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CRPS & GI – Frustrations From a Nurse’s Perspective

Published on December 13, 2016 under Guest Blogger for RSDSA

Nurse Beth's stomach while CRPS and GI issues were flaring. 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.

Nurse Beth's feet, which are normally affected by CRPS. She discusses the possible correlation between CRPS and GI issues

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:

  1. An In-depth Look at CRPS: From Diagnosis to Treatment as Illustrated by Case Histories
  2. 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.

22 Comments

  1. Connie

    God bless and touch all of you! I was diagnosed with RSD upper extremities around 92 after I sprained my wrist at work in 1991, in probably 1994 diagnosed in the lower extremities . I have never been out of pain since, but God has seen me through! I also have CTS, fibromyalgia, tendinitis. After reading this article I wonder if my ischemic colitis that I was hospitalized with in 2004 was due to RSD/CRPS or caused from all the meds and multiple 100+ pin point cortisone injections I have had. Lately my quality of life have drastically went done hill! I feel like my body is deteriorating! My knees are bone on bone, bone Spurs on my hands and feet, swelling everywhere, can’t lose weight, teeth issues, chronic cough,heightened sense of smell and sounds, itch, eyesight seem to change all the time, brain fog, the drs say I have an autoimmune disorder that’s causing the severe inflammation, but can’t find out what it is. They say my bone Spurs and erosion in the pip and dip joints which doesn’t make since to them, if it was osteoarthritis or rheumatoid arthritis that it wouldn’t be that far up, I have little red spots on legs and trunk, headaches, tinnitus and the list seems to goes on and on. Do you think this is all due to the RSD/CRPS? They are putting me on Methotrexate for the inflammatory disorder (that no blood tests shows it) I’m not a fan of going on the “chemo” drug. If you know of anything or anyone who could possibly give me some answers PLEASE let me know! Thank you!

  2. Melinda Malloy

    Hi! I have had CRPS for 7 years now, and I am wondering if it has spread to my GI system. The doctors I have been to so far do not believe it spreads to internal organs, so I have not found help yet. I have had Gastroparesis and extremely severe GERD for years, and almost starved to death at one point because those got so bad. The severe GERD recently got worse this year and I ended up in the ER several times because I could not take in food. On good days I am limited to 2 foods that I can eat, and even that causes GERD sometimes as well. I am trying to find a doctor who can help advise me on these issues, and I would appreciate any help y’all could give! Thank you!

  3. Amy

    I was diagnosed this year after having foot surgery removing a large neuroma, removing a bone, inserting a screw & removing the nerve where the neuroma was. This was in February. I have never recovered & it developed CRPS! I never knew the condition existed! Excruciating pain that I have never experienced! I’m a 53 yr old kindergarten teacher! Imagine that not being able to walk! I finished the school year in a wheelchair. I am having spinal cord stimulator installed next week!!
    Does anyone know a specific doctor near Birmingham, Al? Every neurologist, rheumatologist, other doctors I call say they don’t treat CRPS & use a pain specialist. I DO use one & he’s the one doing the stimulator! He’s been great helping all he can. But I need a Dr treating all the other issues! Any help/advice would be appreciated! I’m fairly new to all this but it’s real & 100% CRPS!! I need to continue to teach! Love reading everyone’s stories!

  4. Ellen

    Hello, I am also a nurse. I was diagnosed with CRPS in 2011 after a pit bull attack and fractured foot. I was bitten in both upper extremities and both legs. Originally, CRPS was in the right hip and leg but progressed despite early treatment multiple stellate ganglion blocks, physical therapy, and a medically acquired narcotic addiction. CRPS spread to all four extremities. On full disability, I decided to stop all narcotics, realign nutritionally and lost 70 pounds. Pain control is now through oral steroids, high doses of magnesium, Arthritis Strength Tylenol, Aleve, and yoga. I began setting goals again and began training for a triathlon (which I really thought was unrealistic). Even when pain was unbearable, I continued running, swimming, and cycling. Mental health improved and I developed a tremendous support system that did not know I had CRPS. I thought I was in remission. As long as I kept moving, the pain was managed. While in “remission”, I developed high blood pressure that my primary care ignored, then chronic kidney disease, also ignored by the primary care and by a nephrologist. Neither condition was addressed or considered possibly related to CRPS. Next, severe reflux, urinary incontinence, occasional bowel incontinence, severe abdominal distention, abdominal pain. difficulty swallowing, uncontrollable flatulence, belching, and increasing difficulty sleeping all gradually worsened. I had the second shingles injection in September 2020 and developed severe pain in my hip consistent with the active CRPS in 2011. My primary care attributed all the symptoms to depression and anxiety. My toenails began to thicken, crack, develop fungus, became chronically ingrown and infected. My shoes were professionally fitted. I was referred to a podiatrist and diagnosed with CRPS related degeneration of the toenails and feet. My feet looked like pictures of COVID-19 toes (no exposure to the virus) and showed discoloration and sings of decreased circulation. Per the podiatrist, all of the symptoms I have been experiencing are related to systemic CRPS. I feel so blessed because the podiatrist knows CRPS and had studied under Schwartzman. I started vitamin C 1000 mg per day pre and postoperatively a month before surgery was scheduled for the toenails. In April 2021, I underwent bilateral bilateral matrixectomies under heavy sedation and regional blocks with minimal tourniquet time. Afterwards, I was told my nails on the right shattered due to the CRPS and 4 weeks later detached completely. The podiatrist put me off work with feet up for 6 weeks because of the high risk of exacerbation. I am noticing much more discoloration, allodynia, loss of balance and of course pain. I am grateful for the podiatrist’s in depth knowledge of CRPS and ongoing treatment. I have done a lot of research on the disease and issues and read through the postings. He and his team have taken the utmost caution with my care and I have found a new primary care that is knowledgeable about CRPS. At this time, I consider myself as doing well but feel like I am walking on eggshells. This is not a simple pain management game and I wish each of you the best because CRPS is for life and each of us has to determine what works, what doesn’t, and what we can live with. By the way, a few years ago, I fell, twisted my ankle and had to go to the ER in extreme pain and for X-rays. I told them I had CRPS. The ER physician and nurses accused me of drug seeking and refused any pain management! With an increased focus on opioid addictions and prescribed opioid use, doctors have become more hesitant to prescribe the medications needed by CRPS patients and many physicians are now refusing to prescribe the medications, even when contracts are in place. Has this negatively affected anyone?

  5. Jacque Rumple

    Hi Linda.
    It is such a delight to tell my story to people who understand my journey
    I was finally diagnosed by a neurologist about two years ago, but have been suffering with this horrible disease for several years. I attribute my symptoms to a blood patch back in 2010 which left me totally paralyzed for about three weeks from the neck down

    The pain (which began in my left leg) was excruciating and my leg began to feel like someone had me plugged into an electrical outlet not to mention the discomfort from my freezing limb

    Fast forward ten years (filled with doctors and family acting like I was ready for a pity party) and I am facing a very difficult decision. My left leg is no longer attached
    to the left hip. The socket has disappeared from my hip and I would require a hip replacement. I’m the meantime I have developed an unusual lump on my back requiring a new MRI which is scheduled for tomorrow. I was also diagnosed with a large mass on my right ovary which I will be seeing a new ob/gyn next month. I became very quiet about my own pain and the suffering I went through and did my own research. I felt a very strong kinship to the individuals who posted pictures of their legs and feet’s

    I have been wheel chair bound for about three years and of course any potential outcome would require surgery to “fix” my growing pain. And also of course most doctors I am working with (with the exception of my neurologist) need to be educated

    Does anyone have the experiences with surgery and it’s potential to increase pain associated with our crps to help guide me through this maze?

    Crps is not just a painful disease, but also a lonely fight. I have so many additional side effects it would take me three more pages
    to describe but I will close with a heartfelt thank you and good night!

    Jacque

  6. Regina Koeppel

    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

    1. Debra Lee

      I was diagnosed with CRPS after shoulder surgery.
      My husband took me to Italy to have treatment with Professer Malavota in Bologna and it saved my life!
      It has been 3 years now in remission and I am scheduled for colonoscopy on Thursday and I am worried that will make it come back…
      The last thing she said was do not have any elective surgery or break any limbs if you can help it….does that mean do not get put to sleep or do not get cut on? I am very worried about this as that pain I had after rotater cuff surgery was so much worse in my hand than where they actually cut me.
      I was on morphine when I went to Italy for treatment ( not available in USA) and after 3 weeks of treatment and home just a week I no longer needed any morphine.
      If anyone has any info it would be greatly appreciated. Thank you.

  7. Jason

    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.

  8. Cathy Clarkson

    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?

  9. Sarolly

    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.

  10. Jackie Holst

    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?

  11. Carolyn

    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

  12. Nancy

    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?

  13. Linda

    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.

    1. Carolyn

      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

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