Hi, you probably won't see this as you posted back in 2012, and I do hope that you have had a diagnosis by now. I'm a Medical Editor and I have been doing some research for a book on acute hepatic porphyrias (a group of rare inherited diseases that cause acute attacks of abdominal pain - plus other symptoms). The main symptom of severe abdominal pain often starts with a 'prodrome' - like the feeling you get - and then worsens (although usually over several days rather than hours as you describe). Doctors often don't consider this as a diagnosis for unspecific abdominal pain and the average time to diagnosis is 15 years! In the meantime, patients undergo lots of tests and inappropriate treatments. There is, however, a simple diagnostic test - ask for a urine spot test for PBG (porphobilinogen). It's best conducted when you have the symptoms, I think. It is highly specific for acute hepatic porphyria, so at least you could rule that out if it comes back negative. If it is positive, your specific type of porphyria can be determined by genetic testing and can be managed appropriately. Just a thought, but your description sounded very similar to what I have been reading about. Note: it's the test for BPG that is needed, not a urine test for porphyrins, as there can be many reasons for increased levels of urinary porphyrins which are not AHP. Hope that helps.
Do you think it can be a hiatal hernia? Much of what is described here can cause it to act up. I have the same issues. Read that the hernias can be missed/overlooked. Please, if you have an answer, post it! It’s horrible living with this.
Hi everyone, I posted on here almost a year ago and I'm still in the same boat! My attacks haven't stopped and doctors are still dumbfounded! It's been suggested that though I do not have the gene for Familial Mediterranean Fever, I might still have it. Which made me wonder: Is anyone else who has posted on this forum also of Mediterranean descent?
I’ve had this happen three times, the most recent one being last night. I found this thread last night and was shocked how it fit my symptoms exactly. I asked my sister about it today to see if maybe it’s genetic and she had also experienced this. She’s a pediatrician, and said it sounds very similar to abdominal migraines. They are much more common in children, but can happen in adults—just much more rarely. Someone on the thread also mentioned light sensitivity, which goes with migraines. Since these always hit me at night, it’s hard to say if the light sensitivity for me is because of a migraine or just the time of day and darkness. It might not be abdominal migraines (especially since what I’ve read that pain seems closer to the belly button rather than up higher), but it’s an interesting possibility. My sister said typical migraine medication can help when it happens in kids and teens, so it could be worth talking to your doctors about...
I have the same type of event-having it right now. I have them about 1-2 months apart, pain starts around 7-10 pm, and lasts 12-15 hours and goes away. I have had this happen to me in the last year about 9 times. The pain begins in the upper right rib cage area, and over the course of the episode spreads to other areas then goes away all at once. Before the pain begins there is a short span of stomach discomfort like indigestion. After eating dinner I go to bed, but wake up in throbbing pain in the right rib cage area. There was no sleep position I could find where pain dissipates. However, standing, and alternating sitting positions did reduce the pain level, but not the stomach discomfort, feel nauseous, and like I needed a bowel movement, burp, or throw up. I do have acid reflux, and some sort of stomach bulge between my rib cage. I have yet to seek medical treatment for this, but now believe this is not a food issue but an organ malfunction that is heightened by food intake. I do not believe what is consumed makes any difference. Last month I felt it come on while I was having dinner, stopped eating, felt the normal stomach discomfort, but the stomach pain did not follow, but, that might have just been a coincidence. I plan on getting my colon checked first, then gall bladder, then all other things mentioned by previous posts. I think the only way this will be solved is to get tests done during an episode which may prove to be difficult.
Hypothalamus dysfunction.
Antidepressants caused that for me. Stopped the medication & symptoms slowly resolved. Other factors that anger the hypothalamus: https://medlineplus.gov/ency/article/001202.ht
I'm so late to the question, but feeling confident in the causation.
Hi everyone,
It is crazy to think there are 95 people in here who have the same symptoms that progress in the same way and follow the exact same pattern. This tells me it is not just any old IBS or "Stress" - it's too similar to be a coincidence in my opinion. At first I was shocked when I discovered this forum, it was almost as if I'd written that initial post myself.
Ever since I read that first post I have been following this forum in the hopes of finding a solution/cure/any information that can contribute really.
My story is very similar to everyone else here:
My symptoms started (August 2012) almost 6 years ago. The attacks are usually 2-3 months apart, but lately it hasn't followed any rules and it's sometimes been 5 months, other times 5 weeks...
Pre-Attack:
I will know an attack is happening before it happens. My body warns me with a mild pain that references the one that comes later and after five years I know that this pain is like any other and that I am due an attack that night. I usually get them at night and on weekends. I have had one or two in the morning or during the day.
During Attack:
I will usually feel the first sign at about 6pm and then it will properly be in full force by 10pm. I will have cold shivers to the point that I feel my bones cannot keep warm. I will have excruciating pain in a very specific point in my abdomen (about 5cm above the belly button) Like a constant sharp stabbing. This will continue no matter how I sit or lie (though sitting up sort of bent over is preferable at times). Bowel movements are either non existent or frequent but don't help the pain either way. I usually start belching a lot towards the end and my stomach is very distended before, during and after. It is also Extemely sensitive to touch.
The only thing I have ever found that helps me is Iburprofen (in the beginning Doctors were always baffled by this as stomach pains should not be treated with that at all, but this is how I knew it was inflammatory long before I saw any blood work) and MOST IMPORTANTLY - a VERY hot water bottle directly on the source of pain. I usually take the bottle out of it's sleeve so it almost burns my skin, the hotter the better.
Post Attack:
I am usually so exhausted from the pain that I eventually fall asleep and wake up covered in sweat as if I'd just had a very bad fever. From then I will only have the residual pain as if I have stretched a muscle within my stomach/abdomen. Going over bumps in a car etc makes me wince, I am obviously exhausted and a bit sore but otherwise I am completely well within myself. This has always amazed me. It comes as quickly as it goes.
Triggers:
I will mention a few things that I have noted but I don't believe anything is a trigger per se.
1. Hunger
I usually find if I get to the point of "stomach eating itself hungry" it can 'trigger' an attack
2. Stress
I usually always get an attack after something stressful, even if I don't realise I'm stressed myself, it can be the tiniest thing
3. Getting Cold
If I feel myself get cold during the day or shiver, I sometimes find it can be a precursor for the shivers to come later
To rule out food allergies as a trigger - I have been tested for all kinds of food intolerance. I can confidently say - at least in my case - it isn't food related. I have quit Sugar, Dairy, Wheat, Alcohol, Gluten - even niche things that a very high-end intolerance test pulled up: Crab, Pineapple, Amaranth etc... I still got an attack anyway.
I too have had hundreds of blood tests, endoscopy + biopsies, gall bladder ultrasound, liver fibroscan, gall bladder checked, H. Pylori checked, I've been tested for Familial Mediterranean Fever, stool samples... ALL completely normal!
The only thing I have found is that my CRP levels in my blood tests (inflammation markers) are always elevated. My ALT (liver enzymes) for the last two tests have been slightly elevated as well. Hence the liver scan which was absolutely normal.
Has anyone else found their CRP levels are raised? I haven't noticed anyone else mention that of yet.
If anyone else has anything else to add, any leads, finds or cures, or even a source of comfort or solution to the pain during an attack I'd be really grateful :)
I have similar bouts 2-3x/year for the last 4 years. It starts with what feels like a barely noticeable yet irritating burning 2 inches above the belly button within 30 minutes of eating for a day or two. That sensation subsides replace with a minor yet irritating 'throbbing pain' to the left of the belly button about 2-4 inches. This goes on for a day or two then I begin getting a sympathetic, very noticeable throbbing pain radiating from the left side of my spine outward to the left 45 degrees up & the same down. After exhausting all the usual tests (CTs, colonoscopy, etc), I insisted on a scan of my pancreas & my gallbladder which came back showing normal functions for both. I'm at wits end to figure out what this is beyond some mild form of IBS or very "quick and small" kidney stones (it seems that both of these diagnoses are par for the course for sources of pain in this region when nothing shows up on scans). Like most others here, I don't drink alcohol regularly (maybe a glass on NY or at a special occasion), I have never smoked, I do not take prescription nor non-perscription drugs, I drink water and black coffee only (no sodas, etc), I do have dairy fats in my diet but not to any excess (a pat of butter or two for cooking if I cook, some low fat milk added to a rare oatmeal or to a recipe, 2 tbsp of white cheeses to top salads, etc ), I eat beef & chicken maybe 1x/year & never touch fish, & most of my fruits & veggies come from my farm. It's all very weird indeed. Now one thing I did ask the doctor since I eat a lot of peanut butter/peanut butter powder is whether this might be a late life food allergy/intolerance. His answer was expectedly "no" since I constantly eat peanut butter & the symptoms are rare occasions. Who knows really.... it wouldn't bother me but for the fact that I realize pain doesn't occur without a reason & I'm fearing something like "cancer" isn't being detected (I do have very low Vit D levels no matter how much I supplement w/D3). Anyway, UR not alone. OTOH, if U haven't had your pancreas & gallbladder checked out, you might want to have your Dr. give U an Rx to have these scanned.
After reading the symptoms described in all these posts, I believe there are multiple GI issues going on here. So, even if someone did find a "cure", it would probably not resolve everyone's problem on this thread. I am posting on here for both of a type of support group therapy, and a hope of finding a cure. I pray that everyone suffering from any of their symptoms does find a cure. I also encourage anyone who has found relief or a cure to post their story on this thread. I am interested in anything that anyone has to say about what has helped them.
I am a 42 yr old male who has been suffering for about 30 years from most of the symptoms described here. I'm "glad" to have found this thread, because for all these years I thought I was the only one who suffered like this. I have been through multiple doctors and most of the standard GI tests throughout my life. I finally gave up going to doctors about 10 years ago when the last specialist I saw diagnosed me with IBS. That's the first time I ever received a diagnosis. And even though it felt good to have an actual diagnosis, did it really help? No, because I still suffer. My episodes are unpredictable, and I live in constant fear of them occurring, especially during an important social event or just a fun night out with friends. It's been such a big part of my life for so long, that it's always on my mind without me even being consciously aware of it (if that makes sense). So, in a way it controls my life and I hate it for that.
I'd like to break down this post down into 3 different sections, if only for the sake of the therapeutic properties of telling my story. First, I will describe my symptoms. Second, I will discuss what I KNOW brings on my symptoms, and also what I THINK might bring them on. Last, I will tell you what I do to help myself ride-out these "episodes".
1. Around the last 30 years of my life, my symptoms have remained pretty consistent. It's a dull pain WITHOUT NAUSEA (different from most symptoms in this thread). Time and pain varies a little with each episode, so the following will describe what generally happens.The episodes happen once every 3 months on average. It starts in the mid-afternoon and lasts between 6-9 hours. I begin to feel a dull pain in my upper right abdomen. It progressively gets worse throughout the evening, peaking at about a 8 or 9 on the pain scale before subsiding almost instantly. It kind of feels like something "moves" in my bowels out of the pain area, and that's how I know that the pain is about to subside. I also start to feel hungry , sometimes even when the pain is still at its worst, but I dare not eat for reasons I'll describe below.
Anyways, the pleasure from the lack of pain is extremely welcome by the time an episode is over. I'm finally able to relax and fall asleep. I should mention that over the last few years, heartburn sometimes occurs with these episodes, and Tums helps that, but not the other pain. The next morning I'm fine, but will still be "tender" in that area for the next few days. Sometimes an episode will occur two or three nights in a row, but that is not the norm.
2. Here are a few things I've learned to avoid over the years, which almost certainly bring on an episode. Obviously, these are not the only things that bring on the pain. Otherwise, I'd just avoid them and be fine:
- Overeating - I have been teased many times for "eating like a bird". This means that I eat light meals and snack, rather than eating large meals. When I eat too much, it seems to just sit like a lump in my stomach and will eventually bring on an episode (not always, but very often).
- Spicy foods - I tend to avoid them. Occasionally, I'll eat food with some spiciness and I'm fine, but I've noticed that episodes have come on after eating very spicy foods.
Here's a list of things I THINK may also cause an episode:
- Strenuous activity after eating: I seem to be okay with light activities like walking after I eat. But one time an attack came on after I ate lunch and helped my brother install flooring.
- A traumatic event occurring during the day - something out of the ordinary that happened that day which disturbed me emotionally.
- Stress over a period of time - Stress at work, home, etc. that goes on for days or weeks
- Special Events - I've had several episodes during vacations. Not sure if it has to do with stress from travel, routine being out of the norm, or whatever. One episode also came on the night I was throwing a bachelor party for my brother, as I was the best man. I had to leave the party and leave my cousin in charge. I've also had attacks on a couple of Christmases, where my family and I had to visit multiple families in the same day. Not sure if this was stress induced, or overeating. Maybe both.
- This may seem weird, but I've had some episodes occur after I was wearing new (maybe tight?) pants.
As I stated above, this is definitely not an all-inclusive list, because many episodes have occurred when I haven't eaten anything spicy nor had been through anything stressful or done anything against my normal routine.
3. Although I haven't found a "true" cure, here's some guidelines I follow to get through these attacks.
- NOT Eating or drinking during an episode - I've learned that eating or drinking ANYTHING will only make it worse (more pain and/or last longer). I get really thirsty and hungry toward the end of my episodes, but dare not put anything in my stomach until I'm sure it's over. Sometimes, I'm actually able to lessen the time-frame of the attack by not eating or drinking during it.
- Soaking in a hot bath temporarily helps ease the pain. It also relaxes me, sometimes helping me to fall asleep shortly after I get out of the bath.
- Massaging muscles in my rib cage around around the painful area and also in my back behind the pain area. Sometimes I can't tell if the pain is coming from my back or my abdomen. I'm not sure if this is due to nerve connections, or if maybe it's because my body tenses up during these episodes, causing my back to hurt as well.
- Here's a weird one, but I think it's worth mentioning because it helps ease my pain. No body position had ever helped my pain until I discovered one a few years ago. If I lean over the arm on a couch in a certain way, it somehow eases the pain. I kneel on the edge of the couch cushion, with my knees against the bottom of the arm. The arm must be high enough to support me in a "half-fetal" position, to where I can put the full weight of my chest on the upper part of the arm. I let my head and neck relax so that I am staring down at the floor to the side of the couch. My head does get some pressure from the blood being pulled to it by gravity, but this uncomfortableness is worth it due to the ease of pain that this position provides. I try to stay in this position as long as possible until the pain subsides. I've even been able to fall asleep and stay asleep, waking up after the pain has left. I have no idea why this helps.
Well, that's everything I can think of so far to write in this post. If I think of anything else or happen to find more ways to relieve the pain, I'll post again. Until then, may God Bless us help us find comfort and ease our suffering.
- 311Brodel
Not sure how long ago this post is. Several years ago I had almost the exact thing. With the episodes lasting that long. Always at night. Eventually though started lasting s little longer and it was memorial weekend that I guess it was an attack and was out of town so I dealt with the 3 days of excruciating pain. When we got back we went to the hospital and found out I had a gullstone attack
Female - 66 years old
I have absolutely the same problem that many of you have and you have no idea how *nice* it is to know that I'm not the only person who is suffering with this pain and no explanation as to why!! I had considered (and only just 'considered'...lol) telling my family GP about it but since you all have had so many tests,procedures,etc.,I'll definitely be saving myself the trouble,now! The first time I experienced this pain was about 7-8 years ago...about 4-5 hours after supper and it lasted about 6 hours. I hadn't had it again until about 6 months ago and it's happening 1-3 times a week,now!! I have found that I dare not over eat...I have to be careful to not eat any meat (beef or pork) and not a lot of chicken or fish! Last night I was suffering again until about 2:00 a.m....I had 3 mouths-full of baked ham! I've given up having butter on my mashed potatoes and trying to stay completely away from any fat,of any kind at suppertime. Then I make a huge mistake (I think) by having a very small bowl of ice-cream at 7:00 p.m.! I'm starting to think that the ice-cream is a/the culprit (the kind I eat has a very high fat content)! This evening I'm having a small bowl of chicken soup for supper and I'm going to try to stay away from the ice-cream container!!
I haven't read about many of you having "spasmodic" pain...my spasms last about 20-30 seconds and then eases up/off for 3-5 minutes or so and then another spasm lasting 30 seconds or so...and yes,it's pretty much about a "10" on the pain scale (I've found that deep breathing during the pain helps 'deal' with the spasm). I don't get nauseated (no throwing up) nor do I need to use the bathroom....I just have pain directly above my navel/belly-button! Pepto Bismol did help to ease the pain many times but never stopped it (and I'm saying about 4-5 tablespoons...not the piddly little amount suggested on the bottle)!
Have ANY of you ever been tested for "H-pylori"?? (Helicobacter pylori....a type of bacteria & these germs can enter your body and live in your digestive tract). It's "curable" with 2 different antibiotics but I'm allergic to most antibiotics,couldn't take those so I'm left to suffer.
It's a very simple blood test...nothing invasive! I tested positive for it about 20-25 years ago but was having no pain,then....just a VERY "sensitive stomach"!
*My* pain,now could very well be caused by/due to the bloody H-pylori....which,btw can also cause ulcers!
Female - 66 years old
I have absolutely the same problem that many of you have and you have no idea how *nice* it is to know that I'm not the only person who is suffering with this pain and no explanation as to why!! I had considered (and only just 'considered'...lol) telling my family GP about it but since you all have had so many tests,procedures,etc.,I'll definitely be saving myself the trouble,now! The first time I experienced this pain was about 7-8 years ago...about 4-5 hours after supper and it lasted about 6 hours. I hadn't had it again until about 6 months ago and it's happening 1-3 times a week,now!! I have found that I dare not over eat...I have to be careful to not eat any meat (beef or pork) and not a lot of chicken or fish! Last night I was suffering again until about 2:00 a.m....I had 3 mouths-full of baked ham! I've given up having butter on my mashed potatoes and trying to stay completely away from any fat,of any kind at suppertime. Then I make a huge mistake (I think) by having a very small bowl of ice-cream at 7:00 p.m.! I'm starting to think that the ice-cream is a/the culprit (the kind I eat has a very high fat content)! This evening I'm having a small bowl of chicken soup for supper and I'm going to try to stay away from the ice-cream container!!
I haven't read about many of you having "spasmodic" pain...my spasms last about 20-30 seconds and then eases up/off for 3-5 minutes or so and then another spasm lasting 30 seconds or so...and yes,it's pretty much about a "10" on the pain scale (I've found that deep breathing during the pain helps 'deal' with the spasm). I don't get nauseated (no throwing up) nor do I need to use the bathroom....I just have pain directly above my navel/belly-button! Pepto Bismol did help to ease the pain many times but never stopped it (and I'm saying about 4-5 tablespoons...not the piddly little amount suggested on the bottle)!
Have ANY of you ever been tested for "H-pylori"?? (Helicobacter pylori....a type of bacteria & these germs can enter your body and live in your digestive tract). It's "curable" with 2 different antibiotics but I'm allergic to most antibiotics,couldn't take those so I'm left to suffer.
It's a very simple blood test...nothing invasive! I tested positive for it about 20-25 years ago but was having no pain,then....just a VERY "sensitive stomach"!
*My* pain,now could very well be caused by/due to the bloody H-pylori....which,btw can also cause ulcers!
I am a Mold Patient, and have noticed that 3 out of my 4 attacks have been right after visiting Moldy (funky smelling)houses. My 4th attack was from a bad egg salad sandwhich and other travel food I was not used to for 2 days of airport hotel food. IBS symptoms are typical of Mold patients. Sensitive immune systems are typical of Mold patients too.
Has anyone been diagnosed with Diverticulitis?
I've also experienced the exact same symptoms as described above and I was finally diagnosed with eosinophilic esophagitis. It's basically upper GI inflammation caused by reflux and/or a food allergy. You have to get a biopsy of your esophagus taken to be diagnosed as it can often appear "normal" with just a scope. I was given a prescription for a PPI which helped a little but eventually I discovered I had a mushroom allergy and I was reacting to foods with mold in them including some cheese, beer and wine. Hope that info is helpful for some of you too.
No, after July and August 2015 episodes, it has not recurred. Don't know what triggered it although I had undergone a cardiac cath July 7, 2015 where they go in thru your groin and feed a catheter up to your heart thru the abdominal aorta which runs alongside your spine. I wonder if maybe some nerves got irritated which triggered the spasming and, once the inflammatory response subsided, so did the episodes.
It is truly amazing how similar my symptoms are to the ones you have discussed. Is this a form of IBS? I have been searching for answers yet have found none. I have intense stomach pain for 5-7 hours every few months. It reaches a 7-9 on the pain scale as you have discussed.
I experience these terrible episodes too, started when I was a kid. I too seem to be an 'anomaly' to my doctors. But, I have noticed that it happens with stress and constipation. I'm actually having an episode today, it's 9pm and it started around 11am. I avoided the ER today though! I usually can't make it through the pain but I tried the new anti spasmodic prescription and pain med I have to take prn (hycosamine and baclofen). The meds helped, still had bad pain but it was manageable. Anyway, I hope you at least have those types of meds to get you through your episodes. It's a relief to hear there are others that have experienced this.
MALS - celiac compression syndrome
Look up MALS (Median arcuate ligament syndrome) or celiac compression. I had the stomach issues in July and August 2015. At the time, I didn't know what it was, but I saw this post while I was doing research and the description matched what I was going thru. In August, I went thru a EGD/colonoscopy, did Prilosec, and it seemed to resolve on its own. Didn't think any more about it until today. Today (Feb. 2016), I got the results of a CAT scan of my chest for a heart issue and it turns out that the symptoms we all seem to be describing may be due to impaired blood flow because of a structural defect in the muscles and blood vessels just under the diaphragm. I hope this helps some of you solve this mystery. Discuss the possibility of MALS with your physician.
I've been having similar pain after lunch for the past week. This did not happen over the weekend, which I found to be odd because my diet is the same. My activity is slightly subdued, I suppose. While the timing is completely different, your description is perfect. I thought it was the introduction of coconut oil into my coffee in the morning. Stopped that and still had pain. Tried drinking tons of water with my meal, tried drinking noting at all.
At this point I just plan to bear it. I can't afford $10,000 worth of testing for guesses. I've found that Alka-Seltzer seems to help a little bit.
Have you tried medicinal marijuana or CBD? I've read that it helps with the muscle spams, inflammation, and GI issues. Just throwing it out there.
I have had the EXACT problem !!!! I've been to the ER 7x last year for it . Hosp says pancreatitis, my dr says gastritis or SOD , another told me endometriosis which is just pulling things out of a hat . In 2 months I've hat 5 attacks and the pain is hideous . I do have 3 meds and pain killers to take to get through it . But it is affecting my life and I'm becoming depressed because no one can figure it out . We have mirror symptoms ... something that dr's are missing .
I just spoke to my doctor. I am going to get tested for Sphincter of Oddi Dysfunction. I don't know if any of you have been tested for this and if it was ruled out. Once I get checked and find out, I'll let you guys know. From a website:
Functional disorders of the gallbladder, bile duct and pancreas have been defined and classified by the Rome criteria for functional gastrointestinal disorders.[2] The criteria outline three variants of functional disorders of the gallbladder, bile duct and pancreas, termed functional gallbladder disorder, functional biliary sphincter of Oddi disorder and functional pancreatic sphincter of Oddi disorder. All of the following criteria need to be met for as part of the definition of a functional disorder of the gallbladder:[2]
the pain must be located in the upper part of the abdomen and/or the right upper quadrant of the abdomen
episodes of pain must last at least 30 minutes
the symptoms must be recurrent, and occur at differing intervals
the pain must incrementally increase to a "steady level"
the pain must be severe enough the patient's daily activities are affected, or that the patient must attend the emergency department
the pain must not be relieved by any of bowel movements, change in posture, or antacids; and,
other structural disorders that could explain the symptoms must be excluded.
Go get checked!!