Latest EDS Research from PubMed NIH

EDS and Chronic Pain News & Info

Here I’ve collected several of the latest PubMed articles about EDS. They give proof to the fact the EDS is a painful condition and could be useful for informing doctors of the consequences of having this syndrome.

Chronic pain in patients with the hypermobility type of Ehlers-Danlos syndrome: evidence for generalized hyperalgesia. – PubMed – NCBI

Clin Rheumatol. 2015 Jun;

Rombaut L1, Scheper M, De Wandele I, De Vries J, Meeus M, Malfait F, Engelbert R, Calders P.

Chronic widespread pain is highly present in patients with the Ehlers-Danlos syndrome hypermobility type (EDS-HT), but up to now, evidence for generalized hyperalgesia is lacking. The aim of this study is to investigate whether pressure pain thresholds (PPTs) at both symptomatic and asymptomatic body areas differ in EDS-HT patients compared to healthy subjects.

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Considering the Emergency Room? Here Are Some Pointers to Keep in Mind if You Have Chronic Pain.

Finding Out Fibro

What to Do When You Have to Resort to the Emergency Room (When You Have a Chronic Illness)

A trip to the ER is no fun, no matter how you spin it. When you’re a chronic pain patient or someone with a chronic illness that can cause bouts of severe pain, it can be a complete and total nightmare.

A patient with chronic pain can help the Emergency Room staff to understand that their medical problems, especially pain, are a legitimate emergency by following a few guidelines and suggestions that will lessen some of the unpleasant drama of going to the ER.

Always bear in mind that the Emergency Room is a last resort, and Urgent Care will almost always turn away a patient with a chronic illness. Hospitals are so wrapped up in covering their asses legally that they have started turning away chronic pain patients much like Urgent Care does…

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Resource: DBT Interpersonal Effectiveness- Declaration of Personal Responibility

A complicated person, with a complicated life

Declaration of Personal Responsibility

Motivation of Self

  1. I act in a way that makes sense to me on some level.
  2. I respond to any situation in my own unique way based on my background and prior experiences.
  3. I am trying to get my needs met in the best way I know how.
  4. I am the only person who really knows and understands my needs.
  5. I am ultimately responsible for getting my needs met.
  6. It is okay to ask for what I want from others, although I may not get it.
  7. If I don’t get what I want, it is up to me to decide what to do next. (ex: negotiate, change my expectations, use contingencies, leave.)
  8. I accept that not everyone plays the game the same way by the same rules.
  9. People’s needs will inevitably conflict.
  10. All relationships teeter on what I am willing to accept versus what I can…

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Friday Fun – The Art of Group Blogging

Live to Write - Write to Live

Friday Fun is a group post from the writers of the NHWN blog. Each week, we’ll pose and answer a different, get-to-know-us question. We hope you’ll join in by providing your answer in the comments.

QUESTION: This week’s question comes from reader Kernan Manion, MD. He writes, “I’d love to hear how you – as a group – have decided to keep to a schedule, decide on a topic, and hold each other accountable.” Great question, Kernan. Thanks!

Jamie WallaceI have had the good fortune to be part of several group blogs and in each case team members take full responsibility for their own schedules, topics, and deadlines. Here at Live to Write – Write to Live, we are all professional writers of one kind of another, so we’re used to working independently, managing our time, and meeting deadlines. That said, one of the best parts…

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My Illness is NOT a Secret. But why should I explain it to you?

The Be Kind Times

invisible me

This is a photo of me… photo-shopped to make me grey and invisible, as that is how I am feeling right at this moment.  My illness is invisible, however I am not, and this seemingly gives people the right to ridicule me in public, it’s not fair and I want it to end.  Not just for me but everyone who goes through embarrassment like I did today.

I will not use my walking stick just because it provokes your compassion, I will not do anything to the detriment of my own independence, just so you can see my illness and not take the piss out of me.

You wanna know what happened?


Today, no less than 3 hours ago, I was in the Ramsgate Waitrose store very close to my home (that I traveled to, 1 stop by bus), getting a few bits for dinner this week.  I was…

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