CRPS & GI – Frustrations From a Nurse’s Perspective
Written by Guest Blogger Beth Seickel, RN, BSN
CRPS and GI issues may have some correlation. Our own Nurse Beth details her perspective on this issue as both a person living with chronic pain and as a nurse.
How can we prepare ourselves for hospitals? How can we educate the staff? As we educate the world around us, here is her story:
The frustration of living with CRPS spills over into everyday life we would all agree. Yet, speaking as a CRPS patient and Nurse, I have gained a unique point of view both as the health professional and now as the patient. Yet, my vulnerability as a patient was tested from an ER visit for acute abdominal pain and CRPS flares of my GI/colon.
There isn’t a ton of documentation on CRPS in the GI system, including the colon. But that doesn’t mean CRPS isn’t an issue there. CRPS can spread to ALL aspects of the body, including our internal organs. Bladder dysfunction, bowel dysfunction and abdominal pain can be affected according to the April 2014 online health chat with Dr. Michael Stanton Hicks, board certified physician in pain management and anesthesiology at Cleveland Pain Management and Center for Neurological Restoration.
Additionally, an article written by Dr. Robert Schwartzman, “Systemic Complications of CRPS”, Neuroscience & Medicine, 2012; documents spread to “internal organs” including GI. Information referenced by Dr. Eamonn Quigley and Ronald Pfeiffer links gastrointestinal dysfunction in patients with neurological disease. “Neuro-Gastroenterology” published by Elsevier Health Sciences explains the “brain-gut connection”.
Why, then, is it such a struggle to connect the dots? Can’t tell you how many medical professionals have said: “I don’t know what CRPS or RSD is, but it can’t possibly be related to your GI system/colon.” If you say you do not know what CRPS/RSD is, how can you then make such a statement?
You would think as an RN I wouldn’t be faced with this. But even though I was prepared (having my CRPS card and ER/Hospital Protocol from RSDSA, along with a list of medications, medical history and doctors in my wallet at ALL times), I still faced added stress of some staff NOT understanding or interested in knowing about CRPS.
Imagine this: I am laying on an ER stretcher, moaning in pain, holding my discolored “burning belly”, with my multi colored feet handing out of sheets, vulnerable, and overwhelmed trying to figure out how to just get relief when a hospital staff doc pays a 5 minute visit to my bedside spurting out what he is going to do while I, the patient and nurse, try to explain what CRPS is by handing him the CRPS card from RSDSA. My hope: this will communicate what I can’t speak right now. Instead I only get the “nod” of an uninterested medical professional putting the card back down without even looking at it, which causes me to feel MORE vulnerable, disrespected and in MORE pain. Rather than open his mind to what he doesn’t know, he said I had “constipation” rather than assess the mottled & burning belly as “livideo reticularis,” gastroparesis, Dysmotility, pseudo-obstruction form my CRPS insisting my feet, which are hanging over the side uncovered, be covered.
So what’s a patient to do? Well I can share with you the positive side. Many nurses, physicians, and staff were thrilled to have the card and ER/Hospital protocol to read and pass on to the next shift. SO validating as a CRPS patient! But being prepared isn’t always enough.
We need to continue to advocate for ourselves and others facing this condition. More importantly, we need to help “our care givers” to have the terminology to advocate for us when we can’t. Further education, protocols and advocacy must be given to hospital staff to expedite care. Contacting our local legislators to share our stories will enable future legislation to protect CRPS patients both in and out of a hospital setting. You might think your voice won’t make a difference. But I’m here to say “Yes it can!” Don’t wait, do it now. The more conversation we have the easier it will be. Together we are HELPING each other! Your voice, my voice, and RSDSA voice together WILL make the difference.
Thankfully, my GI and CRPS doctors are a constant source of support. When I call saying the abdominal pain is beyond my limit, they know where I am coming from. Their advocacy has sustained me over the past 10 years. Initiating treatment, including IV fluids, Zofran, PCA pump, LDN (low dose naltrexone) for the intestinal pseudo-obstruction/colonic inertia/Dysmotility/nausea has decreased my need to go to ER but I do need others, even my colleagues, to gain a better understanding of CRPS. Let’s begin by sharing the 2 FREE online CRPS courses for ALL medical professionals, courtesy of RSDSA:
- An In-depth Look at CRPS: From Diagnosis to Treatment as Illustrated by Case Histories
- A Comprehensive Overview of Complex Regional Pain Syndrome
It is my goal [that] ALL health professionals will receive expanded training on “chronic pain,” including the complexities facing those living with the challenge of CRPS.
14 Comments
Leave a Reply
This site uses Akismet to reduce spam. Learn how your comment data is processed.
I too am a nurse with CRPS
I was a Emergency Nurse Specialist at UMDNJ ER for 20 years where I saved thousands of lives and taught hundreds and hundreds of doctors and nurses Emergency Medicine
On 9/11 I was a Certified Adult Pediatric Neonatal Trauma Critical Care Medivac Flight Nurse Westchester Medical Center in NY
8 years ago after struggling with debilitating deadly depression and anxiety I was to return to work as the Director of Case Management of Newark Beth ER. Then I feel
After minor knee surgery to repair a torn meniscus I started to develop pain that was massively worse than the injury or surgery
Tricounty orthopedics screed this one up and did a total knee in response. The pain only worsened. I went in at least once a week complaining of excruciating pain and physical therapist couldn’t even touch it.
They finally referred me to their pain management. I could pop 4 Vicodin without relief
I told this doctor that I had no quality of life.
Then Dilaudid. Finally relief. I was suicidal the pain was so excruciating. When 8mg of Dilaudid every hours worked I switched to Dr Hartspand Hackensack NJ.
Immediately he told me ‘I think you have CRPS’
I had no idea what it was. Unfortunately my complaints went unheeded and my knee was so severely contracted I had to have a 2knee replacement.
Now years later it spread to my bladder. That CRPS is now Interstitial Cystitis but I also have pelvic floor dysfunction and a prolapsed Uterus since 2018. I AM EXHAUSTED!!
Today I made a call to my old pain management
I’m in gabapentin that can be increased but I need a cure pain management
Hi all,
I was diagnosed with CRPS in 2017 and after 10 months of trying all sorts of treatments, I gave in to surgery with the spinal cord stimulator. That has helped tremendously. Fast forward to early 2020 and I began developing severe acid reflux and GI issues. I’m in constant pain. Went to GI who told me that I have a very small hiatal hernia and polyp on the gallbladder that shouldn’t be causing any pain at all. So my CRPS doctor is thinking that CRPS is back to affecting my sympathetic nervous system. I’m so scared that I may have to live with this severe acid reflux for the rest of my life. I cut out alcohol, caffeine, high fat foods, fried foods…still the pain is here. I see my CRPS doctor this coming week. I hope he has a way to help me heal so I can live pain free or mostly pain free again. I’ll share anything that helps with you guys. Please feel free to email me at Jason.s.perkins@gmail.com. Maybe we can help each other.
Fracture R Wrist Jan 30 2020.Hand and fingers swollen and shinny by cast removal date /decreased range of motion. Physio weekly has helped and I can now touch thumb to finger tips. Biggest issue is untrustworthy flatulence , abdominal pain and grumpus 1/2 to 3/4 hrs following ingestion of any food or beverage. Can not leave house due to bowels. Depressed/exhausted.Have had scopes both ways awaiting Hida scan & Ultrasound. Sick of being sick! RPN x 47 years and not a patient ..patient!Finger nail cuticles destroyed R4& R5d.Hand burning all the time. What do I ask Doctor to do for me?
Hello, Cathy. Can you please let us know which state you are in?
Wow!!! I didn’t think I’d find another RN who actually would understand me and my struggles for help because “I know how to answer the questions” I’d LOVE to connect!
I was diagnosed with crps around 23 years ago after a work injury in left arm. By the next summer my right extremity including my neck and face where affected. But it didn’t stop there I started having severe migraines , cluster headaches upper and lower back pain and the pain in my face now included my teeth making all my teeth hurt as if I needed root canals begging three dentist to pool them out . All they could say was that I didn’t even have a cavity and that the pain would continue anyway. I wish I could say it stopped there but it didn’t, now it’s also in my legs and uterus with the complication of fibromyalgia overlapping everything else. Know even if I need a minor surgery doctors tell me they feed that it can spread to my lungs. I ha be seen many doctors and specialists some more understanding than others. I have and have had all kinds of treatments including a spinal cord stimulater in place that has improved my pain considerably so I can function. I am never pain free and I struggle with stress , depression , anxiety and panic attacks that flare up my condition bringing it to a vicious cycle. If there is anything out there that could further help me I would very much appreciate it.
I have had RSD for over 20 yrs. thought things were doing a lot better but then I think it attacks my GI. I have the same problems with the same markings as you on my stomach. I have had IBS. Partial bowel obstructions. Now I was diagnose with erosion Esophagitis gastritis and small hiatal hernia. Was wondering if doing a endoscope Was without using Ketamine caused the RSD to flare. In pain most of the time … also had gallbladder out. This started one year after it was removed. Ct scan shows fat on head of pancreas… Mri shows nothing. Even started with a nutritionist with some help but not enough. Can’t handle the pain. What if any test will tel mr it is RSD?
We hope you can join our Facebook Live with Liesha Getson, a nutritionist, on Thursday, August 13th: https://rsds.insctest1.com/event/facebook-live-with-liesha-getson-thursday-august-13-at-7p-et
What is the link to Parkinson’s? My husband has both GI issues and painful feet that come back normal on all nerve and circulatory tests. Constant pain. Numbness…cold…can not tolerate sheets to touch …affects his sleep and walking
Please check your email, Carolyn!
Beth, i am an RN also. I have CRPS for 4 years. I am having gi issues and my PM doctor feels it could be nervous system attacking gi tract. My PCP does not think so. I have gi consult for egd and colonoscopy. Have not met gi doc yet. Do you have suggestions for me?
Hello, Nancy. I have passed your comment and contact information on to Nurse Beth. Sending you love.
Hi,
Thank You for this article. I was diagnosed more that 12 years ago at an early stage that put it in remission. I’m now getting a burning in the opposite leg (that I broke and was diagnosed originally) and am wondering if you have ever heard of it coming back that many years later? I have been having severe charlie horses in the leg that is now burning and I wonder if it has anything to do with it. Like you said, many doctors don’t know what it is and just turn a deaf ear when I talk about it.
Hi Linda,
I realize almost a year has passed since you posted this comment but I feel compelled to respond to your question or re occurrence after lengthy remission.
I was formally diagnosed with CRPS in 2009 but now realize that I first developed CRPS in 2004. I worked in a locked Unit of a psychiatric ward and was assaulted in 2004. After healing orthopedically, I developed CRPS symptoms down the left side of my body, consistent with the initial injury areas. This left me off work and trying to figure out what was wrong for 8 months. At 8 months, it went into spontaneous remission, still undiagnosed.
In 2008 I was involved in another traumatic incident on the Unit where I worked. This time CRPS returned with a vengeance but On the lower right side of my body. This time it essentially crippled me. My leg was 3 times it’s normal size, discoloured, extremely painful etc. I also had alodynia, hyperaglesia and other associated CRPS symptoms. This is when I was formally diagnosed. To note, I have never been able to use conventional pain and other medicine as my body is extremely sensitive to chemicals. Through various natural therapies and modifying my lifestyle I gradually improved. Then I was diagnosed with cancer in 2017. I knew I required surgery and had decided to not take chemo or radiation but to investigate alternative methods to heal my body and improve my immune function, rather than destroy it. I began a whole food plant based lifestyle, incorporating treatments such as High dose vitamin C, Cannabis oil suppositories, coffee enemas, juicing etc. I was terrified of the upcoming surgery as I knew my odds of nerve damage were great already having CRPS. Fortunately, losing 50 lbs and getting my body healthy did wonders for my CRPS symptoms. They were virtually non existent but for the Neuro rashes and skin colour changes. All the high dose vitamin C must have saved my nervous system before and after surgery. I suffered no ill effects and eliminated my cancer entirely. I felt great for the first time in years. This lasted almost 2 years. Then I essentially let my guard down and virtually forgot how prone I am to recurrence. I had my mercury amalgam fillings removed and replaced with composite. The dentist accidentally caused a fine crack in my tooth leading to my root. A year later I am forced to have the molar extracted. No precautions were taken to protect my nervous system reaction and it all went downhill from there. When extracted I ended up with a bacterial infection that traveled along my jaw and up into my brain. I developed insane vertigo and was blinded in my right eye. i also had a blister pop up on the left side of the back of my mouth and daily headaches. After a trip to the ER and subsequent antibiotics, I was cleared of the infection but left with the residual ghost pain of the infection. I also developed a sinus infection and was ill for another month. Now I have healed from all the infections but am left with left side CRPS in my head, jaw, stomach, hand and toes. I have developed itchy skin with no rash which I have learned can be like the pain response but itchy instead. I have gastroparesis and intestinal dysmotility which is what brought me to this article. So I have discovered that I can indeed experience remission but the monster is always lurking in the background just waiting to be released. Gentle hugs