or because they are becoming more commonly diagnosed, or perhaps both.

Basically the gist of Ehlers-Danlos syndrome is that you don’t have enough collagen in your connective tissue and connective tissue is kind of everything,” Davis said. “When that doesn’t work, a lot of things don’t work.”

“We see only a handful of EDS patients yearly,” said Dr. Don Martin, of the rheumatology department at Rockingham Memorial Hospital in Harrisonburg. “Orthopedics due to joint dislocations and genetics are likely to see more. That being said, they can be challenging to care for because they frequently have chronic musculoskeletal pain due to joint laxity.”

Davis started to become a frequent visitor to the emergency room — which means running into problems getting pain medication.

She goes through flare-ups, where she’s having shoulder dislocations but the hospital can’t fit her in with surgery for months. That means she’s in and out of the ER once a week getting her shoulder put back in until she can get surgery.

She’s often perceived as someone who is trying to abuse the system.

I have no choice to use pain medication,” she said.

This is exactly the truth for so many of us. I don’t know of anyone who needs opioids to control their pain to either want to take them or enjoy taking them (opioids don’t make you “high” when you’re in pain).

“It’s been within the last year that I’ve accepted that.”

And this is a difficult step many of us must eventually make. We resist and resist as long as possible, but in some cases, the pain really becomes intolerable to the point that death is preferable.

For pain patients, opioids are truly a last desperate resort.


2 thoughts on “Living with chronic pain – from EDS

    1. Zyp Czyk Post author

      Yup – and that’s exactly what I have. My mother, also with EDS at 87, is suffering from her latest excruciating pain and, even though otherwise in excellent health, she’s
      talking about suicide for the first time in her life.

      We had a tearful conversation in which I told her that I’d be devastated, but that I would understand and respect her decision.

      She gets only 3 Vicodin/day and each gives her only 2.5-3 hrs of relief during her 24-hr day & all night pain. She’s going to ask for more, but I worry they’ll deny her.



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