Central abdominal pain syndrome (CAPS) or Hernia?

Posted by invisiblepain2 @invisiblepain2, Jul 21 9:55am

Hi Everyone!

I have had severe, constant (24/7) abdominal pain with tightness and tenderness around my belly button and on both sides of my abdomen since developing food poisoning 12 days earlier. I also have constipation, and eating larger meals sometimes causes additional pain above my belly button. Sitting, bending, sneezing, and most movements worsen the pain. I have a 1.5 cm fat-containing umbilical hernia with incarcerated fat, but I’m unsure whether it was present when my symptoms began. Could this hernia be causing the constant severe pain and tenderness extending up to 10 cm around my belly button, or is it more likely due to a combination of centrally mediated abdominal pain syndrome (CAPS) and IBS?

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christine5 | @christine5 | Jul 21 10:07am

I hope you get the answers you need.
Prayers to you. God Bless

invisiblepain2 | @invisiblepain2 | Jul 21 10:09am

In reply to @christine5 "I hope you get the answers you need. Prayers to you. God Bless" + (show)

@christine5

Thank you so much. I hope so too because it has been almost 4 years now.

gently | @gently | Jul 21 12:47pm

invisible pain, you might have that hernia surgically repaired. Then you could rule it out as a cause of pain or find relief. Five years is too long to be in pain.

invisiblepain2 | @invisiblepain2 | Jul 21 1:24pm

In reply to @gently "invisible pain, you might have that hernia surgically repaired. Then you could rule it out as..." + (show)

@gently

I have seen so many surgeons some say it is the cause of the pain and some say otherwise due to severity and how widespread the pain is since there’s only fat inside the umbilical hernia but it’s incarcerated. I’m wondering if it’s central abdominal pain syndrome. Are you familiar with it?

gently | @gently | Jul 21 2:29pm

invisiblepain2, my little understanding of CAPS is that it is an autonomic disorder. As such it could be treated by an injection called a stellate ganglion block, which is said to reset the autonomic nervous system. I think it more likely to be the incarcerated umbilical hernia. Trapped hernias don't have blood supply and that eventually causes cell death. If yours is incarcerated you need surgery whether it is the cause of pain or not the cause of pain. I'm afraid that the increasing pain is a warning. Hernia surgeries are so common that surgeons become quite adept at removing them. Some 65% of cases of umbilical hernias eventually need surgery.
I've no medical background and am not in a position to outguess your physicians, but I'm with the surgeon.

invisiblepain2 | @invisiblepain2 | Jul 21 3:22pm

In reply to @gently "invisiblepain2, my little understanding of CAPS is that it is an autonomic disorder. As such it..." + (show)

@gently

I actually did a splanchnic nerve block, which didn’t help much since CAPS is due to central sensitization and nerve blocks are not effective on that. I’ve been having this 24/7 pain for 4 years no in addition to this feeling of tightness and fullness and other GI issues. Not sure if the hernia was there from the jump start but only three things stop my pain while using them. Ketamine, TENS and cold water. How could a small hernia cause a widespread and debilitating pain?

gently | @gently | Jul 21 4:27pm

The tiniest problem in a muscle wall can cause widespread pain. I wouldn't expect a splanchnic nerve block to help central abdominal pain. Celiac plexus nerve block?

invisiblepain2 | @invisiblepain2 | Jul 21 5:22pm

Yes it’s like celiac nerve block or maybe it was. I guess it wasn’t strong enough to mitigate the pain. I also did Tap block for the abdominal wall but that didn’t work either. If the hernia is the source of the pain wasn’t tap block supposed to work?

marcd2k | @marcd2k | Jul 22 1:37pm

@invisiblepain2 Good afternoon, this is to invisiblepain, as well as anyone who can identify what we have going on in our bodies.

I am a 63-year-old male that has had chronic right flank and oblique muscle cramping that causes a lot of pain when sitting or standing. These muscles are locked from when I get up, until I go to bed. Laying on my back is the only way I get relief. This has been going on since July 7, 2023, the date of my first ER visit for the pain.

Over the past 3 years I have been to 5 hospitals, I have seen more than 30 doctors/medical professionals. After imaging and blood tests were done multiple times, every person I've seen tells me I'm not a textbook case, or that I'm an anomaly. That is why I've seen so many providers, everyone gives up, anywhere from the first visit to the 6th visit (physical therapists give up after 6 visits when no improvement is noted). So, I keep moving forward, I keep reading and watching videos, and I have written to numerous medical professionals around the world trying to find someone that has heard of this, or that has had this, so they can start an effective treatment.

The reason I'm commenting here is because of the abdominal pain, and the umbilical hernia that invisiblepain mentioned in his post. I have had multiple x-rays, ultrasounds, CT scans, and MRIs done over the past 3 years. Something that came up on a CT scan of my abdomen and pelvis was in the EXTRA ABDOMINAL SOFT TISSUES category in the scan report. The report states there is a Small Fat-Containing Umbilical Hernia present. This was after the ER doctor told me everything was normal in my CT scan. No infection, no fluid build -up, no mass, and NO HERNIAS were found. Then I read the CT scan report the next day and saw there is a hernia, so why would a doctor tell me there wasn't one?

When looking at my naval (belly button), there is a noticeable lump in the opening of my naval. However, there is no pain in that area of my abdomen. My pain is in the right-side only, and it goes from the oblique muscles around to the flank muscles. Those muscles will not release no matter what treatment or procedure I have done. Chiropractic, Acupuncture, Physical Therapy, Epidurals, Nerve Blocks, Trigger Point Injections, Dysport (a version of Botox) injections.

I have been wondering if every umbilical hernia has to have surgery done, or, with this being on the outside of my abdomen, it would not be required. Any experience and advice/suggestions will be greatly appreciated.

Thank you for reading this far, sorry, this was longer than I expected.