Get Support for Dealing with Chronic Back Pain

Resources for the 21st Century

If you live with chronic back pain, you probably value the right kind of support from others when it is offered.  Problem is - most likely you already know this - many people don't realize chronic pain can be "invisible."   On the outside, you look "normal"  but  chances are most of the time you feel terrible, and/or are very sensitive to stimuli.

Getting the people around you to empathize and listen genuinely can be difficult, if not impossible.

Because high quality support and empathy tend to be in rare supply in our culture, coping with a chronic neck or back condition may be isolating.  And, if, prior to your diagnosis, you led a full and active life you, your family members, friends and co-workers have likely gone through an adjustment period, as well.

Support resources for chronic pain can take a number of forms - from providing accurate medical information to lobbying Congress for fairer, more appropriate laws, to offering a platform of communication you can share with others with similar challenges to yours.

Below are a few support resources in categories I believe are important to people dealing with chronic neck and back pain.  Please note that I'll be regularly adding to this list - so it's a good idea to bookmark the page, and check back from time to time.

 

1
Accurate Medical Information

 

Cochrane Back Group Reviews

The trend towards "evidence based" medicine means that diagnostic tests, as well as treatments, should  be based on hard data.  With so many businesses competing for the attention of health consumers these days, this is a good idea in my opinion.  But have you tried to actually read a medical study?  It can seem like Greek.

The good news is one does not need to earn a graduate degree in bio-statistics to be able to figure out which treatments are the most safe and effective.  Instead, you can turn to the Cochrane Back Group.  This world-wide volunteer organization reviews studies of medical literature on particular neck and back treatments and makes recommendations based on their findings.  They even provide a "plain language summary" of the results - enabling consumers like you and I to easily decipher the reports.

Disclaimer:  I am a consumer reviewer for the Cochrane Back Group.  This means I read the reports before they are published, and give the organization input from a consumer's perspective.  I've been known to write the plain language summaries. from time to time, as well.

The 10 HON Code Principles

With the age of the internet in full swing, most people turn to the web at some point for information or ideas for relieving back or neck pain.  

But buyer beware.  Not all health focused sites are the same.  One way you can tell if the information you're getting from an internet site is credible is to check for the HON Code seal.  All About.com Health sites have this seal - it means we commit to adhere to 10 principles of trustworthy health information communication.  To read these 10 principles, click the link above.

2
Patient Advocacy 101 - Establishment Forces

As Bob Dylan sings, "the times, they are 'a changin."

In the past (including the recent past), few options existed for people who could not get the relief they sought.  Unfortunately, for many, even the medical system proved to be a limited avenue.

Then finally in, in 2011, the Institute of Medicine (IOM) released a report acknowledging that the establishment forces have a lot of work to do.  The report, called, Relieving Pain in America:  A Blueprint for Transforming Prevention, Care Treatment and Research is free to download.

According to the IOM's website, the report was commissioned by the NIH as as part of the 2010 Patient Protection and Affordable Care Act (ACA) .  The ACA required the Department of Health and Human Services (HHS) to enlist the IOM  examining pain as a public health problem, and the report is the result of that partnership.

It's an official start, at least.

Addendum:  In 2014, the NIH Pain Consortum released a report that addresses the disparity between medical treatments for spine and patient outcomes.  Read my discussion of that report here.

3
Patient Advocacy 102 - Empowerment

I like to think that people power can't be beat.  I believe that's what the folks at WEGO think, too.

WEGO is a network made of and developed for health activists.  It's a great example of a new mind set that seems to be emerging - patient empowerment and self advocacy.

Bloggers on WEGO personally deal with all kinds of health problems - including but not limited to pain.  They offer their stories  and share their wins with others in similar situations.  They participate in opportunities to speak with pharmaceutical companies about their needs.  They win awards for making valuable contributions to society based on their experiences.

If you're interested in exchanging opinions and information with others, check out WEGO's opportunities page.  They have groups for caregivers, people with chronic illness, and more. 

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