Avatar universal

What could be causing my chronic abdominal pain that has lasted over three years?


I am 36/m. I have been suffering from right sided abdominal pain for over three years now. Please bear with me, as it's a long story!

The nature of the pain:
Oddly enough, this all seems to have began with pain and spasms/twitching off the right side of my spine in my back somewhat above my tailbone, about three years ago. This went on for about six-eight months. Because I had an incident of microscopic hematuria around the same time, I had a KUB ultrasound done which showed nothing of concern.

Shortly after, I began feeling pain in the RLQ in the front of my abdomen, and the location was in the right place for my doctor to suspect my appendix or colon (my mother suffered from stage 4 colon cancer). I was referred to a general surgeon who completed more ultrasounds, and MRI, an abdominal CT scan, and a colonoscopy. The only finding from these tests was some inflammation in my hip.

Roughly a year later, I began feeling pain higher, just below my bottom rib on the right side. This pain has developed over the last few years to be quite significant. The pain led me to find a lump, which we excised and turned out to be an angiolipoma. I had this removed a year ago but the incision site still causes significant pain. However, the pain is not localized to the incision point (which is about 2-3 cm off the median) but tracks to the right, around the bottom of the rib, and is quite severe.

I was referred for an endoscopy and HIDA scan. The HIDA showed a marginally slow ejection rate (20% or so), and the endoscopy showed some eosinophilic esophagitis which my dr suggested was caused by an unknown food intolerance.

I also suffer from flank pain and significant pain along the right side of my spine, at roughly the same level that I feel the pain in the front.

I should note, if I have my wife run her fingernails gently over the affected area, my nerves light up like a Christmas tree all around the area, but I do not get this sensation when she does so on the unaffected side. Deep palpation does not activate this pain but gentle touch seems to have a great effect. Even a drop of water in the shower landing on my belly can cause an incredible sensation.

I have also experienced numbness in my right leg and foot, supported by a nerve conduction study.

I have received one injection of lidocaine as an attempted nerve block, but this was done without ultrasound guidance and had no effect beyond a large black bruise.

This pain:
Is constant, never ending. Began in a small area, but now encompasses most of the right side of my entire abdomen. Does not seem to be affected by food intake or defecation, and does not seem to have an effect on the functioning of my bowels or digestion. Is only loosely connected with position - no movement really makes it hurt acutely, but it can be aggravated by my sleeping position, for example. Is sometimes itchy. Is always right-sided. Is more manageable for weeks on end, and then worse for weeks on end, but it always present. Seems to respond somewhat well to exercise. Front and back. Has a great effect and correlation with my mood.

I've had:
7 rounds of ultrasound /
5 sets of x-rays on my abdomen and hips /
2 abdominal CT scans with contrast /
One MRI /
Colonoscopy /
Endoscopy /
HIDA scan /
Cystoscopy /
Tons of blood work, including a specialized test for carcinoid syndrome.....

None of these showed any meaningful results.

It is beyond me how I can live every day in absolute agony but no one can even begin to suggest, over three years, what the cause may be. I feel like I've met every specialist in my county, at this point.

I do have some theories as to what could be causing this pain:

I operated a Crown reach truck (https://www.crown.com/content/dam/crown/images/products-page/forklifts-page/reach-trucks/rr5700-operator-comfort-lean.jpg) very regularly for long periods of time before this pain began. My posture in this truck was less than stellar, and I wonder if I have pinched a nerve in my spine that supplies innervation to my abdomen. This would explain why this started in my back, and the twitching spasming sensation I felt for a few months when this all began - perhaps that sensation was a nerve being damaged or dying? There are conditions such as Anterior Cutaneous Nerve Entrapment Syndrome, or Thoracic Spinal Radiculopathy that seem capable of causing significant abdominal pain, but I'm not sure how to convince my doctor of this.

I have also experienced bouts of sulfur burps, diarrhea and nausea. I suspect this is related to the food intolerance as suggested by my endoscopy results. I have cut out dairy in the hopes of identifying that as a culprit. However, no dietary change I make seems to effect the pain at all.

Finally, I can't imagine how, but maybe even after these batteries of tests, some pathology has been missed? I understand that most visceral sources of abdominal pain are fairly easy to spot in these tests, and they don't get missed often.

So, I'm leaning towards a spinal injury causing radiculopathy and constant referred pain in my abdomen.

Any perspective on this would be greatly appreciated, as I'm sort of at my wit's end on this. I am a father to five children, and was a hard working and successful person until this happened to me. Now I struggle to complete even the basic functions of daily life, mostly as a result of dealing with constant demoralizing pain.

I will gladly answer any questions posed to me on this matter.
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Avatar universal
offhand, seems it's either more likely musculoskeletal or infection based.  When you said it's a story, I'm thinking Lyme.  I had abdominal pain so bad I was on opiates for about 5 years.  Prior the pain was at previous injury and medical implant sites, also requiring opiates.  I think now my liver was most affected, and over the course of a week, I could feel the infection spread to my heart.  Then I was in grave danger.  Here's the thing; Dr's are not looking for underlying chronic infections.  Insert long explanations here.  More people die of sepsis than aids and cancer combined.  I was lucky to survive, but there is no way to thrive until you treat the pathogen.  Millions of people a year get Lyme and go forever without diagnosis.  It's a silent pandemic and our greatest medical controversy.  Do yourself a favor and see an LLMD.  They have the tests that will detect Lyme infections that are over a month old and that's what you'll need if it's Lyme.  Yes, it's expensive but the costs of delays are great too.  Good luck!
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