Advice for Newcomers to Diagnosis of EDS

I was recently asked by Dr. Tennant’s group, the Intractable Pain Syndrome Research & Education Project:

• What are the 6 things you’d recommend that have helped you with EDS, for someone who is newly diagnosed with EDS?
• What would you tell them?

This is the advice I would give the newly diagnosed:

1. The relief you initially feel at finally knowing what’s been causing you so much grief for so much of your life will quickly fade as the reality of dealing with an incurable degenerative illness sinks in.

Unfit for Work: The startling rise of disability

Unfit for Work: The startling rise of disability in America | Planet Money – By Chana Joffe-Walt – March 2013

This may seem like a strange article to post for someone who’s on disability themselves. However, I know there are many, many people out there scamming our disability system, sometimes for eye-popping amounts.

• Scammers are the ones that give the impression that helping supposedly disabled people is a pointless waste of money.
• Scammers are the ones that will cause the system to go bankrupt.
• Scammer are the ones who cause our own painful conditions to be doubted and denied (for both disability and opioid treatment).

Yet we are the ones who have to shoulder the blame because we’re accused of being such scammers, both in disability claims and in getting opioids for our chronic pain. 

Neurological and Spinal Manifestations of EDS

Neurological and spinal manifestations of the Ehlers–Danlos syndromes – Henderson – 2017 – American Journal of Medical Genetics Part C: Seminars in Medical Genetics – Wiley Online Library – Feb 2017

This research review makes it very clear that people with EDS suffer a great deal of pain from the neck up, that EDS is a physically disabling condition, and that its effects are multi-systemic.

This is the article I will present to the new doctor that is taking over from the wonderful doctor who has been prescribing me sufficient opioid pain medication for the last 10 years.  They work in the same medical group and this new doctor has on occasion refilled my opioid prescriptions when my regular doctor wasn’t available, so I hope she will continue doing so.

Just reading this review crushes any hope I’ve had of ever “getting better” because there are so many physical issues that arise when our body structures are held together (or rather, not held together) by defective connective tissue.

hEDS Patients Face Many Physical and Mental Challenges

Young hEDS Patients Report High Number of Physical, Mental Challenges – BY JOANA CARVALHO, MSC – Sept 2019

“[A]dults with EDS reported that pain, fear, stigma, and negative experiences with health care caused them to feel the most limited in their lives. We are unaware of any similar studies obtaining patient reports on what the hardest part of hEDS is for pediatric patients,” the researchers wrote.

Moreover, previous reports have shown that adult hEDS patients often experience symptoms of certain psychological disorders, including anxiety and depression, which have been found to be directly correlated with physical symptoms of the disorder (e.g., fatigue, tiredness, and pain). 

When they say “directly correlated”, they mean anxiety and depression are also symptoms of EDS. I’ve posted extensively about this connection:  

Not All Pain Is the Same: Extent of High-Impact Chronic Pain

Not All Pain Is the Same: Characterizing the Extent of High-Impact Chronic Pain – painresearchforum.org – Epidemiological findings highlight the need for patient-centered care –  by Stephani Sutherland – Apr 2019

Chronic pain exacts a huge toll on patients, healthcare systems, and the economy. But the way that chronic pain is typically defined—by how long it lasts—provides little information about

1. the people suffering from chronic pain,
2. the degree to which they are affected, and
3. how to best treat them.

These days, chronic pain seems defined mostly by how many milligrams of an opioid need to be taken to make it bearable. The patient’s specific condition is considered irrelevant.

This is a sad side effect of medical pain: because it is only perceptible to the patient suffering from it, the easily accessible numerical measure of medication is used instead (scientific laziness, bordering on fraud). 

Three Things Clinicians Should Know About Disability

Three Things Clinicians Should Know About Disability – by Joel Michael Reynolds, PhD – AMA Journal of Ethics – Dec 2018

The historical relationship between health care professionals and people with disabilities is fraught, a fact all the more troubling in light of the distinctive roles clinicians play in both establishing and responding to that which is considered normal or abnormal by society at large.

I offer an overview of recent disability theory, outline a set of responsibilities clinicians have to disability communities, and provide recommendations for clinicians who hope to justly treat patients with disabilities and improve their care and health outcomes. 

Effect of pain on cognitive impairment in older adults

The effect of pain on major cognitive impairment in older adults – July 10, 2018 

Highlights

• Pain is a common problem, even in this relatively healthy community-dwelling cohort
• High pain levels are associated with increased risk of developing memory impairment
• Pain is not associated with developing attention or executive function impairment  [This has not been my experience -zyp]

Older adults frequently report pain; cross-sectional studies have shown that pain is associated with worse cognitive function. However, longitudinal studies are lacking.  

Suicide attempts by disability claimants double

Suicide attempts by disability benefit claimants double after controversial assessments introduced – by May Bulman, Alina Polianskaya – Dec 2017

Though this study was done in England, it shows how attempts to minimize disability claims due to chronic pain by coercing patients to “perform”, and claiming they are fit to work when they really aren’t, cause even more harm.

According to new analysis of NHS data from surveys taken in 2007 and 2014, nearly half of people surveyed on out-of-work disability benefits said in 2014 that they had attempted to take their own lives.  

Court Rules Chronic Pain Is A VA Disability!

Court Rules Chronic Pain Is A VA Disability – Military.com – Apr 2018 By Jim Absher

A recent ruling by the U.S. Court of Appeals for Veterans Claims may have a major effect on the outcome of many veteran’s disability claims. On April 3, the court ruled that pain, without any underlying disability, may be a valid reason for awarding VA compensation benefits.

This seems like a momentous change, yet I’ve only seen this one announcement buried on a site for military members.

Such a ruling by this huge government agency could affect many other healthcare organizations and be the beginning of a return to reason. 

What We Lose When We Undertreat Pain

What We Lose When We Undertreat Pain | Kate Nicholson | TEDxBoulder – YouTube

I’m not a big fan of getting information from videos, but this one is worth watching and sharing with people who don’t understand how well opioids can work and why we would want to take them.

Kate Nicholson was working as a civil rights attorney for the Justice Department when a surgical error left her unable to sit or stand, largely bedridden, and in severe pain for almost 20 years.

Using opioids as an appropriate pain management tool, she continued to function as a high-level federal prosecutor.