CRPS information from another doctor (11.06.2016)
This is one of those ‘a friend of a friend’ stories. One of my friends is a pre-retired nurse, now working part-time in administration at a small healthcare company. The firm specializes in full-time homecare for older folks who wouldn’t otherwise be able to keep living in their traditional home. It’s a fee-based service, which isn’t offered ‘for free’ within the public healthcare system in Québec (part of Canada). There are some government programs that can help with the costs, but none of them cover the full amount.
(Hopefully someday this kind of homecare – to help older people stay in their homes as long as they’d realistically like to – will be covered under Canada’s various provincial and territorial healthcare programs. For now, we’re far from that ideal; this is the kind of healthcare policy issue that I like to work on, as part of my bioethics (healthcare or medical ethics) role.)
As part of her job, my friend works with many different specialist physicians who provide consulting services to this company. The day after I was advised of my diagnosis, she mentioned this rare disease to a rheumatologist when he called in to answer a question. She told him that I was searching for definitions or descriptions of Complex Regional Pain Syndrome (CRPS), in medical journals and other scientific publications.
She called me that evening, to let me know that he’d referred to CRPS by its old name; Reflex Sympathetic Dystrophy (RSD). I’d told her that many (most?) of the physicians I’ve met so far call it RSD rather than CRPS. When I asked one of them about this, he said it was because most physicians feel that the words ‘sympathetic’ and ‘dystrophy’ are important to the name of this disease.
The next time this rheumatologist had a meeting at my friend’s office, a few days later, he brought her something – for me. It’s small book called “Thompson’s Rheumatology Pocket Reference”(1), written by Andrew E. Thompson, MD, another rheumatologist. He told her it was an old version, that he’d been meaning to toss into his recycling bin, and that he didn’t want it back. He said that there were a few pages on RSD/CRPS in the book that I might find interesting.
In typically Canadian fashion, she and I met for coffee at a Tim Horton’s coffee shop yesterday – and she gave me the book there. I was so excited to see “my” rare disease in a book that we read the 5 small pages right there, before we even ordered our hot drinks! The book’s only about 7″ by 5″, and less than 1″ thick, but the print is small so there’s quite a bit of information crammed into this small book ‘-)
The book’s 13 years old now, but I’ve been reading up on CRPS/RSD and there don’t seem to have been any real research breakthroughs so I’m guessing the book’s still current for this disease. So, are you wondering what it said?
One line in particular really struck me, and my nurse friend as well; she said that she’d never seen pain described using the word “exquisite” before:
For musculoskeletal signs and symptoms (see the post Signs or symptoms, from 2008 if you’d like to know the difference!):
- “Exquisitely sensitive extremity worse with movement or touch”
- “Shoulder may be exquisitely painful and swollen with reduced range of motion
It’s great to have an actual book at home now, that I can show to anyone who asks me about CRPS. After almost 3 months of being told that there was nothing wrong with me (other than the fractured radius (broken arm) that triggered the CRPS), and to ‘stop exaggerating’ the pain and other symptoms I was experiencing, I sometimes feel like I have to prove that there really is something wrong!
And because CRPS is an ‘invisible illness’ (i.e. I don’t look like anything’s wrong with me, unless you look really closely at my hand), some people I’ve told about the disease seem to think that I’m just making it up or something… and that can be very hard to deal with. So now I’ll be able to whip out this book and say “Look in this medical reference book – CRPS is listed as a real disease, along with fibromyalgia, gout, and lupus!”
Other than that, this medical pocket reference includes information that I’d already read in a few medical journal articles, which I found on PubMed. A few examples:
- There’s no known family history of CRPS/RSD (makes sense to me, as no one in my family seem to ever have heard of anything similar to this disease!)
- This disease causes pain at a much higher level than the injury that triggered it; some journal articles that I’ve read say that sometimes there isn’t any triggering event for CRPS
- Especially in the early phases, there is a lot of swelling (oedema), especially of the affected extremities; the hand(s) or foot/feet (that was the first thing I noticed, after the pain, before I ever had a diagnosis)
- CRPS can cause changes in the colour of the skin of the affected limb(s), likely due to changes in blood flow
- It can also, inexplicably as far as I know, cause changes in the skin temperature of the affected limb (the skin on my right arm, and especially my hand, sometimes feel very hot – while the other hand and arm are fine)
- The sympathetic nervous system is important in CRPS, which is why many physicians still call it Reflex Sympathetic Dystrophy (RSD)
- A multi-disciplinary approach to treating CRPS is best; physicians working together with physiotherapists and other healthcare workers (I was already working with a physiotherapist before I had a diagnosis, and she’s the one who convinced me to keep telling the follow-up physician at the hospital – for my fracture – that something was seriously wrong!)
- Both Stellate ganglion blocks and Bier blocks can be helpful, for pain and other signs & symptoms (I’ve had 6 stellate ganglion blocks so far, and my neuro-anaesthesiologist has me scheduled for a first Bier block in a couple of weeks…)
- The prognosis – how/whether a person with CRPS will recover – is very hard to predict, as each patient presents differently; every person with this disease may have a different experience of the disease, with different signs and symptoms or combinations of them. That’s one of the things that makes this rare disease so difficult to treat.
Neither my friend nor this rheumatologist wanted to be named; I’m writing a great big “Thank you” to each of you here – you know who you are!
(1) Andrew E. Thompson, MD. Thompson’s Rheumatology Pocket Reference. Trafford Publishing. 2003.