Functional Abdominal Pain Syndrome (NOT IBS)

[CasperFrench]

After numerous tests and 2 surgeries, what first appeared to be gall bladder disease, and then Sphincter of Oddi dysfunction, is now being diagnosed as Functional Abdominal Pain Syndrome (FAPS).  (IBS is also under the designation of FAPS, but my illness is not the IBS type.)  
My pain is throughout the entire right upper quadrant of my body:  abdomen, chest, ribcage, shoulder, arm, back, etc. The pain feels like someone is digging into my stomach with a shovel just under my ribcage, or like my chest is being crushed, or feels like I’m being stabbed with a spear from my chest to out of my back, and so on.  It’s only on my right side.  I don’t have diarrhea, constipation, or bloating, but I do feel nauseated often.  I live with terrible, gnawing pain every day of my life.  I’ve been using Norco, Fentanyl patches and Flexeril to control the pain and they have been doing a fairly good job of keeping me comfortable, though I’m never completely out of pain, at least I can function.
I met with a new pain doctor today, who told me my problem was due to my Fibromyalgia and that narcotics won’t control my type of pain (although they currently are controlling it!).  He wants me to end my current medications and start taking Lyrica and Cymbalta, instead.  I really, really don’t want to be on those medications due to the long-term issues and side effects.  I know it’s not good to be on narcotics long term either, but after reading about other people’s experiences with Lyrica and Cymbalta, especially, they don’t sound much safer.  
Has anyone out there got any experience or knowledge about this syndrome?  The doctor today said that there’s NO treatment to end the pain.  Not even any nerve block techniques.  I can’t imagine living like this for the rest of my life.  There has to be another answer.  
Please let me know if you have any helpful information about this type of FAPS.  I’m willing to fly to get further help. We live in Portland, Oregon, and our last shot here was at the teaching hospital, OHSU, where I received this latest depressing information.  
Thank you for your time,
C. F.

[oregonmama]

My son has been experiencing similar problems.  He's had the pain on and off for years and most recently it has not stopped for 2 months.  We just left OHSU this week.  After two different scopes we were given the same diagnosis.  We completely feel like it's a "I don't know" diagnosis.  I'm curious if you are able to eat or drink with no pain?  My son has lost over 20 pounds now because of that.  Have you looked into chiropractic care or accupuncture?

[CasperFrench]

Hi Dr. Kaul

First off, I really appreciate that you took the time to answer my post.
  
Secondly, I concur with your thoughts about attending a teaching university.  I waited four months to get in to the Oregon Health Sciences University.  When my appointment time finally came, I met with a resident.  I was really expecting a thorough exam, but she just poked in the abdomen 3 times, listened for bowel sounds, listened to my heart and lungs, and that was it.  I was still in my street clothes.  

Then the head of the GI department (Dr. Brian Fennerty) came in and very kindly told me there was nothing more they could do for me, except to send me to their pain clinic.  That was it.  No tests whatsoever, even though my last ones had been done over a YEAR before.  The doctors had just read my old file records, and made their conclusions before they ever saw me.  

The year before this, I went to Seattle to the Virginia Mason Medical Center because I heard they had a great GI department.  That’s where I had my work-up and surgery for Sphincter of Oddi dysfunction.  When that didn’t ameliorate my pain, the doctor told me to go to a pain clinic.

So, I don’t know where to go now.  My pain is worsening, and I have constant nausea.  I sent out my prior post hoping that someone out there might have a fresh approach for this situation.  I would gladly go to a different teaching university if they could tell me something besides, “go to a pain clinic.”

Thank you again for your help,
C.F
Portland, OR

[S. Kaul, MD]

Hi there!

Well, without a clinical evaluation it would be difficult to determine the cause of your symptoms. Possibilities that may need to be considered include infections, inflammations, autoimmune conditions, micronutrient deficiencies, hormonal/ endocrine abnormalities, GI motility issues, medication side effect etc. I would suggest getting this evaluated by an internist preferably at a university/ teaching hospital and depending on the cause diagnosed/ suspected, it can be managed accordingly or specialist care may be sought.
Hope this helps.

Take care!