Session on CRPS at CPS 2018, part 1 (04.06.2018)
The 2018 annual scientific meeting of the Canadian Pain Society (CPS) took place on May 23, 24 & 25th. For short, it was called “CPS 2018” or #CanadianPain18 on Twitter and Instagram. I was there as a “Patient Partner”, as someone with a rare disease; Complex Regional Pain Syndrome (CRPS).
When I received the advance copy of the conference agenda, I hadn’t expected to see anything specifically about CRPS – because it’s a rare disease. I was in for a surprise; this conference had a full session on my disease!
A ‘session’ at this meeting was a set of 3 different presentations, all on a specific topic. Each full session lasted 1.5 hours. There were also 2 posters on CRPS – each one describing a different research project. You can read about both of these posters on CRPS at CPS = Posters. But for now I want to tell you about the session on CRPS.
The overall title of the session was “Mechanism-informed management for Complex Regional Pain Syndrome“. There were 3 health professional giving presentations during this session; an occupational therapist, a physician, and a physiotherapist. The titles of their 3 – very different – talks were:
- Mechanisms and Management [of CRPS]
- Evidence-based rehabilitation strategies for CRPS
- Measuring Up: CRPS mechanisms and measures
The first presentation was by a doctor at a local (Montréal-area) hospital; Dr. François Gobeil gave an overview of “Mechanisms and Management”(1). This sounds really complicated, but the goal was simply to give an overview of what’s currently known about CRPS – from a medical perspective.
Dr. Gobeil confirmed something I’d already found out, from my own searches for CRPS in medical journals. That the type of fracture (broken bone) most likely to end up with this disease is called a distal radius fracture. That’s a fracture of the radius (the larger bone in the lower arm), at its distal end – the end near the wrist. What most people – who don’t work in healthcare – would call a broken wrist.
There are a few different types of distal radius fractures, including one called a Colles’ fracture (named after the doctor who first noticed, or wrote about, it). This photo is of my own Colles’ fracture, the one that triggered my CRPS. The 2 ends of the snapped bone are sticking out; one at the top of the wrist, and the other at the bottom. I was ‘lucky’ that neither end pierced the skin.
What I found really interesting, though, was this next slide. It shows the types of fractures most people had before being diagnosed with CRPS. First off, having any of these fractures doesn’t mean you’ll get this disease! The list is meant for doctors, as a reminder that they should consider CRPS if there are certain symptoms or signs, particularly when the bone should be healing & feeling better.
What did I find so interesting about this list? The first 3 types of fractures listed. The first is distal radius fractures, with an incidence rate of between 1% and 32%. An incidence rate tells you – more or less – how likely something is to happen. So for any 100 people with distal radius fractures, anywhere from 1% to 32% of them might get CRPS; or 1 to 32 people out of that 100 with these fractures. The percentages don’t add up to 100%, because then everyone with these fractures would have CRPS!
Next is Colles’ fracture, with an incidence rate of between 28% and 36%. But Colles’ fractures are a type of distal radius fracture. And the 3rd type of fracture listed is… broken wrist. That can also be a distal radius fracture.
And this highlights one of the major problems when trying to look scientifically at CRPS. Even the fractures aren’t consistently classified the same way! And CRPS is still often called Reflex Sympathetic Dystrophy (RSD), its old name; this leads to a lot of confusion when trying to look at past research, to calculate statistics.
So there’s still a lot of uncertainty about CRPS. I checked with another one of the presenters, after this session, about the 3 types of fractures being listed separately on this slide. What this shows is that, no matter what you call a ‘broken wrist’, the incidence rates for CRPS are from 1% to the 30% range.
Dr. Gobeil also said that a person would usually only end up with CRPS if they had both a trauma (e.g. a fracture or surgery) and a risk factor or predisposition to the disease. But no one knows yet what that predisposition could be. All we seem to have for CRPS is… unanswered questions!
He described differences in how healthcare professionals see the timeline, or development, of CRPS. To read the following slide from Dr. Gobeil, look at the letter (A, B, or C) under the box for each of the areas listed below. Then look at the letters above the images – match them up, and count them. So the code AAABC gives more weight – more importance – to the peripheral nerves than does ABBCCC:
- A. Peripheral nerves = 3
- B. Spinal cord = 1
- C. Somatosensory cortex = 1
- A. Peripheral nerves = 1
- B. Spinal cord = 2
- C. Somatosensory cortex = 3
Dr. Gobeil also noted that there are 3 distinct types of changes seen with CRPS, (and I’ve had all of them!):
- Sensory changes
- Allodynia (when the skin is painful to the touch, sometimes even to breeze on the surface of the skin)
- Hyperalgesia (an increased sensitivity to painful stimuli; things that would normally be slightly painful become much more painful than what we’d expect)
- Vasomotor changes
- Skin colour changes
- Changes of temperature ==> *Dr. Gobeil warned that using a skin thermometer to measure these temperature isn’t accurate, because the temperature changes are so localized; he recommends infrared
- Sudomotor changes
- Changes in sweating
- Edema (swelling)
Next he presented summaries of a couple of research studies. This slide is about a study from 2014, showing:
- Peripheral and central (nerve) mechanisms
- Signs & symptoms
- Mechanism-based treatments (suggestions)
Here’s a link to this study:
Mechanism-based treatment in complex regional pain syndromes. Mechanism-based treatment in complex regional pain syndromes. Janne Gierthmühlen, Andreas Binder, Ralf Baron. Nature Reviews Neurology. Volume 10, pages 518–528 (2014). 19 Aug 2014.
Dr. Gobeil gave a case study. The items in red are risk factors; parts of the patient’s medical history that suggest she may have CRPS. In green are treatments that are usually recommended. And in blue are treatments he considers controversial.
This slide from Dr. Gobeil is from a study on reducing the risk of CRPS following Colles’ (distal radius) fracture. In retrospect, I can relate to all of these points, as a CRPS patient. This is the study he discussed:
Can we reduce the incidence of complex regional pain syndrome type I in distal radius fractures? The Liverpool experience. Sharon Gillespie, Fiona Cowell, Graham Cheung, and Daniel Brown. Hand Therapy. Vol 21, Issue 4, pp. 123 – 130. 12 Jul 2016.
Dr. Gobeil suggested that sympathetic blocks (like my stellate ganglion blocks & Bier (IV) blocks) are on the way out for CRPS treatment. But my patient view, and most of what I’ve heard from other patients, is that these blocks – and also axillary brachial plexus blocks – provide more relief than medications…
He also noted that kinesiophobia (a fear of movement) can seem to be common with CRPS, but that it’s really a fear of triggering the neuropathic pain. Which is a reasonable response to this type of – neuropathic – pain.
And Dr. Gobeil told the audience that most of the time, patients with CRPS deal with an attitude from doctors & others of “discharge, rehab, and good luck!” Because there isn’t much else to offer them than “good luck”.
And on that note…
The best – and saddest – slide of his presentation, in my view as a patient, was this one. It was Dr. Gobeil’s summary of what’s currently known about CRPS.
Not much. It’s rare. No effective treatments. No cure.
(1) Francois Gobeil, MD, FRCP. Mechanisms and Management, presented during Session 107 of the 39th Annual Scientific Meeting of the Canadian Pain Society (CPS). 25 May 2018, Montréal, Canada.