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,
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.
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.”
C.F., was your gallbladder removed and then the pain began? How was the SOD supposedly ruled in or out? Was an ERCP with manometry done? Have esophageal spasms been ruled out? What other tests were done?
1) an enlarged CBD (12%) and
2) increased pressures measured during the ERCP and the sphincter manometry.
Therefore, the doctor did a sphincterotomy. My blood work was always fine.
After the surgery, I was less nauseated and could eat more, but I still had severe pain. The doctor then told me that I could not have had SOD because if I did, his surgery would have fixed it. Then he said there was NOTHING else anyone could do for me, so I should just go to a pain clinic. I'm embarrassed to say that I BEGGED him for some other doctor to see, but he said there was no hope of improvement.
I do have esophageal issues, but it's only been identified as "nut cracker esophagus", which is some form of motility issue. That's been going on for years before this pain started.
Otherwise, I've had x-rays, ultrasound, HIDA scan, MRI, EUS, CT scans, celiac bloodwork, bone scan, and Lymes disease blood test.
I just met with my regular doctor this week and she took blood for multiple tests. I feel so tired and I'm getting sores inside my mouth along my lips and cheeks. I think it's from the medications, but I wanted to get liver and pancreatic values checked just in case something has changed. My doctor told me she was afraid at first that I had pancreatic cancer. She also said that she will order more scans if the bloodwork looks bad in any way. She's been my ally through all of this.
I'm also seeing a kinesiologist, which is sort of a last ditch effort to get help. We've tried everything else we know of. We have talked about going to another medical center like MUSC or the Cleveland Clinic, but I don't really know if anything more can be done. We're spending about $400-$600 a month on unreimbursed medical costs. If we go across country, it will cost a lot more. If there's hope of some new therapy, we'd spend it in a heartbeat. This condition has completely changed my life. I can't work. I can't drive. I can barely eat. I can't go out and do things with my family, and so on. I feel like a hermit. I'm scared that I won't be able to attend my daughter's wedding this month.
I have also started seeing a therapist who specializes in helping people deal with chronic pain. I don't know that it's going to mitigate the pain, but I wanted to show my doctors that I'm doing everything on my part to "take responsibility" for my issues. I did it after reading the articles that allege that people with FAPS mostly have psychological problems, and that they are reluctant to accept ownership in the disease. I think that's a ridiculous conclusion, but I'm jumping through whatever hoops I need to so I seem cooperative and in good mental health.
I appreciate your interest in this post. I think we've chatted before.
Hi, Kelly. Yes we have chatted before, but I'm sorry that this chat is over your feeling rotten.
I read and re-read your post a few time, took a deep breath, and went to do something else before I came back to talk some more. I wanted to take a couple of deep breaths and calm down a bit before I blew my 'stack' in public. I'll try to say this as gently as I can - and believe me, my initial words would have been bleeped off the board. Your GI doc/surgeon was an insensitive idiot, and who died and left him in the position of playing God????!!!! Although I do think from what a lot of us have experienced that the designation 'god' seems to be etched into the M.D. mentality sometime after they go through internship and residency.
Thank goodness you've got a regular doc who's trying to give you a hand and that you're also trying to find other therapists who will also try to assist.
SOD can be a very, very difficult condition to try to treat and from what I've seen regular GI docs should refer patients suspected of having this condition on to docs who specialize in conditions such as this.
I don't know whether or not that's what's happening with you Kelly, but it kind of sounds like it. I don't know where you're located, but have you considered sending your file to the center at the University of Indiana to the attention of Drs. Sherman or Lehman (I believe)? That center is well-equiped to evaluate and try to help those with SOD, or to evaluate whether or not the condition is SOD.
Things can be done for SOD. Granted some of them are a bit more drastic than others, but no one can live with that problem without having one hell of a lot of help.
Sphincterotomy in some cases is only the first step.
Before you jump onto the fibromyalgia wagon, you may want to get an expert opinion. I'd really, really like to push you to 'go to the top' and ask the people who really know what SOD is if you have the condition or not.
It's so nice to hear someone else's indignation on my behalf. I feel very alone at times in this stupid mess. My husband and family completely support me, but can't really fathom the depth of pain I'm in every day.
I do feel like the doctors at OHSU did NOT do a good job of examining me, but that tells me that they are not competent to treat me. I would much rather fly across the country and be treated by a doctor with the right medical expertise, than to be hurt by someone who's local, but undertrained.
I live in Portland, Oregon, but I have already traveled to Seattle for my ERCP/spincterotomy at Virginia Mason Medical Center. I will look into the University of Indiana to see if those doctors are accepting patients. I know I've seen their names on medical journal papers about SOD.
I was so devastated by the OHSU visit that I couldn't decide if I should try again to get help, or just take what they said and give up. I just feel so sick all of the time, so even if my pain level is low, I still don't feel like getting out of my chair. I feel like I've lost my life over this, so I can't quit looking for a better answer. My husband has had to take over almost everything in the household and he works full time, plus travels for work.
Thank you for answering my post and offering support. It has given me a big boost, and a renewed attitude toward finding another place to get treatment.
By the way, how do you know so much about SOD? Do you have it, too?
No, Kelly, I don't have SOD - thank whomever for BIG favors. But I have been 'through it' with another unfortunate individual. I only wish I had pusher her harder, earlier. Perhaps she would have had less difficulty.
As for giving up...................YOU'RE NOT ALLOWED TO! Period. End of that topic. FORGET IT!
Now...............got that straight???!!!!
You've got to get another opinion. If SOD is then ruled out, then about 200+ people on this board will have to put their heads together with yours to try to figure out who the heck we should 'bug' to try to find out what's actually going on.
Look, medicine isn't really 'science' - kind of - it's more of an art that slowly accumulating enough ways of testing things to become a science. Docs do the best they can (some are a LOT better than others), but they're just people like the rest of us. Sometime you can consult a 'regular' person within that group, but at other times you need to go to 'the top' - the experts within the group.
Get your records together and make a call to the 'experts' and see if they'll review your information. The worst they can do is say no, right? Go make that call..............it's worth it.
I did send in a preliminary request for an appointment at the University of Indiana, but I'm actually reluctant to fly out there. It's very possible that I do have FAPS, and that may just be a tough diagnosis I have to accept. I was just hoping to hear from someone else who has been down this road.
I have read everything I can get my hands on, and I do meet ALL of the Rome III criteria for FAPS, and I do NOT meet all of the criteria for SOD. The main difference is that my pain is constant, and not episodic. If do have FAPS, and I continue to use narcotics for pain relief, it can cause paradoxical reactions in the gut and actually INCREASE the pain, plus cause terrible constipation (Narcotic Bowel Syndrome).
I also have to add that I do actually have fibromyalgia (28 yrs of it!), but I'm not entirely convinced that's the main cause of FAPS. Lots of people who have FAPS, do not have fibromyalgia, and vice versa, so the causal link is not incredibly strong. I think doctors just have a prejudicial attitude toward anyone (especially a WOMAN!) who confesses to having FM. I usually won't even tell a doctor that I have it, unless it's absolutely necessary. I feel like they don't listen very well once the word is mentioned.
So, if anyone out there in cyberspace has had experience with treating the pain of FAPS (non-IBS type), tell me how you did it!
I am willing to try what the pain doc @ OHSU suggested and switch from narcotics to other, supposedly more effective medications, like antidepressants and anti-seizure drugs. I'm just TERRIFIED of the pain being out of control during the transition. When my Fentanyl patch and Norco wear off now, I just feel like curling up in a ball and crying. I can't just "get distracted" (as I've been told to do) and have the pain magically disappear.
I am debilitated when I don't have enough pain drugs, on board. That's really scary. I'm a 51 year old mom of 6 kids and I never would have believed I'd end up dependent on narcotics. I never even smoked pot as a teenager. I'm a full-fledged "teetotaler", too, so, I don't even drink alcohol! And now my life is narcotics, tranquilizers and muscle relaxers, 3-4 times a day. It feels ridiculous, so I know I have to do something else. I'm just not sure what else is the best next step.
Does this make sense to ANYONE else out there? *Sigh*
Thanks again for showing support and sympathy for my situation. It's nice to hear someone confirm that I'm not completely crazy.
I have a feeling that I may be heading down the path you are, though currently my symptoms and pain levels have not reached the levels that you have described. I have mild pain throughout the day, generally radiating from my abdominal area and up through my left side of my back, but for me, the worst pain is in the mornings, usually after about 4am. This has been going on for a number of years now, and I've kind of just accepted this as part of everyday life, though I seem to be losing sleep and feeling constantly fatigued. This is what lead me to see the doctor in the first place, along with some gentle persuasion from my girlfriend.
My bowel specialist is busy ruling out conditions like crohn's and colitis, but everything that I have read online leads me to believe I am suffering from FAPS. I'm booked in for a colonoscopy and gastroscopy to rule these conditions out, and I'm fairly confident they will come back clean.
As I've been reading through various studies and online forums, I've come across some results which seem to indicate that diet may have some impact on the condition, particularly FODMAPs. In some studies on children, FODMAP restricted diets improved symptoms in over 80% of cases.
Essentially, I'm holding off on adjusting my diet (I'm already gluten free due to celiacs disease) until after the tests, just to make sure I don't compromise the results, but I plan on completing an elimination diet and reintroducing foods one by one. Not sure if this will help with my condition at all, but I'll certainly post back and give you an update. Note that the elimination phase generally lasts 2-4 weeks, so might be a while before I post back.
Just reporting back as promised. I get my biopsy results tonight, but I started my elimination diet after my colonoscopy and gastroscopy. I did the prep for it starting on the Saturday night, had the colonoscopy and gastroscopy on the Monday, started my diet Monday night and by the Wednesday I was no longer waking up early in the morning with abdominal pain and wasn't experiencing pain throughout the day any more. My energy levels were up too...I wasn't getting completely lethargic by 3pm.
So, at least for me, it would seem that there is a direct connection between what I've been eating and the daily pain and discomfort I've been experiencing for the last 3+ years. The elimination part of the diet is a bit boring and strict, but you can still make tasty meals. The results (for me) were quite fast, and I'm glad I attempted it, simply to validate to myself that there is a connection. I'm in the process of reintroducing foods and keeping track of symptoms, and so far so good. I'm leaving off grains and most carbs until later, but you wouldn't believe how good it feels to be able to eat eggs or broccoli again after 2 weeks on the intro diet!!!
I realise my posts are a long time removed from your original posts, and I really hope you have found something that works for you and brings you relief. If not, do some research into elimination diets. I found the book Digestive Health with REAL Food by Aglaee Jacob MS RD (Amazon / Kindle) extremely informative and followed this as a guide.
I spent 3 years w/docs trying to figure out what was wrong with me. I eventually figured it au searching the internet and joining support groups. Support Groups have wonderful resources and information. Even had your same diagnosis from a well know university. Had a botulism injection, etc., etc. The best in the SOD business is Dr. Freeman w/the University of Minnesota. I emailed him directly, flew to see him, had the appropriate tests done and had dual sphincterotomies the same week. Five years later I flew back again and had a sphincterotomy again. Contact him! Fortunately or unfortunately, I was put on Cymbalta 3 months ago and loved it! I had energy, it helped my severe depression and other back pain and masked the SOD pain that I still had. I also take Tramadol, but have had to cut that way back due to the interaction with the Cymbalta. Long story short, The Cymbalta now seems to be making the SOD pain worse. My pancreas swelled last week and I was on the verge of developing Pancreatitis. I'm still taking it, but also still dealing with the increased pain. I am currently discussing the situation w/my doctor and trying to figure out what to do. Until the Cymbalta, I had a difficult time keeping a job due to the extreme fatigue/pain/anxiety. I'm torn, but my advice would be NO to the Cymbalta. There's activity out there and research questioning the connection. The FDA has had 34 reports of people developing SOD after taking Cymbalta for just a few months. I hope this helps in some way.
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