CRPS: What To Do About It? A Guest Post from Janet Holly

I am very privileged to have another guest post from a Physiotherapist that has just as much of an obsessive interest in Complex Regional Pain Syndrome as I do. Janet Holly (@innerchild) is a Senior Physiotherapist at Ottawa Hospital in Canada. Janet recently had a paper (ref) published with Tara Packham (@TaraLPackham) in the Journal of Hand Therapy entitled: 

Mechanism-specific rehabilitation management of complex regional pain syndrome: Proposed recommendations from evidence synthesis. 

I recently reached out to Janet to ask her for her experiences of working with people living with CRPS and to write a short summary of her paper she co-authored with Tara. So without further ado I will hand you over to Janet!

As a new grad many moons ago, there were a few diagnoses that could inspire internal terror in this newly minted clinician. CRPS or Reflex Sympathetic Dystrophy as it was known then, was one of them. In the early days of my career, treatment of CRPS seemed akin to torturing your patient. Yes, we did it in the best interest of our patient, but I always felt that the prescribed treatments did not address the human being who had CRPS. The treatments were targeting the traditional physiotherapy impairments of range of motion strength, gait, weightbearing etcetera and appeared to create intense suffering in some patients. If patient drop out rate was an indicator – it did. This was not what I signed up for in becoming a physiotherapist.

Nowadays, my practice involves a high percentage of CRPS patients and rather then wanting to run, I find the condition one that excites the critical thinking areas of my brain. Although much has been researched both on the neurophysiology, immunology and possible treatments of CRPS, there is much to learn yet. As it is a condition with a low prevalence rate it is difficult to conduct high powered studies to inform our practice (deMos et al., 2007).

In a discussion with Tara Packham, OT, in the fall of 2017, we determined that although the scientific literature had tailored pharmacological treatments based on the presenting mechanistic neurophysiology and immunology of the patient conservative treatments had yet to be truly structured around mechanism.  The prevailing evidence-based rehabilitation treatment regimes were like throwing spaghetti at a wall to see what stuck.

As a result, we set out to do a systematic review of the rehabilitation literature in a mechanistic methodology. Using the work of Gierthmuhlen et al., (2014) as inspiration, eight different mechanisms were mapped out. These mechanisms were: targeting peripheral mechanism (inflammation, oxidative stress/hypoxia, allodynia/hyperalgesia) and targeting central mechanisms (body perception disturbance, learned non-use/pseudoneglect, neuroplasticity, kinesiophobia, psychological distress).

A systematic search of the literature was done which revealed 126 articles which reduced to 74 papers after abstract review. In the end, 49 papers were eligible for our review. (Packham & Holly, 2018) The final results revealed conservative management strategies linked to each of the eight mechanisms proposed by Gierthmuhlen (Gierthmuhlen, Binder, & Baron, 2014).

Evidence for the clear majority of treatments was poor with ratings ranging from 0 to 8/10 on the PEDro evidence scale. Even studies that obtained a high PEDro rating were found to have significant flaws when appropriately critically appraised. The length of this blog does not allow a detailed sharing of each treatment, but the diagram below summarizes the treatments found within the mechanism they address. The level of evidence for each treatment is colour coded.  However, one treatment may address two different mechanisms.  We stress that treating clinicians should not be solely focussed on impairments to drive their treatment strategies but rather take a dual top down approach of managing participation dysfunction and quality of life all the while addressing corresponding signs and symptoms that are unique to the individual patient’s CRPS experience from a bottom up methodology. This is in line with the World Health Association’s International Classification of Functioning, Disability and Health which emphasizes the need to restore participation in health interventions (World Health Organization, 2002).

Interventions such as splints or modified activities can be seen by some clinicians as enabling disability; however, clinicians should critically reflect on each individual case. The splint or modified activity may be allowing for greater participation in other life activities by avoiding a “flare” which last longer then an hour. In this case the splint could be allowing the continuation of important life roles such as engaging in a recreational activity with their children after school.

Key:

  • High quality evidence
  • Moderate quality evidence
  • Preliminary evidence
  • Expert opinion

 

Clinical practice guidelines in this population rely heavily on expert opinion. They emphasize a need for participation and activity-based therapy with constant grading to promote change. However, the literature which looked at occupational therapy treatments stressed (Lageux et al  2018, Rome et al 2016) the need to individualize the treatments for each patient. Their needs to be an emphasis of being mindful that some patients will push and exceed their activity baselines. This constant exceeding of baselines can lead to worsening of signs and symptoms with the result being significantly disrupted sleep secondary to pain. (page 4 of our review). In this population continuing to push a patient when pain is increasing and sleep is continuing to deteriorate can be risky. The literature informs us that the rate of suicidal ideation can be as great as 74% (Lee, et al., 2014) and continued sleep deprivation is associated with anxiety and depression (Finan et al., 2013; Schaefer et al., 2014).

Our review found a need for clinicians to start reflecting on their practice of relying on old treatments that are versed in expert opinion solely and considering some of the principles of pain neurophysiology. For example, rather then using contrast baths, perhaps the clinician should be introducing thermal sensory inputs in a graded progression of slowly decreasing the water temperature rather then immersion in very cold water. The same approach can be used with mechanical loading of a limb versus jumping into full loading. Treatments should be congruent with what we know about pain neurophysiology.

Our review found that evidence-based treatments that address vasomotor instability from stress hormones, sympathoafferent coupling, dystonia and focal osteopenia were still lacking. Research in these areas should be targeted. Emerging technologies may also bring promise of potential future treatments as our database searches uncovered some case reports using virtual reality. There is much to continue to explore and research in determining evidence-based treatments for CRPS as we learn more about its pathophysiological mechanisms.

This blog explored the literature specific to CRPS. However, we have learned much in the treatment of other pain conditions that informs us that our treatment strategies should not end there.  The work of rehabilitation professionals like Maxi Miciak, Folarin Babatunde and Paulo Ferreira informs us that establishing excellent patient specific therapeutic relationships is as important as the specific techniques we use.  Rather then go into the specifics of their research, a light-hearted word search has been constructed that includes key features of therapeutic relationships and focussed patient goal setting.

ADVOCACY                                          AVOCATION

CHEERLEAD                                      CREATIVITY

EMPATHY                                           GENTLENESS

JOY                                                        KINDNESS

LIFE                                                      MOBILITY

PACE                                                    PARTICIPATION

PARTNERSHIP                                 PATIENCE

PEACE                                                 QOL

ROLES                                                 SAFETY

SLEEP                                                 TRUST

UNDERSTANDING                         VALIDATION

Thanks so much to Janet for her insights and synopsis of her research with Tara. CRPS is a debilitating condition and a challenging condition to manage, there is still much to learn. Advances are being made and at a steady pace that can only be encouraging for future treatments. Check out some of the other CRPS blogs under the Burning Nights and CRPS tab.

Thanks again for having a read

TNP

 

 

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6 thoughts on “CRPS: What To Do About It? A Guest Post from Janet Holly

  1. Thanks for this!
    I was diagnosed 20 years ago with RSD rt. arm after I tore my rhomboid muscle. No problems since. I didn’t even know RSD was a disease, the doctor fixed my arm so I figured he fixed the RSD. Well, a year ago I strained my rt. lumbar area and it looked like CRPS rt. leg. Well, after 7 healthcare systems failed to identify the issue I went to an RSD specialist out of State. Sympathetic Skin Response testing was done which showed a sympathetic issue going on around L2-3. So I got an epidural injection at that level of steroid only and 5 days later I woke up with the weather sensitive fire in my leg having been put out. That was March 1st and the pain has so far not returned. We’re hoping that it was just a ticklish sympathetic nerve caught up in some residual inflammation in that area and not truly a spread of that disease. Time will tell. I’m sharing this to emphasize the need for proper diagnostic testing to rule out other things. The doctor also did EMG/NCS which were normal for my lower body.
    From a patient’s perspective I would add:
    A warm therapy pool for PT is equivalent to heaven.
    Nifedipine and Lidocaine patches totally rock.
    A high mannitol diet helps get rid of edema and foggy headedness. Getting rid of edema helps get rid of pain. Without proper nutrition and the necessary life style changes, when applicable, it kinda doesn’t matter what you do to help the person.
    RSD patients who push through their limits are at the end of their rope and should be monitored for suicidality. Pushing through one’s limits gives one a temporary high. It is an act of the desperate soul.
    The soul is expressed through the body, mind, spirit, and relationships of the person. To treat the person holistically all 4 expressions have to be assessed and supported.
    Prayer and spiritual meditation should be emphasized. When I am in the presence of God I don’t feel pain. No one does.

    Liked by 1 person

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