High Muscle Acid Accumulations May Be Reversible

High Muscle Acid Accumulations in Chronic Fatigue Syndrome May Be Reversible By Cort Johnson on August 2, 2014

Though this article is written in the context of CFS, burning exhaustion of muscles is also common in other syndromes, like Fibromyalgia and even EDS.


What’s causing these extreme muscle acid accumulations? Dr. Newton chose her words carefully. She noted that the degree of acid accumulation found is ‘associated’ with the degree of autonomic nervous system dysfunction; i.e., the more dysfunctional the autonomic nervous system was, the more acid ME/CFS patients muscles were accumulating.

People with EDS often suffer from POTS as well, which is also modulated by the Autonomic Nervous System. (See http://edsinfo.wordpress.com/tag/pots/)

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Depression, a view from the inside

Annabel Giles | Depression, a view from the inside.…

Annabel’s description of depression is remarkably similar to the experience of living with chronic pain.  Her thoughts and feelings and even suggestions for help mirror the travails of pain patients.

Poor Robin Williams. A long-term solution for a short-term problem. That’s what they say, isn’t it? ‘They’ being people who’ve probably never had to live with depression.

I’ve struggled with depression all my adult life. And anxiety. And life. For people with a brain chemistry like mine, the whole bloody business of just being alive is dangerous and difficult.

Let me explain, as best I can through my foggy brain, what having depression feels like.

I wake up very early every morning with a split second of OKness, followed immediately by a sledge hammer blow of despair to the solar plexus.

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Fact or Fiction: a Blood Test for Fibromyalgia?

Arthritis Foundation of WA | News & Events | FACT OR FICTION: A BLOOD TEST FOR FIBROMYALGIA?

Though this was posted last March, the article points out how skeptical we must be about good news, when scientific research suddenly shows supposedly “definitive results”.

A concern arose after an American biomedical company, EpicGenetic’s, announced an offer to provide “patients and their families with a conclusive answer in their search for a fibromyalgia diagnosis,” through what’s known as The FM Test. However it has been revealed that the research behind The FM Test, not only appears to be inconclusive, but also EpicGenetic’s seemed to have strong influences with the research conducted.

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Survey on the issue of women in chronic pain


Did you know that women not only suffer more from chronic pain but also tend to be treated less?  It’s a major health care issue–and we want to draw more attention to it. We are conducting a survey with our partner at For Grace–a Los Angeles non-profit that concentrates on the issue of women in chronic pain. Would you take five minutes to help us?   We are asking that only women fill out the survey.

We will announce the results on September 12 at the 7th Annual Women in Pain Conference, release them on the National Pain Report and notify each of you by email about what we found.

The danger of ignoring increasing pain

I may not be updating this blog for the next few days so I can save my energy for taking care of my old and probably dying dog.

I just found out from a blood test that our 15.5-yr-old dog, Kip, who still seems so healthy, is frighteningly close to acute renal failure.  This was the cause of the increasing back pain and hunched posture I had attributed to normal aging. All we can do now is restrict his diet and give subcutaneous fluids daily with the hope that this will “rinse out” the toxins that have accumulated in his blood. At this point we don’t know if it will pull him back from the edge.  I was up at 3 am cleaning up his diarrhea, so it doesn’t look good.

If only I hadn’t assumed his pain was just “normal” aging…

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Pain Patients Can Have Good Outcomes With Long-Term Opioids

Pain Medicine News – Pain Patients Can Have Good Outcomes With Long-Term Opioids

Long-term opioid treatment can produce positive outcomes in chronic noncancer pain when physicians prescribe it carefully to individuals who have low risks for addiction and overdose, according to the results of a systematic review.

The studies included in the analysis involved chronic noncancer pain that lasted longer than three months, opioid use for longer than three months … The studies focused on function and QOL, as well as outcomes of misuse, abuse, addiction, and falls and fractures.

The investigators found that long-term opioid use resulted in significantly improved function, and physical and mental QOL.

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The unique features of visceral sensation

Inside information – The unique features of visceral sensation

This is a free full-text PubMed article:

Most of what is written and believed about pain and nociceptors originates from studies of the “somatic” (non-visceral) sensory system. As a result, the unique features of visceral pain are often overlooked

In the clinic, the management of visceral pain is typically poor, and drugs that are used with some efficacy to treat somatic pain often present unwanted effects on the viscera

This review provides evidence of functional, morphological, and biochemical differences between visceral and non-visceral afferents, with a focus on potential nociceptive roles, and also considers some of the potential mechanisms of visceral mechanosensation.

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Chronic Pain: The Importance of Telling Our Stories

Chronic Pain: The Importance of Telling Our Stories by Carolyn Noel, Webmaster – PAINS Project

The truth is that people are suffering and – because the nature of pain usually forces people to limit their activities – they are often unseen.

Like wounded animals, people in pain withdraw and hide to nurse their wounds. Animals either die or get better, but we humans with our complex nervous systems get stuck in chronic pain, a waking nightmare of an in-between life:  pain won’t kill us, but it leaves us crippled.

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EDS as click bait on BuzzFeed!

EDS breaks into mainstream media – we’ve become click bait on BuzzFeed. This could get us more awareness than any of our medically oriented effort.  Let’s pass it on so this article succeeds with plenty of “clicks”:

31 Random Facts About Ehlers-Danlos Syndrome (prounounced AY-lerz DAN-lowz), also known as EDS.

It is a group of genetic disorders that are actually NOT rare – only rare to be properly diagnosed by a doctor who is knowledgeable about EDS. Every person has a different set of common symptoms, no 2 are exactly alike, because it is caused by faulty collagen – the glue that holds our bodies together. Spreading awareness is the key to helping more people get properly diagnosed.



The Empowered Patient: Get the Most From Your Medical Team

Here is an excellent practical guide for managing your medical care when you have EDS, written by our champion EDS advocates, Shani Weber and Heather Butler-Price.  Most of it can also be applied to dealing with other chronic illnesses as well.

You can find it on the EDNF.org website:

The Empowered Patient: Ways You Can Get the Most From Your Medical Team