RSD / CRPS News Coverage: (link opens in new tab)
I am always grateful to see stories about CRPS / RSD that reach a large audience. Jim Moret, Huffington Post contributor and Chief Correspondent, “Inside Edition,” Attorney and Author of “The Last Day of My Life” writes about his young sons battle with CRPS / RSD.
It’s been nearly two years since our son’s debilitating and excruciating pain in his left foot was first diagnosed as CRPS, Chronic Regional Pain Syndrome, also known as RSD, Reflexive Sympathetic Dystrophy. The condition is a little known and difficult to diagnose nerve injury, where simply put, a nerve is stuck in the “on” position, sending signals of intense pain to the brain. His first bout with CRPS kept him bedridden for six weeks. He was unable to touch his foot without experiencing knife-like pain. I fashioned a foam pillow to keep his foot suspended safely out of harm’s way, but the pain itself was insufferable and unending.
Read the whole story at The Huffington Post
Something my brother and tens of thousands afflicted with CRPS / RSD have and will experience is the denial or misdiagnosis of their pain by medical professionals. You know the story, you keep going back to your Doctor looking for answers to your pain only to be told, “It’s all in your head”. Meanwhile, the pain gets worse presenting many other serious physical / life issues. Well not only do I think that this is sad and unfortunate but considering the level of pain associated with CRPS / RSD, the complications of no treatment, as well as, the resulting loss of movement, career, sleep and sanity etc. can only be labeled as abusive.
So why is CRPS / RSD misdiagnosed or denied? Some think the reason is because it is so poorly understood. Different patients present with different symptoms and respond to different treatments. Some think it’s because there are so many people seeking narcotics for reasons other than pain that Doctors are ambivalant to prescribe treatment for something they cannot “see”. It could be because many in the medical community, even today, know nothing about CRPS / RSD. As well, in some cases the denial could even stem from a Doctor who doesn’t want to admit the surgery he performed could have started the CRPS / RSD nightmare. Whatever the case, with pain being a leading cause for suicide, one can only wonder if it is the actual pain levels and consequent life struggles that caused people to make such a horrible decision to take their own life or rather being told over and over again, “It’s all in your head”.
Cynthia Toussaint is a pain warrior you may recognize as a longstanding advocates for CRPS / RSD. I first was introduced to Ms. Toussaint while watching the television series “Mystery Diagnosis”. She has suffered not only with CRPS / RSD for over 20 years but for at least the first decade experienced terrible denial of her pain by the medical professionals who “treated” her.
Cynthia Toussaint now champions women in pain through her For Grace website. If you go to the website you will see several recent news reports regarding the misdiagnosis and denial of pain and CRPS / RSD. I couldn’t seem to embed one but here is an example from 2009:
As well those at For Grace hold annual pain conferences. Although geared towards women the hope is still there that everyone experiencing pain, especially CRPS / RSD patients will hear, ” I acknowledge your pain” , instead of, “It’s all in your head”.
Healthboards is an online health forum type website. I typed in RSD and it led me to the spot you will hit when clicking the link. Also tried typing in CRPS and you get another list of threads to read. One thread was all about Spinal Stimulation and another asking for ideas to sleep more comfortably. Check it out. know I sound like a broken record but the shared knowledge is priceless.