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The Spoonie Struggle


Jun 23, 2021

Episode 21: Managing Chronic Pain With Dr. Linda Bluestein

In this episode, Dr. Linda Bluestein discusses Ehlers Danlos Syndrome, Fibromyalgia, and chronic pain. Dr. Bluestein noted that it took her over 40 years to get diagnosed with EDS, and once her symptoms caught up with her, she made a career shift to help individuals with EDS. Shortly after she was diagnosed, she started two podcasts, Hypermobility Happy Hour and Bendy Bodies.

There are 6 types of pain include visceral pain (body organ pain), nociceptive pain (actual tissue damage), neuropathic pain (damage within the nervous system or coming from the nervous system), and central sensitization (the nervous system is no longer able to properly modulate symptoms), allodynia(when a stimulus is painful that is not usually painful), and  hyperalgesia (a lot of pain with something that is usually only slightly painful). Fibromyalgia is thought to be in large part due to central sensitization.

 

Dr. Bluestein does not believe that people with EDS also have FMS, but rather that the body no longer knows how to properly modulate and interpret pain and other signals. Pain in individuals with EDS can be caused from microtrauma, joints going past the range of motion they are supposed to, inflammation in joints, muscles being super tight, muscle spasms, POTS, subluxations, tendonopathies, small fiber neuropathy, MCAS, dislocations, and nerve compression. There is a lot of overlap of causes of pain in people with EDS. Research has looked at temporal summation of pain, wind up phenomenon vs health control group, NMDA receptor antibodies, and looking at the quality of the pain to figure out what the type of pain is. Finding out the type of the pain should be the beginning, as we should figure out specifically what the cause of the pain is in the body. EDS bodies can all be different, so further investigation for each individual is warranted. It is also important to note that there is physical and psychological pain,and  that impacts one another, as all pain is processed in the brain.

 

Common pain myths include that chronic pain is just acute pain but just longer and that with chronic pain always comes damage/the degree to which they have pain is the degree to which they have damage. It is important to catch pain early so that it doesn’t become chronic or centrally mediated pain.

 

With fibromyalgia, we think it is due to altered pain processing at multiple levels (neurons, spinal cord, areas of the brain). Pain processing works both going up and going down. Areas that can amplify pain signals are enhanced in FMS. Her opinion is that people don’t have both FMS and EDS, and that individuals with EDS have a lot of reasons from EDS to cause centrally mediated pain outside of FMS.

 

To minimize pain above and beyond medication, surround yourself with solution-focused resources, balance information gathering with other activities, beware of confirmation bias, check and verify information, be selective in who you interact with, look at the source, and engage in activities you enjoy. Don’t stop moving and exercising, look at small gains, look for little things to help you stay positive, practice gratitude, minimize catastrophization, and avoid the Boom or Bust cycle. To cope with pain, make sure to eat healthfully, reduce inflammation, and minimize intake of sugar.

 

 

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Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Dr. Clauw’s Talk About Chronic Pain

EDS ECHO

EDS Society

EDS Awareness

Managing Pain Before It Manages You

Dennis Turk's Pain Survival Guide

EDS Wellness

HMSA

EDS-UK

 

 

 

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