So I will admit this article might be somewhat controversial. But please reserve judgment until you’ve read it! Deal?
As a CRPS/RSD patient (among multiple other chronic illnesses & 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 CRPS 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 amputation as a successful treatment for CRPS pain is a dangerous message to send to fellow patients.
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 intense pain of CRPS, but advocating for amputation? I’m sorry but I just can’t get behind this as a sole “treatment” for CRPS. Many of these disturbing pictures and articles are from other countries I’ve noticed, but this is a universal problem. The fact is, amputation for CRPS pain is a VERY rare, highly controversial treatment of last resort and you will be hard pressed to find a doctor in the US (or elsewhere) who will agree to amputate a limb (or multiple limbs) based on just CRPS pain. This is because pain relief is very rare from amputations, and can even cause phantom limb pain, additional medical issues, infections and greater disability. Many times wearing prosthetics isn’t even an option in these cases either.
Here’s the honest truth as I know it When CRPS is diagnosed, nine times out of ten 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 things 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 these symptoms to be true myself), so please don’t misunderstand what I’m saying. What I AM saying is that CRPS on its own is so very rarely the single sole cause of many of these extremely worrying pictures and/or necessitates amputation.
Because I offer peer support/coaching, particularly for those newly diagnosed with CRPS, I am asked all the time about images and articles from Google that portray CRPS in this 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 actual symptoms of CRPS and realistic pictures of CRPS 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. CRPS is very poorly understood as it is, and when this kind of questionable reporting is put out on the internet, it sets back the understanding of CRPS 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 community (and other “normals” who google CRPS) more of the reality of what CRPS actually entails.
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 blog I wrote with links, articles and websites they might find useful in painting a more realistic picture of CRPS (link below).
As CRPS patients, Dr. Google can be a godsend for us, but we need to be careful with what we read (and share), and be able to decipher between the accurate and inaccurate items when it pertains to our chronic medical diagnoses. 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 and internet community as a whole.
You may or may not agree with me but thank you for letting me express my opinion! Please tell me how you feel in the comments below.