Pain and Ehlers-Danlos Syndrome (EDS): A Guide

Pain and Ehlers-Danlos Syndrome (EDS): A Guide – Joint Issues – from

Why Write About Pain

Pain is debilitating. Pain can permeate many aspects of our lives. Pain can change the course our life takes and cause long-term psychological effects. We all deal with chronic pain in a way that we tailor to our individual circumstances.

My hope is that this article helps you to find your own path for dealing with your individual pain and to encourage you to make informed decisions and ask questions when something isn’t working for you.  

As patients, sometimes we need to be our own advocates. We need to speak up for ourselves.

In order to be heard, sometimes it is necessary to understand how the doctor views a patient who comes in with chronic pain. What questions should you ask? What is the best way to describe your pain? Are you open to using multiple approaches to pain management? What is a pain scale, and is it subjective or objective? What options do you have for pain management?

I hope to address these questions as best as I am able to this early on in my diagnosis. I will be referencing multiple sources I have found to be comprehensive and reliable, along with sources that I found personally helpful from fellow patients

This article is a lengthy one.

Go ahead and read my attempt at offering insight into the world of options for pain management and the effects of chronic pain. I’ll be doing quite a bit of quoting interspersed with my own thoughts, because I find it difficult to focus for too long due to brain fog. Are you still with me? Just kidding…a little lame brain fog humor there before I get serious below.

Psychological effects start prior to diagnosis, and they are not just caused by chronic pain. “It is thought that EDS is under-diagnosed due to the overlap of symptoms with other illnesses, general aches and pains, and the complexity of the effects of the connective tissue disorder. [Significant] stress often results from a patient’s journey towards diagnosis and counseling can provide validation for a patient’s experience of symptoms that may have been written off as malingering or hypochondria in the past.”

This is truly a very long article with excellent information – worth a read in its entirety:
Pain and Ehlers-Danlos Syndrome (EDS): A Guide – Joint Issues


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