I’ve had a rough day. Despite sleeping for most of it, I am still in a lot of pain. Have been in a flare since noon yesterday. I just can’t seem to get on top of the pain.
I was hungry when I woke up around 2. I didn’t want to get out of bed. I just left my room once in the morning to use the bathroom. I brushed my teeth as well. My mother called me saying she was going to my aunt’s for a party. I heard voices downstairs and wondered if it was the TV. I carefully went downstairs and sure enough the TV was on. I had a bowl of cereal.
Came back to my room and took my pain meds. Also took some neurontin hoping for it to help. I couldn’t get comfortable on my right side so rolled to my left. I must have been there for a bit when it felt like I was being stabbed in my ankle and top of my foot. My phone rang and I got a couple messages. My niece had called asking how I was as my mother was worried. I decided to order pizza and dessert. I shouldn’t have but fuck it. I wanted pizza.
The following is the myths and truths about CRPS:
Fact versus Fiction: the Truth behind the CRPS Myths
Like many other things out there that scare and confuse people, Complex Regional Pain Syndrome has spawned so many myths about it. The bad thing is, these myths tend to perpetrate beliefs to people who suffer from CRPS that leads to their detriment. Listed below are seven of the most prevalent CRPS myths that are circulating, and the truth behind the myths.
Fiction # 1: Complex Region Pain Syndrome is a very rare disease. You have a small chance of getting it. It is also a new disease.
Fact: Substantiated reports of CRPS have been recorded since 143 years ago. It was during the Civil War when Doctor Silas Mitchell Weir and his contemporaries first wrote about it. It was given many names such as Shoulder-hand Syndrome, Reflex Sympathetic Dystrophy and Post-traumatic Dystrophy, to name a few. The term Reflex Sympathetic Dystrophy was junked during 1995 when the International Association for the Study of Pain, or IASP, feels that RSD did not truly cover the signs and symptoms that the illness presented. They were the ones that coined the term “Complex Regional Pain Syndrome”.
Fiction # 2: CRPS is a localized disorder, and will not spread.
Fact: In as many as 73% of the recorded and confirmed cases of CRPS, the pain actually started in one part of the body, and then started to spread. In the worst cases, it actually affected completely healthy internal organs as well.
Fiction # 3: CRPS is a relatively quick disorder, and can be gone in as little as 6 months.
Fact: CRPS is like riding a bicycle. Once you get it, it never leaves you. At present, there is no cure, only treatment and maintenance to relieve pain, and even this does not work for everyone. There are a very few lucky ones who experienced remission, but found that even little to no stimulus at all could trigger a relapse.
Fiction # 4: The pain of CRPS cannot be alleviated by opioids.
Fact: Studies have shown that the use of opioids does actually help patients suffering from CRPS. Opioids can lower the level of pain significantly, allowing patients to be able to receive physical therapy. In some cases, they can even help the person lead a pretty normal life. Many patients would not be able to survive or bear the level of pain that they would feel if they were not given opioid treatments.
Fiction # 5: It’s all in the mind. CRPS pain is a psychiatric one.
Fact: The pain that a patient feels can actually register on a pain scale, and the symptoms that accompany it are also very tangible. The signs of the pain are all very visible, such as changes in temperature, color and bruising. Limb atrophy or contracture can also be seen. This myth is quite prevalent, as even some medical professionals put stock into it.
Fiction # 6: CRPS can only be caused by major injuries.
Fact: Records show that, surprisingly, CRPS is most often caused by small injuries or surgeries. The most common reasons given when asked the CRPS cause were sprains, broken bones and minor surgeries such as carpal tunnel surgery and removing a foot neuroma.
Fiction # 7: A definite sign to know if you don’t have CRPS is if you don’t get relief when you use a sympathetic nerve block.
Fact: Just because it doesn’t get affected, doesn’t mean it’s not CRPS. It could mean that your pain is what is called as SIP, or Sympathetic Independent Pain. For those who are suffering from CRPS that do get relief from sympathetic nerve blocks, they are suffering from SMP, or Sympathetic Maintained Pain. If you get a series of blocks, you may put your CRPS into remission. Also, it can result in longer periods of being pain-free. Because this myth is also a widespread one, many people have delayed seeking this kind of treatment, believing that they do not have CRPS.
Always take everything you hear with a grain of salt, and remember that the best weapon is knowledge. It won’t hurt to read and talk to an expert about Complex Region Pain Syndrome so that you’re better prepared to deal with it, and the life that comes with it.