I posted yesterday about how little social and cultural factors seem to be included in assessing and managing pain, and I had hoped to find some papers to discuss today. Events conspired and I have failed in that endeavour, so this post is, unusually for me, almost entirely my opinion.

So, sticking my neck out, why do I think the sociocultural context needs to be included when someone presents with their pain problem?

Well, the first thing that springs to mind is how has that person has found their way to a treatment facility - how did they get referred and by whom? To present for treatment means that at some point, this person has decided the pain they are experiencing is undesirable, and something needs to be done about it (whether that 'something' is diagnosis, elimination or confirmation of its impact). This decision to seek help seems to be based largely on whether it's 'normal' or 'expected' in the culture in which the person lives.

Let me give you an example: and yes, it's perhaps a little outrageous, and yes, it does relate to acute pain!
In one group in New Zealand society, body piercing and suspension is one way to generate a 'natural high'. The individual and his or her supporters (usually members of the same social group) congregate and encourage each other through the process of suspending the body from large hooks inserted through the skin of the back. As the process continues, some of the participants begin to swing their bodies from the hooks, and I've watched one participant swing and run across a stage to gain more momentum. Although the physical trauma is clear and pain is experienced as the hooks are initially inserted, over the 10 - 20 minutes of the process, these individuals start to feel euphoric and describe the feeling as 'bringing me closer to a spiritual plane', 'overcoming my physical self', 'getting in touch with the inner self'.

The practice of body piercing is ancient, and an accepted part of many cultures including Sri Lanka where it forms a part of a ritual to the Hindu god Murugan, and the Phillipines where ritual re-enactments of the crucifixion, complete with nails piercing the hands are performed on Good Friday. Tattooing is also an accepted part of many cultures including New Zealand Maori and the Pacific Islands.

For many of us, the thought of submitting to painful procedures as a recreational activity is just not something we would ever do. However, we may participate in weekend sports - netball, rugby, skiing, running, weight-training...and sustain pain with the 'support' of our friends!

So it's not surprising that if our willingness to experience acute pain can be influenced by social and cultural factors, treatment seeking for persistent pain can also be influenced.

Two common pain problems come to mind: the headache and the backache. Headaches are usually managed with simple analgesia and a quiet night or a walk. Backaches - well for many of us (around half of those that have an episode of back pain in a year (Walker, Muller & Grant, 2004) we will seek health care from a GP or chiropracter or similar. If we don't initially attend, our families and friends or employers will suggest we do if our function is affected. Who we see will be influenced by our culture - in New Zealand, it'll be a GP or physiotherapist or chiropracter; in rural China, it will more likely be a practitioner of traditional chinese medicine, or an acupuncturist.

The impact of even our acute pain on our lives will depend on our social context - our work, whether we live alone, the responsibilities for household tasks or caring for family members. And most especially, our pain behaviours will be influenced by others around us - our nearest and dearest strongly shape the kinds of things we do when we are sore (e.g. Smith, Keefe, Caldwell, Romano & Baucom, 2004).

And these are the things that we may well miss assessing if we don't meet the person's family (how many people attend a pain assessment alone, without any family present?), or talk to their colleagues. What's more, we don't typically include these people in management either - despite our knowledge that people changing behaviour really need to have the support of those who see them every day, especially in the period immediately after a pain management programme. In New Zealand anyway, ACC claimants receiving compensation for an accident rarely have encouragement or funding to enable their family members to also be included in intervention - even when roles have changed significantly, or the relationship is under strain. The 'claimant' is the person with the problem - even when we know that people live within a family, community, social, sporting, church system.

Tomorrow I hope to post on some of the factors to assess when considering the sociocultural and contextual factors in a person's pain experience. If you've enjoyed this post, and want to read more - don't forget you can subscribe using the RSS feed button at the top of the page, or you can simply bookmark the blog. And I love comments and respond - even if you don't like what I have to say!

Smith, S. J. A., Keefe, F. J., Caldwell, D. S., Romano, J., & Baucom, D. (2004). Gender differences in patient-spouse interactions: A sequential analysis of behavioral interactions in patients having osteoarthritic knee pain. Pain, 112(1-2), 183-187.

Walker, B. F., Muller, R., & Grant, W. D. (2004). Low back pain in Australian adults. health provider utilization and care seeking. Journal of Manipulative & Physiological Therapeutics, 27(5), 327-335.

I just found this artifact of life before computers on www.stressrelatedillness.com.. Makes a good lead in for what I've got for you today: an interesting, tongue in cheek essay that you might enjoy too, in todays' New York Times Magazine. I guess this means I'm emerging from my murderous funk: 

 The Way We Live Now by Peggy Orenstein

Using cognitive behavioral therapies in pain management isn't really rocket science, it's simply being aware of the principles of learning from both a cognitive (thinking) point of view and a behavioural point of view. It is, however, complex - by that I mean, there are many threads to systematically follow and actively manage.

There does need to be a fairly large emphasis on assessing or understanding (or formulating, if you prefer psychological language) the factors that are working together to influence the person's presentation. A formulation is simply a set of premises or hypotheses that, if they are tested and found to hold true, help to explain why this person is presenting the way they are, and to predict how they might respond in certain situations.

In chronic pain management, this means incorporating biophysical or biomedical elements, along with psychological and social elements. The complex blending of all these factors is what gives each individual a unique presentation and a unique set of concerns. And this is why it's important never to think there is a 'standard' or routine way to help people with chronic pain develop ways to cope and move forward. 'Cookie cutter' or 'recipe' methods simply won't work as effectively as an individualised approach.

My main concern currently is that the biomedical/biophysical and psychological aspects of assessment are fairly well covered in many settings - the aspect that is least well assessed and addressed is the social. 'Social' covers an area of influence that begins with interactions between the individual and his or her family, through to the influence of mass media and systems of governance and policy within a society. I think in New Zealand anyway, the psychological assessments are becoming over-emphasised, and the lack of emphasis on roles, function, interactions

Today let's look at the words of people experiencing chronic pain - a great reading is Mandy Corbett, Nadine E. Foster, Bie Nio Ong's paper 'Living with low back pain—Stories of hope and despair'.

It incorporates the narratives of six people experiencing chronic pain, and themes that emerge include the fluctuating emotions of hope and despair. A number of linked themes emerged which influenced the extent to which people oscillate between hope and despair, the most salient of which were 'uncertainty’, ‘impact on self’, ‘social context of living with pain’, and ‘worry and fear of the future’. It is clear from the narrative accounts that it is not only just physical pain that the back pain sufferer must endure, but also that the psychosocial implications pose an added and often complicated challenge.

'They [others with back pain] go through what
I’ve been through. They’ve got to come through
it all: the stress, the anger, er...the feeling of
..er.. uselessness, and it can take a toll on a
marriage and a family so bad, to the point that,
that person may not have a family in 18 months,
four years'

'You know, I can’t have one
day a week off. I’ve got to do full-time and I’m
finding it very hard and I’m frightened that I’m
going to do it because I have to, but then I end up
getting worse and I just can’t cope. What do I
do? Because that worries me. I can’t go off sick. I
can’t afford to go on half pay. So .. so that’s a
real dilemma.'

'He positions himself as a social persona
who contributes both to his family and to the
community, and re-affirming himself in this way
forms the foundation for a generalised hope where
he can have faith in the future'

Can we spend a while listening to the social context of the people we work with? Considering both the impact and the influence of the wider social factors that abound when an individual experiences their personal pain.

More tomorrow on the social context of pain.

Corbett, M., et al. Living with low back pain—Stories of hope and despair. Social Science & Medicine (2007), doi:10.1016/j.socscimed.2007.06.008

  it had been a natural high for quite some time. i found sobriety invigorating and all was well.
  a trip to the dentist.
  a root canal. the initial anasthetic.
  the prescription for 8 vicodin. 18 mos sober, but i had a prescription.
  my wife has a prescription, but i had stayed out.
  a few months later i broke a rib.
  a prescription for 30 vicodin. then 30 more.
  then they cut me off...
  but get this and this is an i shit you not
  godshot
  my wifes prescription was screwed up in this fashion..
  instead of sending her (in the mail) 30 vicodin
  they sent her 300.
  it was obscene.
  the electricians came and we had to empty most the furniture out of the room where she hid the pills
  and they were easy to find.
  it was on.
 there were days i took 1
there were days i took 5
objectively speaking
more than 1 is a waste.
it went on for months until i confessed to the wife
she was pissed
i'm an addict and i share who i really am with god and another person./
i went on still/
she doled them out and i was lifting weight just enough to keep my manboobs at bay and then....
i hurt my back.
this was around oct 2007.
i got my own prescription and i truly believe that vicadin caused me to hurt my back and caused me to GET MY OWN FUGGING PRESCRIPTION.
  i just emailed it in
once a week
30 vikes.
and was it ever on.
and i was dreaming and dialing just now
my grandsons voice was there
 he called me "great grampa"
and i said "hey boy" in that funny voice that he liked
and his mom took the phone from him
and it was on
i woke up and grabbed a beer
i started drinking again
i started drinking again
the worst thing is my self esteem
and i still have the prescription but the drinking cut the vicodins vicadins down to size 2 a day
i began a 1 a day regimen
but on the second day i crashed
on the third day we went to a concert
i'll bet i took 3
or 4
today i took 1
fuck

I am in the process of dealing with multiple orthopedic conditions, FMS and chronic pain.  To help combat my physical issues it was decided collectively by my doctors and myself that an assistance dog would be of benefit to me.  I am in the process of training my own assistance dog under the direction of a professional trainer.  Follow my blog to see where our journey takes us...........

If this was in Australia I would be dreaming!! Branch of Government: New Jersey Assembly
Title: Assembly Bill 4208
Summary: Designated the Reflex Sympathetic Dystrophy Syndrome Education and Research Program Act to promote public awareness, the value of early detection and treatment, and to promote research.
Sponsor: Panter and Munoz
Latest Action: 12/17/2007: To Governor

STATE OF NEW JERSEY

212th LEGISLATURE

INTRODUCED MAY 14, 2007

SYNOPSIS

Designated the "Reflex Sympathetic Dystrophy Syndrome Education and Research Program Act."

CURRENT VERSION OF TEXT

As introduced.

An Act establishing a reflex sympathetic dystrophy syndrome education and research program and supplementing Title 26 of the Revised Statutes.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. This act shall be known and may be cited as the "Reflex Sympathetic Dystrophy Syndrome Education and Research Program Act."

2. The Legislature finds and declares that:

a. Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, is a debilitating and progressively chronic condition characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch;

b. More specifically, RSDS is thought to be a nerve disorder that generally occurs at the site of a minor or major trauma injury, but may also occur without an apparent injury to the afflicted person;

c. While the causes of RSDS are unknown, the syndrome is thought to be the result of damaged nerves of the sympathetic nervous system;

d. The disorder is unique in that it simultaneously affects the nerves, skin, muscles, blood vessels and bones, and if untreated, can result in permanent deformity and chronic pain;

e. RSDS is often misdiagnosed because this condition is either unknown or is poorly understood; the prognosis for patients suffering from RSDS is generally much better when the condition is identified and treated as early as possible, ideally within three months of identifying the first symptoms;

f. If treatment is delayed, the disorder can quickly spread to the entire limb, and changes in bone and muscle may become irreversible, resulting in limited mobility, atrophy of the muscles and eventual permanent disability of patients; and

g. Since a delay in diagnosis or treatment for this syndrome can result in severe physical and physiological problems, and early recognition and prompt treatment of RSDS provides the greatest opportunity for recovery, it is in the best interest of the public to establish a program to educate both individuals and medical professionals regarding this debilitative condition and to promote research to accurately identify, diagnose and treat RSDS.

3. As used in this act:

"Commissioner" means the Commissioner of Health and Senior Services; and

"Reflex sympathetic dystrophy syndrome" or "RSDS" means a debilitating and progressively chronic condition characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling and extreme sensitivity to touch.

4. The commissioner shall establish a reflex sympathetic dystrophy syndrome education and research program in the Department of Health and Senior Services. The purpose of the program is to promote public awareness of the causes of RSDS, the value of early detection and the diagnosis of and possible treatments for the syndrome, and to promote research, through public and private sources, to accurately identify, diagnose and treat RSDS.

5. The Department of Health and Senior Services shall:

a. establish a public education program through the department's website, to promote RSDS education, which will enable individuals to make informed decisions about their health, including, but not limited to the following elements:

(1) the cause and nature of RSDS;

(2) the risk factors that contribute to the manifestation of RSDS;

(3) available treatment options, including risks and benefits of those options;

(4) environmental safety and injury prevention;

(5) rest and use of appropriate body mechanics;

(6) the availability of RSDS diagnostic, treatment and outreach services in the community; and

(7) any other factors or elements that might mitigate the effects of RSDS;

b. notify local health departments, hospitals, clinics and other health care providers about the availability of information concerning RSDS on the department's website;

c. within the limits of funds available to the department for this purpose, coordinate, promote and offer professional education programs, through institutions of higher education, for health care providers and health-related community-based organizations, which may include, but are not limited to the following elements:

(1) research findings;

(2) the cause and nature of RSDS;

(3) the risk factors, including, but not limited to, lifestyle, heredity and drug interactions;

(4) the diagnostic procedures and appropriate indications for their use;

(5) medical and surgical treatment options, including experimental and established drug therapies and the risks and benefits of each option;

(6) environmental safety and injury prevention; and

(7) the availability of RSDS diagnosis and treatment and support services in the community; and

d. promote research, through both private and public funding sources, to accurately identify, diagnose and treat RSDS.

6. The commissioner may accept and expend any grants, awards or other funds or appropriations as may be made available for the purposes of this act.

7. This act shall take effect on the 180th day after enactment.

STATEMENT

This bill establishes a reflex sympathetic dystrophy syndrome (RSDS) education and research program in the Department of Health and Senior Services. The purpose of the program is to promote public awareness of the causes of RSDS, the value of early detection and the diagnosis of and possible treatments for the syndrome, and to promote research, through public and private sources, to accurately identify, diagnose and treat the syndrome.

Under the provisions of the bill, the department would:

· establish a public education program, through the department's website, to promote RSDS education, which will enable individuals to make informed decisions about their health, including, but not limited to the following elements: the cause and nature of RSDS; the risk factors that contribute to the manifestation of RSDS; available treatment options, including risks and benefits of those options; environmental safety and injury prevention; rest and use of appropriate body mechanics; the availability of RSDS diagnostic, treatment and outreach services in the community; and any other factors or elements that might mitigate the effects of RSDS.

· notify local health departments, hospitals, clinics and other health care providers about the availability of information concerning RSDS on the department's website;

· within the limits of funds available to the department for this purpose, coordinate, promote and offer professional education programs, through institutions of higher education, for health care providers and health-related community-based organizations, which may include, but are not limited to the following elements: research findings; the cause and nature of RSDS; the risk factors, including, but not limited to, lifestyle, heredity and drug interactions; the diagnostic procedures and appropriate indications for their use; medical and surgical treatment options, including experimental and established drug therapies and the risks and benefits of each option; environmental safety and injury
prevention; and the availability of RSDS diagnosis and treatment and support services in the community; and 

. promote research, through both private and public funding sources, to accurately identify, diagnose and treat RSDS.Lastly, the bill provides that the Commissioner of Health and Senior Services may accept and expend any grants, awards or other funds or appropriations as may be made available for the bill's purposes.

As provided by the Reflex Sympathetic Dystrophy Syndrome Association.

Love & light

Mel xx

I think I do count them frequently on my blog, but today is not one of those days. I'm down with a flare again. I'm in pain which the pain killers dull but do not eradicate. Had to cancel plans  with my sister, my son, and my daughter. I was really looking forward to them. I realize I did just count three blessings, but you know what I mean. Please don't anyone point my blessings out to me by way of comment because I will have to ban you from my blog. I mean, what would

Copyright Jupiter Images 2008

 I do with all this anger????? And if anyone asks me what advice do you give your clients, they are also banned from my blog. Is anyone out there having as bad a day as I am? 

I can't believe you read this far. 

Well, Tuesday officially marked the four month anniversary of this blog. If you want to buy me something nice to celebrate, I accept all major credit cards, good red wines (bonus points for sparkling wines), and deep tissue massages. All jokes aside, I'm glad to be writing this and want to thank those of you who read this blog.

This week has been hectic. I wanted to have written Tuesday, but I have been so busy. To make a long story short, I now have four children ages 5 through 14 living in my house, my partner's nieces and nephews. I got a call on Wednesday saying that we (my partner and I) were going to go pick up the kids because their mother was about to be evicted from her apartment and she couldn't afford to feed the kids anymore--my partner and I had bought groceries and brought them over several times in the preceding weeks.

My head was spinning as I got off the phone, wondering where we were going to put all these kids. We had one "bed" in the house--ours, a mattress on the floor, and that certainly wasn't going to hold six people. My mind was reeling when I got home, so I went on a search for bedding. By some miracle, we found enough. I found a mattress and box springs in my attic for one, my father brought over another, an extra from his house, we found a toddler size racecar bed in the garage, and an inflatable mattress to suffice until another actual bed can be brought over. We found three sets of sheets (we had to buy a set for the racecar bed), four comforters (including two that I had made myself!) and four pillows.

Setting it all up proved to be difficult though. Stairs, as you probably know if you read this blog, are my arch nemesis. I climbed the flight in our house way more than I wanted to that day, trying to get everything set up and ready. The room looks really cute though... my Ultram and I are just going to be BFF for a couple days while I recover from too much strain.

Thanks for your patience with me while I try to get settled into all of this. I appreciate your continued reading. By the way, I added a cool little widget so that if you don't use an RSS reader that you can be e-mailed when I update this blog. It's up at the top, sort of on the right side, so be sure to fill in your e-mail so you can know when I write a new blog. Otherwise, add me to your RSS reader and I promise I'll start writing interesting things again soon. TGIF!

Yesterday I had the pleasure of speaking with David Wise, PhD, author of A Headache in the Pelvis. I read A Headache in the Pelvis at a very important juncture in my experience with IC and vulvodynia. I had just started treatment with a vulvovaginal specialist and was not feeling any pain relief. My anxiety was through the roof and I felt panic nearly all the time. I was at my wit's end and extremely terrified.

I started reading the book one afternoon and put aside everything else immediately. I read the whole book in one sitting and heard the faint but distinct voice of my Inner Healer. The book spoke to a deeper part of me than my logical mind or my emotionally stressed heart. I took in everything Wise wrote and absorbed it thoroughly. I was interested in the physical therapy techniques for dealing with pelvic floor dysfunction. However, it was the other message in the book that drew my Inner Healer to it with a magnetic force.

To me, the core message of A Headache in the Pelvis is about relaxing both the body and the mind through relaxation techniques, breathing techniques, and cognitive therapy or learning to truly understand how thinking shapes our emotional lives. (This goes far beyond "just relax and you'll feel better," by the way. This is relaxation in a way most of us don't truly utilize or even understand. It is powerful and extremely healing.) I knew without a doubt I needed to learn and apply everything about these mental techniques. I studied the book itself and then worked my way through the recommended reading, making trips to the library and bookstores regularly. I knew I was onto something right for me - my Inner Healer was dead certain.

I told this to Dr. Wise yesterday and the ensuing conversation included an important point that I felt was necessary to share with you, no matter where you are in your journey to health. As we talked about the mental/emotional concepts addressed in A Headache in the Pelvis, Wise told me many of the people who come to his clinic or read the book do not take those ideas to heart. He was excited to learn of the healing effect they had on me, and correlated the healing process for pelvic pain to the process of losing weight. Many people want the quick fix, the magic pill, or the instantaneous result. Lasting weight loss takes time and lifestyle changes. The body cannot be rushed. Likewise, healing must include digging to the root of the problem to eliminate it forever.

This has absolutely been my experience. Had I simply done physical therapy, I know I would not have healed. Five seconds after I left the physical therapists' office, I was taking my freshly relaxed muscles straight back to square one with each passing minute. The constant process of storing stress and emotion in my pelvic muscles was just that - constant. To undue the tension during an appointment was just a miniscule moment in time compared to the ongoing tension that wasn't being undone in those muscles. It wasn't enough.

My Inner Healer was extremely wise, as usual. She knew I needed to undo the process of storing tension in those muscles and really learn new ways to approach every aspect of my life. Only then would I be getting to the root of the problem. I am always so impressed with my Inner Healer when I look back and see her genius in retrospect. She took me through the somewhat long (roughly six months) and not entirely easy process of changing myself, and how I deal with life on the very deepest level. I won't say it was a simple or quick process. However, the payoff was far greater than I could ever have imagined. Not only did I heal completely but my entire life changed for the better. My depression lifted, my creativity skyrocketed, and I became a version of myself I had only dreamed of previously.

The quick fix may have the allure of instant gratification, but the deep fix has the allure of complete health. I am grateful to Dr. Wise and his incredibly valuable, enlightening, and calming writing for starting me on the journey to this place of absolute, whole, mind-body health.

well, i am finally able to get back to the blog and start writing. My crohn's has come back after a 12-year hiatus. I am on every conceivable medication for crohn's: 6-mp, prednizone, cipro, etc. etc. and i am no longer allowed to eat high fiber diets, so goodbye Grape Nuts®, and whole wheat bread. at least i have vicodin to keep me feeling good. gawd, i love that stuff. i am on the 750 version, none of that 500 or less for me.