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.
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
The Landscape of Chronic Pain: Broader Perspectives – free full-text /PMC6572619/ – by Mark I. Johnson – May 2019
Here is a recent lengthy review of what’s known about chronic pain: the various aspects of various types of pain under various circumstances.
This article shows the folly of making any numerical one-dimensional measurement of chronic pain, which can arise from a variety of causes, vary greatly over time and location, and make such intrusive incursions into our inner lives.
This special issue on matters related to chronic pain aims to draw on research and scholarly discourse from an eclectic mix of areas and perspectives. Continue reading
Cancer patients not getting adequate pain relief – by University of Leeds – Sept 2016
Many terminal cancer patients are not getting adequate pain relief early enough, according to a University of Leeds study.
The researchers found that, on average, terminal cancer patients were given their first dose of a strong opioid such as morphine just nine weeks before their death. Yet many people with terminal cancer suffer with pain a long time before that, the researchers said.
So, now even cancer isn’t considered to be a serious enough problem to be medicated, even when the patients won’t live long enough to develop addiction problems. Continue reading
QIO Program: Beneficiary and Family Centered Care – Quality Improvement Organizations – a PDF document for people on Medicare
Here is an organization to whom you can direct your complaints about the lack of pain management and abandonment of care.
Quality Improvement Organization (QIO) Program
The Centers for Medicare & Medicaid Services’ QIO Program is one of the largest federal programs dedicated to improving health quality at the community level.
This network of experts in quality improvement…
…but not pain management improvement… Continue reading
To stop people dying, we must make it easier for them to live – By Daniel Mezrani – 28 April 2018
I decided it was time to reveal that it was not a heart attack or some other physical ailment that had claimed my father’s life, but suicide. My intention was not to shock, traumatise or evoke pity, but to start a conversation.
In many ways, I understand why a productive national conversation about suicide has eluded us for so long. The idea of someone taking their own life is fundamentally disturbing, and therefore fraught in the public forum.
It is often the subject of moralisation and reductionism, which are unhelpful at best and dangerous at worst. Continue reading
Patients’ experiences of chronic non-malignant musculoskeletal pain: a qualitative systematic review – Br J Gen Pract. Dec 2013 – free full-text /PMC3839392/
This is an excellent study, probably because it does not try to reduce all experiences to numbers like the pain scale, that probes what it’s like to live with chronic pain and finds that it’s a constant “adversarial struggle”.
The aim of this review was to synthesise existing qualitative research to improve understanding and thus best practice for people with chronic non-malignant musculoskeletal (MSK) pain .
Meta-ethnography is an interpretive form of knowledge synthesis, proposed by Noblit and Hare, which aims to develop new conceptual understandings. Continue reading
Systemic Manifestations and Health-Related Quality of Life in Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type – Sydney Medical School, Discipline of Biomedical Science – Krahe, Anne
Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type (JHS/EDS-HT) is a hereditary connective tissue disorder associated with both musculoskeletal and systemic manifestations.
There is increasing recognition of the significance of the non-musculoskeletal manifestations of the disorder, such as
- orthostatic intolerance,
- gastrointestinal symptoms and
- psychological features, Continue reading
The Consequences of Untreated Pain — Pain News Network – June 2017 – By Roger Chriss
Pain is an alarm signal requiring attention. Whether the pain lasts minutes or months, it demands a response.
To ignore pain is to invite serious consequences, from burned skin or an infected wound to a damaged joint or dysfunctional nerve. It is for this reason that healthcare professionals ask patients where it hurts.
Recent research found the consequences of untreated pain go farther and deeper than are generally recognized: Continue reading
This article goes into great detail outlining the consequences of hypermobility syndromes in children, causing chronic pain, significant disability, and a reduction in quality of life.
When flexibility is not necessarily a virtue: a review of hypermobility syndromes and chronic or recurrent musculoskeletal pain in children – 2015 Oct – free full-text PMC4596461
Chronic or recurrent musculoskeletal pain is a common complaint in children.
Among the most common causes for this problem are different conditions associated with hypermobility Continue reading
Who are you? The effect of pain on self | HealthSkills Blog | Feb 2015
Al isn’t very happy. He’s been told that his back pain, which he’s had for six months now, is not likely to go away. He’s been having treatments from physiotherapy, had a return to work programme developed by an occupational therapist, tried medications and injections but nothing has taken his pain away.
He’s slowly stopped seeing his mates, isn’t sleeping well, hasn’t been out fishing in months, and he’s even had trouble keeping from shouting at his boys.
Al doesn’t sound all that different from many of the men I’ve seen in pain management. Continue reading