Since being diagnosed with CRPS in January 2016, I have continued to educate myself and those around me. After months of dedicated research, careful journaling, counselling from other CRPS patients (shoutout to the best neighbour ever), and living with the condition, there are still many dots that haven’t been connected for me. Aspects of CRPS still make little to no sense to me, and I know I am not alone.
“The more I learn, the more I realize how much I don’t know.” -[gratuitous] Albert Einstein quote
So, this post is an effort for me to answer some of the common questions I receive from people that can’t really be Googled. If you still have questions about the academic side to CRPS, please visit my Google doc (https://docs.google.com/document/d/1ZaK9QrW8SD7AuJEdvPmccewKL0A_LN4HMp70afL_azk/edit?usp=sharing) and give that a read first. I also use the Google doc to build up the research list at the bottom; there are some critical research documents I believe all CRPS patients and caregivers should read…
Q: When did you know something was wrong?
The pain seemed to be disproportionate to my initial injury (thought to be a minor Medial Collateral Ligament sprain, as well as some surface damage to a previously healed Osteochondritis dissecans lesion at the end of my femur in the same general region) pretty early on, however I was repeatedly convinced by my growing list of health practitioners that the pain was normal for this type of injury. The initial injury happened on July 3rd, 2015, and by August 20th I think I knew that something was off. August 20th was when I tried acupuncture with my trusted doctor of eight years and several successfully healed conditions. Instead of the usual brief discomfort followed by relief and general relaxation, the appointment was painful and felt somewhat like torture. I told my doctor about my experience, and he said it was an atypical reaction, but nothing to be concerned about. From that day on, that pain climbed as mobility decreased, eventually putting me on mobility aids. In my gut, I knew something was off after that acupuncture appointment, but I was truly convinced of it by November when I became bedridden and had to withdraw from school. It was at that time I hired a private service to have an expert look over my file remotely, and was diagnosed with CRPS. I saw over a dozen doctors as well as other practitioners (physiotherapists, rehabilitation specialists, my acupuncturist, alternative energy therapists) before I got my answer from the private service. I also had a private MRI performed in September that suggested I had a deeper chondral lesion so that threw me off as well, as a cartilage injury could account for the pain at the time. I should also note that I had never heard of CRPS before I was diagnosed with it. A family friend who is a surgeon (not orthopaedic) suggested offhandedly in November, that he hoped that I “don’t have Chronic Pain Syndrome”, but he was not referring to Complex Regional Pain Syndrome. I asked him later and he said he was generally referring to a family of conditions involving chronic pain (such as fibromyalgia, GI disorders, neuropathies, etc.) as an umbrella term.
Q: Are you constantly in pain?
One of the weirdest aspects of CRPS is that although I have a constant pain, I also have other sensations such as allodynia that don’t seem to follow patterns. I personify my constant pain as a boa constrictor named Bea Arthur (dry sense of humour, dull pain…”to feed the cat, Rose!”), and sometimes Bea is a bit stronger or weaker depending weather, and other less identifiable factors. Generally, Bea is constant. I have other pains that crop up though, more sharp/tingly/neuropathic-type pain and those are less constant and sometimes almost random. Then, there is the allodynia that causes me to be very sensitive to vibrations, wind, folds in my sheets, certain clothing, and basically that list goes on and on. The allodynia is very intermittent, and can vary wildly from moment to moment. There are days where someone stepping into my room can set me off, where Harleys driving on the street make me cry, and then other days when I can almost barely feel it when someone steps into the room. There are some other sensations as well, but the gist is that I do have a constant sensation as well as many varying “bonuses”.
Q: You say you are ‘bedridden’, so what do you do all day?
Depending on how I feel, my day consists of: meditating, visualization, physiotherapy exercises, self-prescribed ROM (range of motion) and strength exercises, following my medication/natural supplement regime (sometimes close to 20 pills a day), reading, research, writing, Netflix, knitting, playing with my dog, and sometimes I can make it outside for sun/appointments. I use crutches to get around, and hopefully I will keep regaining strength to move back to my cane, then eventually no mobility aid. On a heavy day, I can’t accomplish very much. Even on a good day, I don’t often accomplish every item on that list. My favourites are visualization, research, and playing with my dog!
Q: I heard about Therapy X/ Doctor Y/ Idea Z, have you tried Therapy X/ Doctor Y/ Idea Z?
I am constantly trying to track down new ideas, treatments, and providers. I am the kind of individual who likes to know all the possibilities before I make a decision so it makes sense that I devote a lot of my time to research and furthering my own knowledge of CRPS. If you have found Therapy X/ Doctor Y/ Idea Z, and believe it would be useful to me please send me an e-mail or comment with information. I am always building my list. However, please don’t get offended if Therapy X/ Doctor Y/ Idea Z does not pan out for me.
Q: How do you not go crazy?
I try as hard as I can every single day. My support system is amazing, and they really keep me up. I have days that seem harder than others, but ultimately I am a stubborn ass so I refuse to let this beat me. Also, I take pills for that! Hah!