Sunday, September 22, 2013

"Above all else, stay in life."

These were my feet, or as I call them "the things at the end of my legs," back
in 2011, which partially explains my reticence to update their current loveliness.  This is just to give
those who are unfamiliar with advanced CRPS an idea of what it can look like.  What it
feels like is in the realm of "difficult to describe without obscenities."  I have it in both arms and legs and
in the lower portion of my face.

If you sometimes feel the not-so-subtle pull of bias as you research articles and studies about CRPS, you may appreciate the work of the Cochrane Collaboration:

The Cochrane Collaboration is named after Archie Cochrane (1909-1988), a British epidemiologist, who advocated the use of randomised controlled trials as a means of reliably informing healthcare practice. We are an independent, not-for-profit organisation, funded by a variety of sources including governments, universities, hospital trusts, charities and personal donations.
In essence, they've assembled teams of researchers, possibly more diverse than most such teams, but no less qualified, that are guided by "what works." They review scholarly publications with effectiveness in mind, based on the evidence before them.

It is the kind of plain speaking that comes from thorough analysis, and that many of us need, especially when we are being offered and counseled all sorts of doom and gloom or wild therapies.  Sadly, some of these well-intentioned offers and counsels are motivated by an underlying greed.  Or so I hear...

So visit Cochrane Reviews --

Cochrane Reviews are systematic reviews of primary research in human health care and health policy, and are internationally recognised as the highest standard in evidence-based health care. They investigate the effects of interventions for prevention, treatment and rehabilitation. They also assess the accuracy of a diagnostic test for a given condition in a specific patient group and setting. They are published online in The Cochrane Library. 
Each systematic review addresses a clearly formulated question; for example: Can antibiotics help in alleviating the symptoms of a sore throat? All the existing primary research on a topic that meets certain criteria is searched for and collated, and then assessed using stringent guidelines, to establish whether or not there is conclusive evidence about a specific treatment. The reviews are updated regularly, ensuring that treatment decisions can be based on the most up-to-date and reliable evidence.
For everyone who already knows that regional or sympathetic blocks are largely ineffective and are still used mainly as a money-maker, this kind of evidence-based review can ease your mind.  And it is something you can cite when the procedure-oriented pain management clinics schedule your 200th block without any evidence of success the first 199 tries!

On the other hand, it is gloomy news, but not unexpected.  There is no magic bullet, no cure, no one therapy that has had overwhelming success, or even what most people would consider any success at all.  We patients with CRPS tend to look at one person who responds well out of a cohort of thirty as phenomenally good news!  There is much that is, as they say, "in the pipeline," but until those treatments come rolling out the medical assembly line and into the arsenal of our own local physicians, we are stuck with the "throw everything at it" approach.  

This is a frustrating way to deal with a horrific disease that not only debilitates the body, but the mind and one's social body, as well.  It empties our pockets and it empties our date books of most everything except medical appointments.  Even my dear Fred says, from time to time, that he cannot stand seeing and hearing about so much pain day in, day out.  (That's where we get our strangely grim smiling faces and gravely laughter from! The effort of suppressing the expression of what we have to feel is also debilitating.)

So take your cues from the "best evidence," rely on "what works" for you, and be vigilant about following research.

I don't mention it often, but think of it daily:  Back in the beginning years of coming to terms with this disorder, about which my doctors only offered confusion and pessimism (two of them cried), I kept running into the name of Drexel University Chair of Neurology, Dr. Schwartzman.  This was years before he offered me an "expedited appointment," which turned out to actually mean "over two years" away.  This was in the days of "What the heck is happening to me?  When will this pain stop?  Where are my legs!? What's wrong with my hands?"  I emailed him in the middle of the night, as the middle of the night is when most CRPSers are up.  In later years, he and his staff would send his research papers, making me break out dictionaries and strain my brain to understand.  Back then, however?  He gave me some summary information, was very kind, but the greatest thing he gave me was this gift of advice --

 "Above all else, stay in life."
-- Dr. Robert Schwartzman
(recently retired, just discovered! a well-deserved rest to him!)

It took me years to peel the layers of that onion... and I am peeling, still.  My appointment will never happen, and would be pointless now, but that bit of wisdom can be salvation in a rough moment.  Use it yourself, if you need it.  I don't think he'd mind...

I return you now to the Cochrane Review!

Which treatments are effective for the treatment of complex regional pain syndrome in adults?

O'Connell NE, Wand BM, McAuley J, Marston L, Moseley GL
Published Online: April 30, 2013


There is currently no strong consensus regarding the optimal management of complex regional pain syndrome although a multitude of interventions have been described and are commonly used.

To summarise the evidence from Cochrane and non-Cochrane systematic reviews of the effectiveness of any therapeutic intervention used to reduce pain, disability or both in adults with complex regional pain syndrome (CRPS).

Main results
We included six Cochrane reviews and 13 non-Cochrane systematic reviews. Cochrane reviews demonstrated better methodological quality than non-Cochrane reviews. Trials were typically small and the quality variable.

There is moderate quality evidence that intravenous regional blockade with guanethidine is not effective in CRPS and that the procedure appears to be associated with the risk of significant adverse events.

There is low quality evidence that bisphosphonates, calcitonin or a daily course of intravenous ketamine may be effective for pain when compared with placebo; graded motor imagery may be effective for pain and function when compared with usual care; and that mirror therapy may be effective for pain in post-stroke CRPS compared with a 'covered mirror' control. This evidence should be interpreted with caution. There is low quality evidence that local anaesthetic sympathetic blockade is not effective. Low quality evidence suggests that physiotherapy or occupational therapy are associated with small positive effects that are unlikely to be clinically important at one year follow up when compared with a social work passive attention control.

For a wide range of other interventions, there is either no evidence or very low quality evidence available from which no conclusions should be drawn.

Authors' conclusions: 
There is a critical lack of high quality evidence for the effectiveness of most therapies for CRPS. Until further larger trials are undertaken, formulating an evidence-based approach to managing CRPS will remain difficult.

This record should be cited as: O'Connell NE, Wand BM, McAuley J, Marston L, Moseley GL. Interventions for treating pain and disability in adults with complex regional pain syndrome. Cochrane Database of Systematic Reviews 2013, Issue 4. Art. No.: CD009416. DOI: 10.1002/14651858.CD009416.pub2

Assessed as up to date: March 1, 2013
- Click here to SEE MORE


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  3. hi vaffan,

    welcome to my nutty blog -- the one i believe you were once accused of actually authoring, since two people thinking CALMARE/CTTC is a scam must clearly be one masquerading as two!

    i read the posts you recommended and yes, clearly, there are some stylistic (cough) differences between what this lady purportedly said in praise of CALMARE and her actual writing and comprehension levels. as in, she didn't write that smarmy, perfectly spelled, repetitive, manipulative crapola in praise of the fancy TENS unit.

    oh! i just peeked at CTTC's performance for the day (thus far) -- it is peaking at TEN! TEN -- so i cannot imagine how anyone is still defending either the "product" or the company. marineo is laughing all the way to the bank.

    i have always wanted to congratulate you on a fine job speaking "truth to... power [?]... or, at least, corporate mucky-muckiness"! i don't know your motivation, but as your aims coincided with mine, i'm not surprised the investorshub crowd thought we were in cahoots.

    i truly hate myself for saying this, but i have to wonder if some of these testimonial givers even have CRPS -- perhaps they were misdiagnosed, perhaps there are some comorbid conditions in play, i dunno. this lady, if what she says is true, certainly went the whole route of usual treatment -- from SCS to ketamine. but to me, that would imply learning a great deal about the disease along the way... and she doesn't seem to demonstrate that understanding (i'm thinking of the SCS causing damage to her daughter in utero -- a very strange claim).

    it's funny, i would have at least lent a more sympathetic (ha ha) ear had ANY of these folks shown pictures or videos of their "afflicted" parts, or of their daily challenges. you will note my lovely gams at the top of this post! the good CALMARE doctor chided me for not understanding that to do so was "embarrassing."

    "embarrassing"? not if you are willing to give a testimonial (designed to make viewers weep), not if you have ANY interest in advancing understanding of a misunderstood disorder!

    sorry, vaffan! when only the choir shows up, only the choir hears the preaching!

    keep up the great work. surely one day soon, CTTC will be pulled from trading. i wonder whose patents they are appropriating now - for a quick gain, then a slow circling of the drain.

    be well! drop by anytime, though not much is going on these days...



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