← Return to CRPS of the stomach or abdomen


CRPS of the stomach or abdomen

Chronic Pain | Last Active: Jan 17 10:11am | Replies (12)

Comment receiving replies

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.

Jump to this post

Replies to "In 1979, I woke up from my 3rd back surgery with a very swollen red foot..."

I am 69, also. After a patellectomy in 1973 due to osteomyelitis, I was diagnosed with causalgia. (The kneecap dislocated a dozen times daily since age 9). Since then, after all injuries or surgeries, I develop CRPS in new places. I, too, have had decades of using crutches. After the vaccine, I developed osteomyelitis in my spine (and a host of other side effects) and cauda equina syndrome leading to spinal surgery. I developed CRPS in my lower bowels (self-diagnosed) and left foot, doctor-diagnosed as CRPS. Most of my current doctors know nothing about CRPS, including my gastro and rheumatologist. Most doctors deny I can have CRPS anywhere but a leg or arm. (I now have diverticulosis, but new directives say that no change to diet is necessary.) I need to figure out how to get my bowels past the surgery area on my left lower abdomen. I do not take anything other than diclofenac for pain because constipation is more painful than the other locations of CRPS. (I do have SCN9A mutations and I wonder if that is related.) I look pregnant even though I am 130 pounds. Interestingly, I have long covid requiring asthma medications. I get covid several times a year. Thankfully, the heart issues resolve (just in time for another round).

Wow! I am so sorry to hear of familiar stories. Sorry anyone is suffering too. I am in horrible distress with discomfort and no sleep since 2019 with abdominal problems and motility/defecation problems after hypylori. The the Drs. (8 Gastros) one finally listened and I had adhesions causing a blockage and I had an appendectomy. I had endometriosis and the Drs. refused to believe I had adhesions. I lost 30 lbs. and my body is still screwed up because I can’t keep consistent weight. I have never been the same since this happened in 2019 with my colon. I also learned I have a redundant and torturous colon (haustras missing) and pelvic floor dysfunction. Colon preps do not clean me out. I also have CRPS from 2003 right foot injuries. I have mentioned the diagnosis to all Drs. but they act like they don’t hear you. I am going to Rochester soon and pray they can help me find some peace. I have recently figured out my pulse is way to low and I have an arrhythmia too. Anyone else with similar problems able to get help at the Mayo? It has been eye opening to read these posts and realize your not alone.