Session on CRPS at CPS 2018, part 2 (09.06.2018)
This is my second post about the session on Complex Regional Pain Syndrome (CRPS) at the 2018 annual scientific meeting of the Canadian Pain Society (CPS); #CanadianPain18 on Twitter and Instagram. The meeting was held from May 23rd to 25th, here in Montréal, and I was very happy to be able to attend as a “Patient Partner”.
A ‘session’ at #CanadianPain18 means a set of 3 different presentations, for a total of 1.5 hours, on 3 different topics for the same disease or condition. You can read about the 1st part of this session at CRPS session at #CanadianPain18 – Part 1. And there were 2 posters on CRPS, describing 2 different research projects; CRPS at CPS = Posters.
The overall title of the CRPS session was “Mechanism-informed management for Complex Regional Pain Syndrome“. There were 3 health professional giving presentations during this session; a physician, a physiotherapist, and an occupational therapist.
This post is about the second presentation on CRPS, given by a physiotherapist, or physical therapist. Her name is Janet Holly, and she’s the senior physiotherapist at The Ottawa Hospital’s Rehabilitation Centre. The title of her presentation was “Evidence-based rehabilitation strategies for CRPS”(1). Her talk was about how to plan, or design, treatment(s) for patients with CRPS.
I was disappointed that I could only take a photo of 1 of her slides, because the person sitting in front of my kept shifting in her seat and blocking my view. But I made sure to the slides with the references I thought were the most important!
There’s actually quite a lot of information on this slide; it’s like many slides in one! it has a list on the left side, and a circular image on the right. The list shows 3 things to be considered in treatment plans for patients with CRPS:
- The treatment plan has to be tailored to the specific patient. As I’ve written elsewhere in this blog, each patient with CRPS can ‘present differently’ – that is, have different combinations of CRPS symptoms – that react differently to treatments
- If a patient with CRPS is having problems sleeping, that should be part of the treatment plan
- The same goes for depression; if a patient with CRPS is depressed, that shouldn’t be ignored in their treatment plan for CRPS
What struck me most in this part of the presentation was the last bullet point, so let’s look at that one first, and then go back to the beginning. Bear with me – it’ll all make sense in the end ‘-)
The last point on this slide shows that the level of suicidal ideation (actually considering – or thinking about – suicide) is as high as 74% of CRPS patients (2). That means only 26%, or a quarter, of people with CRPS don’t think about suicide. To say it another way, an average of 74 out of 100 people with CRPS are considering suicide. To be clear – this is not the rate of people who take their lives! It’s only the number of people who think about it.
If you’re reading this and are thinking about taking your life, or you know someone who is, PLEASE call a helpline!!! Here are some places you can call, for yourself or others:
Canada Suicide Prevention Service (CSPS) for crisis support, by phone, text or chat – in English or French:
– Phone: toll-free 1-833-456-4566
– Text: 45645
– Chat: crisisservicescanada.ca
And there are specific phone lines for:
~ People under 20; KidsHelpPhone = 1-800-668-6868
~ First Nations & Inuit; Hope for Wellness 24/7 Help Line = 1-855-242-3310
~ Canadian Indian Residential Schools Crisis Line = 1-866-925-4419
~ Trans LifeLine = 1-877-330-6366
And this Canadian website has links to local helplines: Canadian Association for Suicide Prevention.
This wiki (website) has a list of suicide hotlines, including some specialized service (e.g. for veterans):
This statistic, or number, is from a research study done in Korea, released in 2013. Although there were only 39 patients in this study, that’s a decent number for a rare disease. But, and it’s a big BUT… They’re using a group of 39 patients to extrapolate – to make an educated guess – that the rate in this group of 39 people would be the same for all people with CRPS.
The researchers noted that “Previous studies have shown a relationship between CRPS and the risk of suicide”(2). So the aim of the Korean study was to try to pinpoint what could make people with CRPS more likely to consider suicide.
They found 3 things that could make this more likely:
- Serious depression
- High levels of pain
- Strong negative impact of CRPS on their daily life; including their activities, social life, and work
One surprise in this study was that neither anxiety nor sleep difficulties made any difference. I’d have guessed that trouble sleeping would have been a really important factor. Which just goes to show how important research can be! Sometimes the results are surprising – even to the researchers.
So now let’s look at the first bullet point in the list, on the same slide. You may have noticed that some other research studies are mentioned (in brackets). If you haven’t seen the words “et al” after a name before, all that means is that there was more than 1 researcher involved in the study. It’s a shortened, or abbreviated, Latin phrase that means “and others”. That means the report or article in the medical/scientific journal was written by more than 1 person or author. Often only the first author is listed, and then ‘et al’, to save room on a slide or list.
We just talked about the last study (last bullet point), by ‘Lee et al’, so now I’ll tell you a bit about the others – from the top. What each of these studies shows is that people doing research on CRPS tend to find the same thing – so far. That the things that are expected to work for CRPS often don’t.
The ‘Lagueux et al’ (3) study was on 2 treatments that have been used for CRPS:
- Graded Motor Imagery (GMI)
- Transcranial Direct Current Stimulation (tDCS)
These researchers wanted to find out if adding the 2nd treatment to the 1st one would make any difference. Their study, of 22 patients, showed “no statistically significant reduction in pain”(3). So the answer was no; it didn’t work any better when tDCS was added to GMI.
The research by Dr. Rome (4) had a similar plan, of adding something to another treatment. This study, in France, was to find out if giving patients physiotherapy (PT) with added occupational therapy (OT) could help them more than PT alone. The patients all had CRPS affecting their hands, so Dr. Rome’s study looked at certain ‘daily life’ activities using hands. Getting dressed, personal care (brushing hair and teeth, looking after oneself), and preparing meals. The results were published in 2016, and this time there was some good news.
But this was a retrospective study; that means that the patients were only given questionnaires to fill in after they’d finished their treatments. My background’s in medical (or clinical) research ethics, and I’ve been taught that it’s usually better to have patients complete these types of questionnaires before, during, and after their treatments. Not only after treatment ends. If patients only answer the questions afterwards, some of them may not remember how bad their pain was before treatment; they may recall it being better, or worse, than if they’d answered the questionnaire at that time. That’s called recall bias.
Another common bias in research – and in regular life! – is called the primacy effect (or bias). That’s when you have clearer, stronger, memories of things that happened first; like your first impression of a person, your 1st day at a new school or job, your first date. This can also happen for the first symptoms of a disease, or the 1st day of a new treatment. And I’m sure you can figure out what recency bias is! That happens when the memories are stronger or clearer for things that happened more… recently.
60 CRPS patients filled in the questionnaires for Dr. Rome; 30 of them had been treated with OT in addition to physiotherapy, and the other 30 had PT without OT. This is what he found:
“The patients who received PT+OT had on average 10% better dressing and undressing function, 25% better for meal preparation, and 20% better on personal care than those who underwent PT only. In CRPS, OT combined with PT brings a real benefit in restoring the essential activities of daily life. This strategy could be implemented as soon the diagnosis confirmed and continued for a very long time.”(4)
The last part of that quote is: “and continued for a very long time”. CRPS isn’t a disease with any quick fixes. It’s a long process, and can take a lot of different kinds of treatments to see any improvement.
So this brings us to the 2nd point on Dr. Holly’s slide, with 2 research projects on sleep and pain; not on CRPS. If you’re feeling sleepy, this would be a good time to do some stretches, or make a cup of tea!
The type of project reported by Finan et al, in 2013, is what’s sometimes called a ‘literature review’; this team looked at studies that had been done since 2005 – and compared them(5). They were looking at research on links (called ‘associations’ in medical journals) between pain and sleep, in a kind of ‘chicken or egg’ – or what comes first – approach.
They wanted to see if pain can predict – or lead to – sleep problems. Or if sleep problems can predict – or lead to – chronic pain. What they found is that “sleep impairments reliably predict new incidents and exacerbations of chronic pain”(5). If you have sleeping problems, you’re more likely to end up with chronic pain.
They also found that: “Recent experimental studies suggest that sleep disturbance may impair key processes that contribute to the development and maintenance of chronic pain, including… joint pain”(5). So it seems that if you have chronic pain & also have sleep problems, your chronic pain may be harder to treat.
The study by Schaefer et al was with 624 patients with neuropathic pain, not CRPS. They found that higher levels of pain meant worse “patient-reported outcomes (health status, physical and mental health, pain interference with function, sleep, anxiety, and depression)”(6). More pain translated to poorer “function, compromised health status and sleep, and increased anxiety and depression”(6).
Whew – all that for the short list on the left side of that slide! Now let’s take a look at that drawing or image to the right of the slide, with a circle at its centre. This is from a research article by Janet Holly (the presenter) with Tara Packham (7); Ms. Packham, an occupational therapist, gave the 3rd (and final) presentation of this session on CRPS. I’ll write about that one another day!
The 4 quarters, or sections, in the middle of the circle show what researchers think are the pathophysiology of CRPS. The types of functional changes, within the body, that can happen with this disease. But no one knows for sure if there are others, and what causes these changes. The fact that there are so many of the body’s systems involved in CRPS is one of the reasons it’s so difficult to treat.
So the 4 sections inside the circle are the way the symptoms & signs of CRPS are grouped now. This might change, if research provides any new clues into how this disease works:
- Autonomic; affects the involuntary nervous system or its functions; what’s sometimes called our reflexes (some examples of autonomic functions are blood pressure, digestive processes, heart rate, and the temperature of your body)
- Immune; the combination of cells, organs, and tissues in the body that that help it fight infections, viruses, and some diseases (the parts of the immune system most of us have heard of are; 1. the lymph system (e.g. bone marrow, lymph nodes, spleen, thymus, tonsils) and 2. white blood cells)
- Neuro-inflammatory; inflammation in the brain or spinal cord
- Neuroplasticity; how well the nerve cells in the brain (called neurons) can create new connections, that may help the brain deal with a disease/injury (and also to adapt to new challenges or situations)
Coming off of these 4 pathways of CRPS, like petals on a flower, are some of the different things (techniques) that have been used to try to treat CRPS. There are too many techniques to list, but here are some you may have heard of:
- Cognitive Behaviour Therapy (CBT)
- Graded Motor Imagery (GMI)
- Medical management (i.e. medications)
- Mindfulness, breathing relaxation, imagery
The last part of Ms. Holly’s talk was a series of reminders for people treating people with CRPS. From this part of her presentation, these are the points that resonated with me – that struck a chord – as a CRPS patient. I may not have written down her exact words; I’ve put in quotation marks what I remember her saying, or how I wrote it in my notes during her talk:
- It usually take several tries to find something that works for a specific person with CRPS
- It’s very important, for CRPS patients, to “address the whole person in the context of pain management”; the person – & their experience – has to be part of the treatment plan for pain, more than just the disease
- Building a “therapeutic alliance is key”; that each patient should be a partner in their treatment plan
- There are “difficulties in evidence-based rehabilitation strategies for N = 2 to N= 135” studies; because it’s a rare disease, it’s hard for researchers to study large numbers of patients to see if a treatment really works
- Before “labeling a patient as kinesiophobic, consider whether pain avoidance is actually an adaptive strategy to allow them to continue their activities”; I’ll explain this one in detail, because it’s important!
She told all the doctors, physiotherapists, and others in the room that the last point was one they should remember. It sounds really complicated, but it’s not. Kinesiophobia means avoiding movement, often because a person expects that the movement will cause pain. So a kinesiophobic CRPS patient would avoid moving the part of their body affected by the disease.
The rest of her comment means that if a patient knows doing an activity will cause a lot of pain, they may plan their day around that activity. She was saying that doesn’t mean the patient is kinesiophobic – it might just mean that they’re good planners! For example, I love to ride my bicycle – and try to still do that despite CRPS. I know that if I go for a long bike ride, I won’t be able to use my hand for a few hours after that – because of pain and swelling. So I don’t plan to do anything using my CRPS hand/arm for a few hours after a bike ride. I usually plan to read, or catch up on email on my phone. Something I can do with my other hand.
It was really nice to hear someone say that it can make sense for CRPS patients to plan in that way. Many other speakers at this conference gave me the feeling that there was something wrong with patients doing this kind of planning. That it was something that doctors and therapists should discourage patients from doing. But it’s not. We have to find ways to adapt to this nasty disease, and to do whatever works for us!
Thanks for reading, I hope this was helpful in some way.