Google Has Some Explaining To Do With Terrifying CRPS / RSD Images & Articles

Google Has Some Explaining To Do With Terrifying CRPS / RSD Images & Articles

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.

Melissa Wardlaw

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).

https://rsds.org/resources-for-patients-with-crps-rsd-and-chronic-pain/

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.

Authored by: Melissa Wardlaw

Melissa Wardlaw was diagnosed with CRPS/RSD as a result of a spinal cord injury (non-paralyzing) suffered during a routine medical procedure. She also suffers from fibromyalgia, lumbar and cervical degenerative disc disease, migraines and additional chronic medical issues. Formerly a Business Executive/Consultant with an MBA in Entrepreneurship, she is also a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and offering peer counseling/advocacy (pro bono) to those dealing with similar medical struggles. As a fierce advocate, she also runs both in-person and online support/empowerment groups for CRPS/RSD and chronic illnesses/pain in the Metro Atlanta area. A “fur mom” to two cats, Melissa is an avid volunteer and supports multiple organizations committed to rescuing animals and helping those with chronic illnesses/pain. She can be reached at crpsatl@gmail.com.

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Hannah CRPS

20 years ago the CRPS started for me for no apparent reason in one hand, a year later it spread to the other hand and then in 2012 it went full body. The CRPS for me has never made my hands swell grotesquely or go horrible colours but the images on google show something completely different. Yes some people do have limbs like the google images but to only have those images on google when you are newly diagnosed is completely wrong when there seems to be nothing else eventhough CRPS affects everyone differently.

C.M. another CRPS'er

I have had CRPS type 2 for 10 years now. I had/have every symptom described in the Budapest Criteria. I was diagnosed by 3 different doctors at 3 different places (Harvard Medical/Mass General/Independent Pain Specialist). Now, if one saw my foot/ankle/lower leg without comparing it to my ‘good leg/foot’ they might think it looked ‘normal’. However, when looking & touching them side by side it is obvious there is significant; temperature differences, decreased range of motion, weakness, joint & bone issues, less hair growth, swelling, mottling/color[s], and basically the whole bag of tricks CRPS gives us. I can assure anyone that may be curious – the pain is just as severe without having the exacerbated visual symptoms that I had as a constant before, for years, in a cold climate. When I moved to a warmer climate the visual aspect slowly became less noticeable but, the pain is the same, the exact same. If it does get cold outside, or I’m in an extremely cold air-conditioned room, the ‘visuals’, colors & swelling, appear much more pronounced again, within an hour or so depending on how cold it is. I think that may be part of the point the author is making here; not all of us have those horrible visual aspects as much as we used to. I have hundreds of photos of when I did, & I still take photos, if obvious or not. And, as mentioned, in comparison to my good foot/leg it is very apparent all those symptoms are there but, to look at it by itself it would not seem like anything were wrong, it’s just not nearly as obvious as it used to be. The pain certainly is though. Please remember, we are all different.

Janice Ferris

I really did enjoy reading your article. I have lived with CRPS since 2010 and have only started to build a life that I am ok living. Most of those years were spent advocating for a medically assisted death as I did not want to leave a suicide legacy to my children and extended family.
Ketamine medication infusion and oral has been my savior.
I believe you are right that we need to guide newly diagnosed individuals to more positive images but at the same time those horrible images that we do see is part of CRPS. It was nick named the suicide disease because suicide rates are very high.
The change needs to be made within the medical community and the movement has started. Patients are starting to be diagnosed sooner. Historically most individual I have had contact with have seen over 20 different doctors before being diagnosed. That in itself traumatizes the patient.
Being looked at as a drug seeker…how horrible to be in that much pain and not being helped by our medical system.
I agree that more variations or degrees of visuals would be good for newly diagnosed people.I really do believe that our efforts need to be in the area of education of the whole community.
I am actually grateful for those images of swollen, purple, nail missing limbs. In the middle of the night when every second thought is God please let this be my last breath…..there was something I could look at and think………..it could be worse.
Again, thank you for all the work you do within the CRPS community and bringing it to the outside world too.

Janice Ferris

Sandra Auriene Sullivan

Completely agree. They have only the worst examples of most diseases online and in medical journals and that can cause a dx of crps being missed (or shingles as happened to me because they were not extreme examples in my eye and it reoccurs. I had to get help from the hospital because my primary wasn’t familiar enough. Now antiviral is on refill till I get the vax at 50)

I too have CRPS in my left foot. My foot ballooned once. Abscessed once and was missed too.

In the end, I had to treat symptoms. My pain specialist is clueless about it. My foot is in a mild remission (no abscess or swelling) because of MMJ concentrates and only wearing Birkenstock shoes. The toe bar helped pain soooooo much I am walking again without a cane.

But you’re spot one! It’s a top complaint of mine too.

Yvonne

I understand what the author is trying to say, however my affected limbs are very swollen with skin changes and colors. I have a problem with some stating they have CRPS yet have no swelling, no skin changes, nothing to indicate they have CRPS. The Budapest Criteria is the gold standard for diagnosing this disease and the patient must have at least one of the four areas to correctly diagnose the disease. I have seen pictures of a hand, leg or foot, that has no swelling, no skin changes, no temperature changes and I question whether the person has been correctly diagnosed. Pain, whether it’s burning or not, alone is not a correct diagnosis of this disease. There are countless neuropathic diseases where there are no skin changes, no swelling, nothing except pain. That alone does not mean the patient has CRPS. Diabetic neuropathy is one example of possible misdiagnosed CRPS. Those of us who have not only the burning pain that comes with the disease also have the ugly swollen limbs, the funny colors, the very thing the author doesn’t like to see. We should be the poster children for CRPS because we experience not only all those ugly pictures but we also suffer spasms so severe on top of all the pain that have us screaming in agony, that cause contractures and our hands become useless and because it does spread, mine started in my left foot, our feet and legs turn in at awful angles, when I see pictures of a hand or foot that has nothing to indicate it’s painful, I would give anything to have my hands or feet “look normal.” Reason being, all those ugly symptoms many of us do exhibit, bring about more pain and agony.

I do agree with Melissa about amputation. It should only be a last ditch treatment as amputation has been proven to cause the disease to spread and be worse than before the amputation. Patients contemplating suicide need to see those pictures where it has spread, so not only does the patient suffer from phantom limb pain, CRPS pain that was the reason.

Margie

I saw those images too and thought that’s not what I have. Since blood clots made both legs swell instead of just the one that was affected my legs have low burn feelings but when my back goes out the burning unbearably couldn’t even tell I smeared capsaicin all over legs to get rid of burning. I couldn’t fill the capsaicin at all. Usually just tiny bit intolerable. I told E.R doctor how much pain I was in and what I tried to fix myself. He didn’t believe me. I wish I knew what real pictures look like. I wish doctors cared . I gave up going to them pretty much. Down to two. Really thinking about none. What good has it done to see any.

WILSON HULLEY

ALL OF MY YRS. WITH WHOLE BODY RSD…IT STILL LEAVES ME WONDERING “HOW IN THE HELL” OUR MEDICAL SCHOOLS CAN STILL PROVIDE LIMITED TEACHING ABOUT RSD/CRPS. IT USE TO BE BECAUSE THEIR TEXTBOOKS LACKED SOLID INFORMATION ABOUT RSD/CRPS….AND HAND OUTS WERE NOT ALLOWED…

TODAY THE MEDICAL STAFF WITHIN THE JOHNS HOPKINS FAMILY STILL HAVE VERY LIMITED INFORMATION ABOUT RSD/CRPS.

WHEN, AS I DO HAVE WHOLE BODY RSD/CRPS – I END UP GOING TO HOLY CROSS OR ADVANTISTS HOSPITALS BECAUSE NO JOHN’S HOPKINS {SIBLEY) HAVE ANY MEDICAL STAFF WITH ANY WORKING KNOWLEDGE OF RSD/CRPS……..EVEN GW IN DOWNTOWN WASHINGTON, DC HAS TWO(2) RN’S ONLY WITH ANY KNOWLEDGE OF RSD/CRPS WITHIN THEIR ENTIRE MEDICAL STAFF…

A REAL SAD PERIOD WITHIN OUR NATION’S CAPITOL AREA.

Tracie Lundy

Wow! I didn’t know this. Unbelievable and Very dangerous. I remember many years ago, hearing a guy who had severe pain in his legs and went to the railroad tracks to have the train to “cut” off his legs. He thought it would end his suffering, but it didn’t.. After surgeries and healing, he Still felt the pain. I knew then this was a Horrible idea, because like most RSD/CPRS people it crosses our mind to just cut this limb off and all is well. I haven’t looked up any images because I learned years ago to not to, better for your health when you don’t keep reading/watching everything RSD/CPRS. Get your information when first diagnosis and leave it alone. Work on getting yourself back to health. Now every so many years I might look up to see what is new out there as far as help/cure but that is it.
Thanks for the article. I didn’t know about your blog, looks like alot of great information.
Many prayers to all that is suffering.

Lauren Gilbert

I don’t pretend to know the pain that CRPS patients deal with. I am a chronic pain patient but CRPS is not one of my problems. What I want to speak to is the issue with Google. I think you are absolutely right and have wondered when someone would ever have the nerve to speak up about the things that Google posts. I’m not sure why people are so ready to read an article in Google or get a definition from Wikipedia and don’t understand that what they’re getting is somebody else’s opinion . it may be truth it may not, but it is certainly NOT the one and only source that people should go to, or believe when they read something. I have had this issue with friends of mine for years now, and unlike you I have come to the point where I simply blow up and simply tell them please if you’re going to quote something to me you had better come up with something better than Google or Wikipedia as your source. I just want to thank you for speaking up about this issue. I don’t know if it’s laziness or that people just don’t know that there are far more sources for information then Google. I know it’s easy to just pick up your phone and speak to it and take whatever it gives you as an answer, but I wish that people would understand and use the many many other sources out there for information.

Anyway again I just want to thank you for bringing this issue to the forefront. Hopefully people will read this and understand not just what you’re trying to say about CRPS, but what you’re telling them about using Google as their only source of information. And yes Google does have some explaining to do, as well as some apologies that should be forthcoming from them. Thank you for all you do to try and help patients of this horrible horrible disease and to bring further understanding to them. I pray that the people who read this will understand that you were just talking about CRPS, but that you were trying to make them understand that there are more places to get information.

Tony hardy

For people to believe anything they read or what people talk about on the internet to be the truth is really ignorant, people have to ba smarter than that and not think if it’s on the internet it must be true, it makes me sad that people are this dumb. Come on people grow up and think for yourself and don’t be a mindless sheep.

Dee Dee

It’s true, there are thousands of images and information on the internet for all ailments and diseases. Just the other day I ran across an article on a Rheumatoid Arthritis page that had information about a particular ailment I suffer from that contained very outdated information. I wrote them an email and asked that they update their information with proof from NIH articles – not sure I can trust the NIH either, but what does one do otherwise? With so much information out there who do you trust? It is unfortunate that those of us with invisible illnesses have to wade through so much incorrect or damaging information to get to some semblance of truth.

Thanks for the invitation. Here’s my CRPS story.

3,decades ago an angry fellow high on cocaine and lots of alcohol got pushed out of a yuppie bar for misbehaving. He jumped in his car and raced to another bar, trying to score more booze. He was in such a hurry that he ran a red traffic signal and crossed a six-lane divided highway that had the green signal. He met me in Lane 5 and we went crubch. I saw him and lifted my right leg off the gas pedal and was reaching for the brake pedall when we hit. The impact rammed my shin bone into the steering column while my head banged the window. For the next couple of weeks I mostly noticed the brain concussion. But there was this annoying numb spot on my shin with a lump under it, a hematoma about half an inch across

The lump went away.

The numb spot got bigger, moved down my leg toward my ankle, and began turning brown. It’s now almost 5 inches across and it’s scaly. My doctor diagnosed it as CRPS.

My numb spot does not hurt at all. It is completely numb to the touch.

There are many variations to this poorly understood disease. Not everyone who has it, even knows what it is. Some may fear that it is a cancer and begin thinking about amputation for fear of that. In my case, every time I board an aircraft I am frisked, because the thermal image shows this lump under my pants that might be a weapon. Nope; CRPS with swelling.

Annoying but not painful for me. I wish other CRPS patients were as fortunate as I am. I read the horror stories too.

No two patients are exactly alike. Sitting in front of a keyboard thousands of miles away, I have zero knowledge of what some other CRPS patient is experiencing. Treatment must be individualized to fit the patient. And research needs to be done, to find a way to reverse the disease.

Deniss

Where are you finding these abhorrent articles? Thank you!

Joe.lane3

The truth only harms those things built on lies.

Gail Honadle

I was recently diagnosed with Type 2 Diabetes, by my Endo who has been treating my Hypothyroidism. First drug out of his mouth was Metfrormin, which the FDA issued Chinese made generic with Caner warning. I FLAT said NO. Cost of most of the Type 2 meds is around $450 to over $500 for 30 days. So he chose Januvia. Type 1 are screaming about insulin the drugs for type 2 are pricey too. He should have known interfering with Synthroid is a side effect.

Adhesive Arachnoiditis is one of the most painful disease known to man known as the Devil’s Disease. Dr. Forest Tennant has written extensively on it. CRPS patients might want to look at his work as it could apply to them to. Most don’t get past stage 2 with out committing Suicide due to the pain. To address the Amputations issue, CRPS is not the only issue that makes one want the painful limb removed. People who blow the Meniscus ligament tear in the knee wish the limb was gone too Niece has blown her’s 3 times. It is now see through paper thin her Ortho says no more surgeries, so the leg at the knee would have to come off. Phantom pain is a large issues in amputations. Any time you remove a limb you leave behind Nerve damage that causes pain.

Heather

Hi,
I have CRPS & 11 other diagnoses. I get swelling, discoloration & nail problems at times. The constant pain burning etc, my sons joking call me “hulk smurf” bc of swelling & blue, when red they just call me something else. So I can relate to some of the horrific images, not all & definitely not all the time. I don’t understand amputation for CRPS. Don’t get me wrong, I’ve asked my husband to decapitate me, remove my spine, cut off every limb, all of which he refuses. When bc dive talked to doctors though they all said amputation is not the answer, most CRPS amputees still feel the pain, and ghost pain is excruciating. So I do which google was more accurate. But with all the misinformation on the internet I’d like to think people learn to look at reputable sites, and references, but I know that’s wishful thinking

Cathy. Isenberd

Very well written. Couldnt have said it myself. I have had RSD/CRPS for 34 years and yes have thought of cutting off an arm or leg but never would do it. I wish more people understood this condition

Cary Cassell

I agree with your thinking and totally understand your point. Seems to me most illness has a degree of complexity and interaction with other body parts and function some much more complex than others. I have to admire the doctors who can communicate these complexities in plain English to the average patient effectively because so many simply cannot. Dr. Google unfortunately is one who often can’t.