The purpose of this study was to assess the pain control methods in use by patients who have Ehlers-Danlos Syndrome (EDS), a group of connective tissue disorders, and their perceived effectiveness
This descriptive study involved 1179 adults diagnosed with EDS who completed an anonymous on-line survey. The survey consisted of
- demographics information,
- the Patient Reported Outcomes Measurement Information System (PROMIS) Pain-Behavior,
- PROMIS Pain-Interference, and
- Neuro QOL Satisfaction with Social Roles and Activities scales, as well as a
- modified version of the Pain Management Strategies Survey. Continue reading
Management of chronic pain in EDS – Part 3 – Nov 2018
Most cases of chronic pain in EDS are a mix of nociceptive and NP. [Neuropathic Pain]
As symptoms vary based on the diseases phase and in individuals of EDS, broad recommendations in a patient with EDS or JHS include: Continue reading
Management of chronic pain in EDS – Nov 2018 – part 2
This post continues from the first part, with more detailed descriptions of various types of pain that arise from our tissue fragility and from consequences of related genetic changes.
3.1 Chronic pain and EDS overview (covered in previous post)
3.1.1 Musculoskeletal pain
Nociceptive, joint pain is usually the first manifestation of pain in EDS. Continue reading
I have a lot to say about this long article, so I’m going to break it into 3 separate posts:
Ehlers–Danlos syndromes (EDSs) are a heterogeneous group of heritable connective tissue disorders involving defective collagen synthesis.
Patients with EDS are prone for chronic myofascial pain, apart from other comorbidities.
Although the initial pathology is commonly nociceptive, progression of EDS leads to neuropathies and central sensitization of pain signals. Continue reading
I posted this information in 2017, but I think it’s worth another look. It gives a good overview of what patients with this connective tissue disorder have to deal with.
Below is a collection of PubMed articles discussing 6 (there are many more) different medical problems that people with EDS have to deal with.
Problems with Local Anesthetic
Local anesthetic failure in joint hypermobility syndrome ; Alan J Hakim, Rodney Grahame, Paul Norris, and Colin Hopper; J R Soc Med. 2005 Feb; – full-text PMC article Continue reading
Common Tragedies Of Lax Joint Syndromes: Broken Hearts, Fallen Men, And Loose Women | Consultant360 | 02/23/15 (reposted from 2015)
This is an excellent and thorough overview of the numerous additional problems in addition to joint laxity found in EDS and other Connective Tissue Disorders (CTDs):
Joint laxity syndromes can cause many nonspecific and variable symptoms, even among patients with the same condition, making diagnosis difficult.
Many patients see numerous specialists before receiving a proper diagnosis, as many healthcare providers are only familiar with the more extreme forms of the disease (eg, Marfan syndrome, osteogenesis imperfecta) despite milder variants being more prevalent. Continue reading
Neuroimaging and psychophysiological investigation of the link between anxiety, enhanced affective reactivity and interoception in people with joint hypermobility – free full-text /PMC4196473/ – Oct 2014
Anxiety is associated with increased physiological reactivity and also increased “interoceptive” sensitivity to such changes in internal bodily arousal.
Joint hypermobility, an expression of a common variation in the connective tissue protein collagen, is increasingly recognized as a risk factor to anxiety and related disorders.
This study explored the link between anxiety, interoceptive sensitivity and hypermobility in a sub-clinical population using neuroimaging and psychophysiological evaluation. Continue reading
Can Interoception Improve the Pragmatic Search for Biomarkers in Psychiatry? – free full-text /PMC4958623/ – Jul 2016
This is another one of the articles I found about the extreme interoceptive sensitivity of people with hypermobility/EDS and how it is linked to anxiety.
Disrupted interoception is a prominent feature of the diagnostic classification of several psychiatric disorders. To examine the degree to which the scientific community has recognized interoception as a construct of interest,
we identified and individually screened all articles published in the English language on interoception and associated root terms in Pubmed, Psychinfo, and ISI Web of Knowledge. Continue reading
Interoceptive Sensitivity and Self-Reports of Emotional Experience – free full-text /PMC1224728/ – Sep 2005
I’m interested in how my anxiety relates to my EDS, so I plowed through this long article. It appears that “interoceptive sensitivity” (which is usually extreme in people with EDS) seems to be not just a discrete biomarker but also a driver of anxiety (a strong arousal focus).
People differ in the extent to which they emphasize feelings of activation or deactivation in their verbal reports of experienced emotion, termed arousal focus (AF).
Two multimethod studies indicate that AF is linked to heightened interoceptive sensitivity (as measured by performance on a heartbeat detection task). Continue reading