The Danger of ‘Dr. Google’ With Complex Regional Pain Syndrome

So I will admit my opinions might be somewhat controversial. But please reserve judgment until you’ve read the whole story — deal?

As a complex regional pain syndrome (CRPS)/reflex sympathetic dystrophy syndrome (RSD) patient (among multiple other chronic illnesses and pain), I am quite tired of seeing images of extremities swollen up so intensely to look like a balloon, or gangrene on a foot or hand, toenails or fingernails fallen off or various other extreme and unsettling pictures represented as CRPS! I’m also tired of reading articles about complex regional pain syndrome patients who are happy they have had a limb (or multiple limbs) amputated. One article I read recently of a double amputee CRPS (very young) patient even called herself an amputee advocate?!” A CRPS amputee advocate?! Don’t get me wrong — if her pain is improved, I’m happy for her; but promoting amputation as a successful treatment for CRPS (or any) chronic pain is a dangerous message to send to fellow patients.

I admit, many of us (myself included), have wanted to tear off our limbs or get them amputated more times than we can count because of the continuous and tortuous pain of CRPS, but advocating for amputation? I’m sorry but I just can’t get behind this as a sole “treatment” for CRPS.

The fact is, amputation for complex regional pain syndrome pain is a very rare, highly controversial treatment of last resort and you will be hard pressed to find a doctor in the U.S. (or anywhere really) who will agree to amputate a limb (or multiple limbs) based on just CRPS-related pain. This is because pain relief is very rare from amputations, and amputations can even cause phantom limb pain, more medical issues, infections and greater disability. Many times wearing prosthetics isn’t even an option either.

Here’s the honest truth as I know it:

When complex regional pain syndrome is diagnosed, nine times out of 1- there is an inciting event or trauma — i.e., a broken bone, surgery or medical procedure gone wrong, slip or fall, nerve injury, car crash or any number of injuries or illnesses that may cause it. So these underlying injuries and inciting events are co-morbid conditions along with CRPS. In addition, CRPS can also cause additional medical conditions and diagnoses. These non-CRPS conditions can cause many other symptoms and issues, including lymphedema (extreme swelling of an arm or leg caused by a lymphatic system blockage), gangrene, cellulitis, sepsis and a whole host of problems that will cause the horrendous pictures we see and articles we read on the internet that are being represented as only CRPS.

Now, I’m not saying CRPS isn’t present as well in these cases and I’m not saying CRPS doesn’t make one’s extremities swell or turn various colors, or that one’s skin doesn’t crack or have rashes, etc. (in fact I know all too well these symptoms are a part of CRPS), so please don’t misunderstand what I’m saying. What I am saying is that CRPS on its own is very rarely the single sole cause of many of these extremely shocking pictures and/or need for amputation.

Because I offer peer support/coaching, particularly for those newly diagnosed with complex regional pain syndrome, I am asked all the time about images and articles from Google that portray CRPS in this extremely negative light. I hear the unwarranted fear and anxiety from patients and their caregivers who have seen and read this “CRPS-related propaganda.” So I have to educate them on the symptoms of CRPS and sometimes send examples of realistic pictures of CRPS-affected limbs. I also have to explain that just because your foot or hand (etc.) doesn’t look like these alarming pictures, it doesn’t mean you don’t have CRPS. CRPS, aka, “the suicide disease,” is the most severe form of chronic pain there is according to the McGill Pain Scale. It is bad enough without having to make it look and sound worse than it is, thereby causing new patients unnecessary stress that hinders their ability to have hope and healing.

Counteracting “Dr. Google” and the media is becoming very frustrating and more difficult. Complex regional pain syndrome is very poorly understood as it is, and when this kind of questionable reporting is put out into the world, it sets back the understanding of CRPS and rare diseases even further. I urge those who are posting pictures like this or writing articles where amputation is warranted to explain all the facts of their underlying injuries, illnesses or co-morbid diagnoses and medical conditions in addition to their CRPS. It will give the entire community a lot more hope and reality of living with complex regional pain syndrome when inadvertently comparing our own journeys.

To help newly diagnosed patients (as well as patients who have had CRPS or chronic pain for a long time even) find more accurate CRPS/RSD resources, I direct them to a guest blog I wrote for the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) with links, articles and websites they might find useful in painting a more realistic picture of CRPS (please note some of the links are invalid as it was written a while ago).

As CRPS and rare disease patients, Dr. Google can be a godsend for us, but we need to be careful and use critical thinking with what we read (and share), and be able to decipher between the accurate and inaccurate items when it pertains to our chronic medical issues. Each and every one of us has a duty to be a voice for ensuring the integrity and accuracy of our diagnosis is upheld — not only for fellow patients and healthcare professionals, but also for the chronic illness/pain community as a whole. Finally, it goes without saying, but never substitute Google (or peer groups) for the medical advice of your personal trusted physician(s), and please don’t be afraid to get second and even third opinions!

You may or may not agree with me, but I do appreciate you letting me express my opinions. Please tell me how you feel in the comments below. Thanks my fellow Warriors!