CRPS of the stomach or abdomen

I do not know what the letters CRPS stand for, but I am very familiar with the type of attacks your daughter is having. I havehad eight attacks so far, abd I have been diagnosed with residual gallstones. I had my gallbladder removed March 2017 and had my first “attack” September of this year. Felt likea gallbladder attack (INTENSE pain, nausea, vomiting, pain up my right shoulder, etc. I had never heard of residual gallstones, but they exist. I am getting ready to have a procedure where the surgeon will remove mine. I pray I have no more attacks before then.

but are they able to see the residual gallstones and where are they because I am pretty certain she has had numerous ultrasounds and a scope down her throat xrays every test and they haven't found anything, Please tell me how were they able to see them and find them and where are they located, because your pain sounds the same as hers. and thank you for the reply

Joseywales, I will have more info for you after a “special” MRI they are doing Tuesday. What I can tell you is that they did an upper GI to rule out some other potential causes of my pain. I believe the diagnosis is at least partly based on my symptoms: i kept telling the 911 responders that the pain felt EXACTLY like a gallbladder attack, complete with pain up the right shoulder, nausea, band of steel around my middle, non-relenting pain, etc. The digestive specialist I saw says he is sure it is residual gallstones that can be removed via an endoscopic procedure, even if the stones are lodged in the duct from my liver. To answer your question, they hope to see the stones via this special type of MRI. Please give your daughter my very best wishes, and stay strong.

please let me know after tues and thank you

I will update you as soon as I know the results of the test. Stay strong.

unfortunately my daughter was rushed to the hospital at 4am this morning in excruciating abdominal pain no one knows why no one knows what is going on 3 of her doctors have given up because they do not know what is going on this is approximately the 13th time in a calendar year she has been in for pain management just to make her feel better but in no way do they try to figure out what is happening with her, so if you found anything out please update me, more than likely the cases are not related but at this point I will listen to anything, thank you

My doctor’s office called today with a report on my MRI done earlier this week. The MRI showed NO abnormality. Nothing. And even more surprising to me is that the doctor wants to wait six weeks to see me. Very frustrating. The attacks continue and seem to come out of nowhere. Do not appear to be related to eating or not eating, activity or no activity. So I continue to take two pantoprazole 40 mg pills per day, take three or four Tums at the first hint of indigestion (usually not close to meal times), drink a little Diet Coke or other carbonated drink to help me burp up some gas, and hang on to my body while I moan in pain. I try very hard to stay out of ER ($150 copay each time), and my doctor said to NOT take pain medication during an attack. I find once I am nauseous, I soon begin to notice less pain.

I had so hoped to have more information for both myself and your daughter. My last attack about three weeks ago was the longest and the most painful. Wondering if I passed a gallstone? Impossible to know. I am so very sorry I could not help you and your poor daughter. I do empathize with her: the brutal pain, the not knowing what is going on, and the waiting for the next attack. God bless. Please keep me posted, and I will certainly contact you if I learn anything new. I now feel my doctor is clueless and just waiting to see what happens.... Stay strong.

@joseywales Im so sorry to hear this There are so many things it can be even radiating from someplace else ,her head ,her back ,appendix are you close to a Mayo Clinic or any of there sattelites? Im sorry I dont have anything else In my case I had years ago pain in my stomach /chest area Im a big believer in chiropractic treatment ,so I went to mine, at the time he adjusted my back as it was it turned out to be a nerve that was pinched in that stomach nerve as soon as he released it ,my pain left this is my story of abd .pain

CRPS stands for Complex Regional Pain Syndrome. Used to be called RSD, Causalgia and many other names. It is an orphan disease, now seen as probably autoimmune, no known cure and is known by some, even medical professionals, as "the suicide disease."

For those of us who suffer with it, it is mostly long term, sometimes, like for me, your entire life. It will start in one area after a trauma, can be as small as a needle stick and is known as the most painful chronic pain disease one can have. In this case, that the daughter lives with this excruciating condition, that can spread to other body parts, is very pertinent, esp now that they are realizing it spreads/can spread to even internal organs. His question relating it to a CRPS spread is important to the question.

Please read about CRPS. Not enough people even know it exists however any of us can end up in this enormous amount of uncuracle, untreatable pain just having your blood drawn. Being in a cast. Stubbing your toe. You can have known nerve damage or not. Type 1 or type 2.

The more people who know it exists, and understand the early symptoms, the more it can potentially enter remission or even go away when caught early. Thanks to you and for all who spend a bit of time understanding this life-stealing disorder. Its very pertinent to the question. Thanks.

In 1979, I woke up from my 3rd back surgery with a very swollen red foot that was on fire. I was diagnised the next day with "causalgia." I was 24 and I was told by my surgeon "you will never walk again and would probably spend the rest of my life on crutches or eventually a wheelchair and live with excrutiating pain the rest of my life. That was it. He turned and left the room.

As the pajn was relentless, I eventually accepted his life-ending diagnosis and spent the next several decades on crutches, occasionally a wheelchair, in constant pain. And that was that.

I never did more research. I didn't even know it was now known as CRPS. I had never heard of ketamine tho it was too late for me eventually after a fall, it spread to my right foot and after Covid with extreme inflammation, it spread to from the hips down. I had IBS since the 80s. I developed diverticulitis in the last 8+ years and went to a gastro. On the questionaire was a totally separate question asking if I had CRPS. I was shocked! Still too ma.y doctors have never heard of it never mind a gastro making a special point of asking!

He told me he did.t thjnk I ever had IBS but rather CRPS of the colon. Since covid, where it attacked my stomach more than my lungs (people don't know that can happen) I have been diagnosed with CRPS of my larnyx and rib cage, as well as long covid. Please read about cytokine/bradycines. In both both CRPS and covid, they go thru the roof sometimes causing the kind of inflammatory response in peoples lungs that they die. (Cytokine storm.)

You can have a blood level done to check her cytokine levels normally than during an abdominal attack. It would be interesting, and telling, if the level jumps way up.

Unfortunately an ER may thing you are nuts but a rheumatologist may not. It may seen silly to go to a rheumatologist for stomach pain but when it comes to autoimmune pain disorders (think RA) that might be the next place to seek help. If you see a gastro, make sure they are well informed a CRPS organ spread. This disease affects the entire family. Thank you for trying to connect the dots on behalf of your daughter. My family never bothered to understand esp once the depression of never ending pain took over. Once given a psych diagnosis of "depression," nothing else is seen or matters anymore. It's already hard enough to think that somebody could be in that extreme pain 24/7 for decades on end. I has to be all in our head. How could belly pain be related to shoulder surgery? It can. Seek out peolle who know, and sometimes have ever even heard of this disease. It is now known it van spread to the heart. This was never known as a potentially fatal illness before. Untreatable inflammation of the heart feels pretty life ending to me. I am 69. 45 years with CRPS. My best.