September is Pain Awareness Month, an important time of year for folks like me who live with – and despite – chronic pain. (1) It’s an opportunity to raise awareness of the difficulties we face, in everyday life and in getting specialized pain treatment through healthcare systems. As I’m a patient advocate and mentor to others who live with persistent pain, I really take this mission of awareness-raising to heart.
You may even have read about my little chronic pain and CRPS awareness buddy/bunny, Max, who is very popular over on Instagram. He helps me start conversations about pain – and about my own rare disease, Complex Regional Pain Syndrome (CRPS) – even with strangers. Max does this with a touch of humour, by getting people to ask me about what his story is and why he’s out and about – whether I’m out on my bicycle, attending art events, or participating in healthcare conferences and presentations.
This month, the conversations I’ve been having tend to involve what is being called a “chronic pain crisis”. (2) The U.S. Pain Foundation recently released their 2022 Report showing the most common types of chronic pain, at least in the United States. There’s no reason to suspect that the findings would be significantly different here in Canada, so let’s look at their findings They begin by saying that: “The most common pain conditions were primarily musculoskeletal in nature”. (2)
Before we look at the lists of most common pain conditions, I want to mention something about the percentages in these lists. If you add them up, you’ll end up with quite a lot more than 100%. This doesn’t mean that the Report is flawed, or that the authors can’t add or don’t understand that you can’t have more than 100% of something! Instead, the pain conditions reported add up to well over 100% because “only 5% of respondents had just one condition”. (2)
In fact, 20% had 2-5 conditions; 30% had 6-10 conditions; 24% had 11-15 conditions; and 21% had 15 or more conditions …
These enormous figures further underscore the complexity of the health of this patient population.” (2)
The detailed breakdown of the most common types of chronic pain, from this 2022 report, is:
- back pain (67%)
- arthritis (56%)
- chronic low back pain (56%)
- nerve pain or neuropathy (53%)
- neck pain (51%)
The authors also noted that many people in pain have the following types of conditions, which are the next most frequent causes of chronic pain:
- muscle spasms (38%)
- hip pain (37%)
- headache (36)
- fibromyalgia (36%
- osteoarthritis (33%)
- upper/middle back pain (31%)
- irritable bowel syndrome (28%)
- chronic migraine (27%)
- spinal stenosis (27%)
- migraine (26%)
- sciatica (25%).” (2)
There’s no mention of CRPS here, which I expected, because it’s a rare disease. By default, being rare means that I wouldn’t expect CRPS to appear on any list of common things, although one of the many symptoms of CRPS is nerve pain or neuropathy – which is one of the most common pain types at 53%.
Do you remember just above, when that the authors said that most people who live with chronic pain have more than one painful medical condition? Well, it turns out that I’m a good example of that! I also have IBS, or irritable bowl syndrome (along with 28% of the people in this report), asthma (which can be quite painful, when I’m struggling to breathe), and psoriasis (bleeding patches of itching skin on my scalp, hidden by hair, and also hidden inside my ears).
Then there are the two herniated disks that I’ve had (L4-L5 and L5-S1), from sports injuries many years ago. Although both injuries are now mostly healed, I still feel them if I overdo it with any activity that requires bending forwards – like gardening – or lifting. So I’ve been told that I should still consider these continuing back issues as a ‘chronic pain condition’, as they flare up at least once a month – even if only temporarily because I’ve gotten good at preventing them.
How many pain conditions is that, just for me? Five; asthma, lower back issues, CRPS, IBS, and psoriasis. This means I’m one of the twenty percent (20%) of people who have 2-5 different pain conditions, as we saw above. It also means that, even on a ‘good’ day for me CRPS, I’m probably still feeling pain from one – or more – of those other pain conditions!
And that’s far from uncommon, for people living with pain. A “2011 Institute of Medicine report … noted the increasing recognition that some common or highly prevalent chronic pain conditions appear to coexist, and these coexisting conditions appear to be more prevalent in women compared with men.” (3)
As for my own rare disease, the cause of CRPS remains unknown. This means that there are no effective treatments, because researchers don’t know what to try to target or how to relieve the many different pain symptoms that this one condition causes. Doctors can only try to treat the symptoms, which is always difficult – like trying to play pin the tail on the donkey – without the donkey as a target! It’s a truly nasty disease, and one that affects adults more often than children.
Even physicians consider CRPS to be a difficult condition, and frustrating because there isn’t much they can do to really help their patients:
This condition is enigmatic in nature.
It has been historically difficult to diagnose, arduous to treat, and the pathophysiologic mechanism behind its development has not been clearly defined.” (4)
So CRPS is challenging for both patients and healthcare professionals, in part because all we can do – even with the best multidisciplinary pain management team – is to try to manage its symptoms as best we can. There’s no research evidence to back up any particular treatment yet, and even more confusingly each patient with CRPS may have a different set of symptoms. In effect, any given CPRS patient may have their own unique version of this disease:
complex regional pain syndrome (CRPS) – multiple system dysfunction, severe and often chronic pain, and disability… has fascinated scientists and perplexed clinicians for decades” (5)
But it’s not only CRPS patients who have trouble getting adequate care for their pain symptoms. This is actually something that comes up very often for patients with most types of pain conditions. One of the key findings of the 2022 report, from the U.S. Pain Foundation, is that:
At best, people with pain feel their health care providers are not equipped to manage their pain effectively; at worst, people with pain feel unsupported and stigmatized.” (2)
Not only are people left with insufficiently treated pain, they are also left feeling stigmatized by the healthcare system itself – on top of their pain. The most widely-recommended approach to chronic pain care, called ‘multidisciplinary pain management’ or “multi-disciplinary pain treatment”, can be hard to find – most notably outside of large urban areas – and very expensive.
Even here in Canada, with our plethora of publicly-funded healthcare systems – one for each province or territory, along with private health insurance, public plans for federal governmental employees (like military members), plans for unionized provincial employees (including nurses and physicians!), and more – the costs of multidisciplinary pain care can be out of reach.
Physiotherapy is often recommended for elders with arthritis, for example, to encourage increased physical activity while preventing injuries and increased pain. But this isn’t covered by our public health insurance, unless the physical therapy is provided in hospital following surgery or a major accident that was treated in that hospital.
In my area, a 30-minute session of physical therapy costs about $60, while a one-hour session runs about $125. That’s a significant expense for someone living on a limited income, and bear in mind that chronic pain conditions tend to need more than one session of physiotherapy. On top of that, the initial assessment or evaluation with a physical therapist is usually even more expensive than that – before a patient starts getting any treatment at all!
As another personal example, I had physiotherapy three times a week for my CRPS-affected right hand and arm… for well over a year. My group insurance plan was good, but it only covered up to $3,000 per year for all types of ‘additional therapies’ combined; massage, physiotherapy, podiatry, osteopathy, and more were all lumped into one category of care.
This was quite a while ago, so let’s use a hypothetical price of $100 for each one-hour session; we’ll ignore the additional cost of the assessment or evaluation. That’s $300 per week, or $1,200 per month, for a staggering annual cost of $15,600 per year. Even my ‘good’ group insurance plan only covered $3,000 of that, leaving an out-of-pocket cost of $12,600.
If we switch to today’s prices, in my area, at $125 for an hour-long session of physical therapy, the current cost of three-times-a-week care would be almost $20,000. Even with a group insurance coverage maximum of $3,000 per year, the cost would be a stunning $17,000. But group insurance plans tend to cover only people who are still in the workforce, and who have good jobs.
Most elders have only our public health insurance plans, which don’t cover any physical therapy (unless provided in hospital after major accident or surgery), which is the same situation for many small-business owners, along with people doing hourly-wage or contract work.
So it came as no surprise to me that another one of the Key Findings of the 2022 report was that: “Due to high out-of-pocket costs – coupled with pain’s drastic impact on the ability to work – cost remains the primary barrier to pain care.” (2) If we look at percentages again – because reports love providing numbers! – “the leading barrier to treatment was cost (49%).” (2)
Too often, as we’ve seen above, people in pain are left stigmatized by the healthcare system itself. To add insult to injury, these people are frequently told that the best treatment for their pain would be a long-term therapy that they’d have to pay for themselves… In my case, for CRPS, that amounted to over $20,000 to regain some limited use of my right hand. My husband and I had been saving for years, to renovate our kitchen; instead, we ‘renovated’ my hand.
But how many people really have that choice, to spend $20,000 on physical therapy? Or even once-a-month treatments for $6,500 per year? That’s not pocket change…
These are some of the reasons for which I raise awareness of chronic pain; not only to encourage researchers to focus on pain conditions, but also to explain the impact of living with a chronic pain condition on an individual or a family. Because this could happen to anyone.
My CRPS rare disease was triggered by a simple broken arm, an injury that healed well and didn’t even need surgery. But, for some reason, this specific type of fracture is known to sometimes lead to the development of this condition. CRPS has impacted my entire life, stolen some of my dreams, and continues to affect not only me but also my loved ones.
And there a so many more stories out there, of other people living with persistent pain. Here in Canada alone “nearly 8 million Canadians live with chronic pain”. (6)
That, folks, is why I share my own story. To try to raise awareness for all of those who are in pain and struggling too much to just get through the day – for the people who don’t have a voice because they’re in too much pain to raise it.
As always, thanks so much for stopping by. Feel free to comment or just say hi over on Instagram or Twitter. There’s no Comments section here on the blog, because it became too much for me to handle because of a CRPS-related ‘mild cognitive impairment’ … I’ve had to disable the Comment feature, but I do still love to hear from you! Stay well, and keep safe…
References
(1) International Association for the Study of Pain (IASP). Pain Awareness Month. IASP Web page. Undated (2022). Accessed 15 Sep 2022:
(2) The U.S. Pain Foundation. A Chronic Pain Crisis. Report. 2022. Online. Accessed 15 Sep 2022:
https://uspainfoundation.org/wp-content/uploads/2022/07/A-Chronic-Pain-Crisis-US-Pain-2022-FINAL.pdf
(3) Maixner W, Fillingim RB, Williams DA, Smith SB, Slade GD. Overlapping Chronic Pain Conditions: Implications for Diagnosis and Classification. J Pain. 2016 Sep;17(9 Suppl):T93-T107. doi: 10.1016/j.jpain.2016.06.002. PMID: 27586833; PMCID: PMC6193199. Online. Accessed 15 Sep 2022:
https://www.jpain.org/article/S1526-5900(16)30084-0/fulltext
(4) Shim H, Rose J, Halle S, Shekane P. Complex regional pain syndrome: a narrative review for the practising clinician. Br J Anaesth. 2019 Aug;123(2):e424-e433. doi: 10.1016/j.bja.2019.03.030. Epub 2019 May 2. PMID: 31056241; PMCID: PMC6676230. Online. Accessed 15 Sep 2022:
https://bjanaesthesia.org/article/S0007-0912(19)30235-1/fulltext
(5) Clinical features and pathophysiology of complex regional pain syndrome. (Review Article.) Johan Marinus, G Lorimer Moseley, Frank Birklein, Ralf Baron, Christian Maihöfner, Wade S Kingery, et al. The Lancet Neurology. 2011(10):7; 637-648. 01 July 2011. doi: 10.1016/S1474-4422(11)70106-5. Online. Accessed 15 Sep 2022:
https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(11)70106-5/fulltext#secd13577181e290