The International Association for the Study of Pain (IASP) set the diagnostic criteria for Chronic Regional Pain Syndrome in 2003 in Budapest. It is called Budapest Criteria. The IASP created a list of 4 high-level conditions. Two of those conditions are broken down into four categories. The first of the four senior conditions is pain. The condition is listed as “continuing pain, disproportionate to any inciting event.”
Researchers complain that the “disproportionate to any inciting event” is subjective. And I agree with that, but the disproportionate level of pain is what a doctor or nurse would likely see first. What is missing is the description of the pain. It is not just bizarrely high levels of pain – it is the type of pain. It is a pain caused by nerves, not strained muscles, or a broken bone.
The National Institute of Health (NIH) lists only three examples of the pain: 1) burning; 2) pins and needles; and 3) feeling as if the affected body part is being squeezed. The CRPS Forum has some terrific information but only copies what the NIH lists for pain examples. The RSDSA has a better, but still limited, list of types of pain. They list “deep, aching, cold, burning, and/or increased skin sensitivity.” I am not going to address the increased skin sensitivity in this post because the Budapest Criteria put this under a different condition.
The reality of CRPS is that the people who have it, experience many of these types of pain. The kinds of pain overlap, and each nearly always trigger one or more secondary problems that can also be painful.
One problem is that those of us with CRPS spend our energy enduring the pain rather than thinking up words to explain how it feels. But this time around, my husband keeps asking me to explain. He wants to understand, and he is always hoping I will give him some clue that he can work with to change my situation. Until more of us tell our stories, the researchers will not have the information they need to make progress on solving this extremely complex neurological disorder.
Burning Pain
Burning pain is the flagship pain for CRPS. It is on some of the orange ribbons designated for CRPS awareness. And it is pretty easy to explain – it feels like your skin is on fire.
Shooting Pain
Shooting pain is the pain I remember the best from the first time I had CRPS. It is usually a sharp pain that runs down a limb. You can have just one shooting pain, several going the same direction, or several going in multiple directions. It can trigger muscle spasms, or it can only shoot pain along a nerve pathway. The shooting pain attack can last just a couple of minutes to several hours or days.
Aching Pain
When I think of aching pain, it is usually related to muscles that have been overused. So when the shooting pain forces the muscles into uncontrollable spasms, the muscles do get overused and exhausted. Over time, the entire body becomes exhausted from the various types of pain, and the result is the aching pain.
Stinging Pain
I don’t recall having this particular type of pain the first time with CRPS, but I did have it this week. I was sitting on the couch, watching television, and my leg started hurting. I am massaging it without much effect or any thought at all. My husband wants to know how it feels. I had to stop rubbing and pay attention to the pain. I told him it was stinging. That didn’t sound like something that would be hurting me as much as he could see. Trying to come up with descriptions that other people can understand is not easy. I finally said it feels like I am being stung by 1000 bees at the same time, and they don’t stop.
There is a CRPS Facebook Group that I have found useful and encouraging. The morning after my stinging pain, I posted on the Facebook site asking if anyone recognized that particular type of pain. In less than 24 hours, I had over 100 responses with a resounding YES! Some for short periods like mine, but some for days or longer. Several had said they hadn’t thought about bees, but about fire ants. (Fire ants inject a poison into your skin when they bite. Enough of this poison can kill you.) Some had grown so used to the stinging pain that they didn’t notice when they were being bitten by several fire ants. That is is extremely dangerous, as well as painful.
Deep Pain
Deep pain refers to pain deep in the body, such as pain in joints, muscles, tendons. It is usually dull and aching. From my experience, this is a result of the effects of burning or shooting pain.
Cold Pain
I hadn’t thought of this as a type of pain, but cold is excruciating. The conventional treatment for any surgery or injury is ice. The amount of pain an ice pack can induce in someone with CRPS is unbelievable. Shortly after I got home from the hospital (and before being diagnosed with CRPS again), I had to stop using ice packs. I switched to heating pads, which helped with the pain but didn’t do anything useful for the edema.
Pins and Needles
I am surprised to see this as the second example of pain by the NIH. The NIH defines “pins and needles” as an uncomfortable tingling sensation in their description of Peripheral Neuropathy. Yes, this happens, but “uncomfortable” is so low on the pain scale compared to the others.
Squeezing Pain
I wasn’t familiar with this in relationship to CRPS, so I looked it up. The technical term for squeezing pain is “intermittent claudication.” The description below is from the University of Wisconsin.
Intermittent claudication is a tight, aching, or squeezing pain in the calf, foot, thigh, or buttock that occurs during exercise, such as walking up a steep hill or a flight of stairs. This pain usually occurs after the same amount of exercise, intensifies until exercise becomes impossible, and is relieved by rest.
Intermittent claudication is a symptom of peripheral arterial disease. If the condition gets worse, leg pain may occur even at rest (rest pain or rest claudication).
Current as of: December 15, 2019
Author: Healthwise Staff
Medical Review:Rakesh K. Pai MD, FACC – Cardiology, Electrophysiology & Martin J. Gabica MD – Family Medicine & Adam Husney MD – Family Medicine & E. Gregory Thompson MD – Internal Medicine
