Can anyone tell me if SOD type 3 can also give ULQ pain? For 3 months now I have had symptoms of mild pancreatitis (feel epigastric pain mostly after eating or at night - sometimes on the left and at times on the right side, and radiating to my back), and all my results are clear (ultrasound, CT scan with contrast, MRI and MRCP, blood tests), so doctors see no cause for these pains and mention some kind of functional problem. Does that sound familiar to anyone?
Hello, the pain you have described is very similar to mine. And all of my results are also clear, ultrasound, MRI, blood tests, gastroscopy, colonoscopy. It has been going on for 15 years now, it started 7 years after my gallbladder had been removed, right after my first child was born. I was never fat, I don't eat fatty food, my colesterol is fine. The doctors told me I was healthy, but now I am sure to suffer from SOD type 3. All the symptoms are there, the pain that can be horrible, almost always at night, starts around midnight, and Buscopan can help, but every time , sometimes is so severe that I have to go to the IR. Now I take Buscopan every second night before going to bed, I eat almost nothing but bread, chicken soups, yogurt, bananas, and carots. Is there anything that can be done in order to prevent these attacks? I did noticed that during the summer I feel better.
Amitripline (prescibed drug) taken at night can help the Spincter of Oddi to relax...........it will take several weeks before you will get any relief. It does work but possibily not for everyone.
Good luck and report back.
Regards,
I take 30mg Amitriptyline each night but it is just for pain relief of the daytime pain I used to get, it is highly effective for me but did not stop the night time severe pain attacks. It is taken at night because it makes you drowsy. Am not aware of any muscle relaxing properties of Amitriptyline though.
Hi Hazel,
Do you still find Accupunture effective?
Yes! Doing it about once every 3 weeks to prevent the night time pain attacks. Works for me
Super cool! Before you went on the Amitriptyline, what were your symptoms? I have constant burning, pain, pressure, spasms, I can feel it in my back some. I have bile reflux and gastritis. I was just told I have SOD 3. Everything burns. I had my gallbladder out 7 years ago and 3 days later it all started. I hope you continue to do well!
Sounds like what I had. I could barely bring myself to eat because of the pain that I knew would follow. There was some small improvement when I started on 10mg of Amitriptyline and then less pain after I increased to 20mg and then about 6 weeks after I increased to 30mg the all day every day pain faded away to be only very occasional. Now if I do get some daytime pain I do manual self acupuncture at GB34 and it stops 😊. I took about 4 months to get to 30mg. If you are tolerating the side effects of the Amitriptyline (which wear off anyway) then you could talk to your doctor about getting there in less time.
Very best wishes
I suffer with SOD following gall bladder removal after I had my son 9 years ago. I had a low fat diet and small size so not sure how the problems started but since I have had it removed my digestive problems have been horrendous. I suffer daily with both bile and acid reflux (two different things although the doctor will usually just treat you for acid reflux which wont do anything for the bile reflux). Sometimes I can't even hold a sip of water down. I also have gastritis, IBS and SOD. One thing that might help is I discovered that opioids cause my SOD. So if I was suffering a migraine, had surgery or anything that required a strong opioid painkiller I would then get a worse pain attack of SOD. The opioids (oxycodone, codeine, tramadol, morphine) actually cause the spasms and pain. Has anybody else had this?
Hello, I am writing on behalf of my husband who has been unwell for the past five months. Please could anyone here who has been diagnosed with SOD say whether his symptoms & how they began sound familiar/likely/unlikely to be SOD?
Initially he was referred to a liver specialist after he became severely dehydrated whilst running. He had had upper, central abdominal pain for about two weeks before this point, which started when he felt a sharp pain 'like something snapped" but dulled almost immediately. The pain has remained constantly there, varying in severity and sometimes spreads across his upper abdomen and to his back. He also describes feeling exhausted and really 'out of it' or 'like he is sitting back in his head'.
When he feels at his worst he has episodes of extreme pain and disorientation plus a feeling of pressure in his neck on the left hand side and all he can do is lie in bed and concentrate on not being overwhelmed by it.
The episodes seem to be brought on by digestion, exertion and/or stress
He has had dozens of blood tests which have shown nothing other than a slightly raised bilirubin level. MRI & CT scans & an endoscopic ultrasound also came back clear.
There is a family history of colitis IBS and sarcoidosis and I think he suffers from undiagnosed IBS.
He has now been referred to a Gastroenterologist. SOD was mentioned a few times by different consultants, but one (a surgeon) even dismissed it as being made up!!? I guess this indicates how varying treatment of this condition can be.
Any thoughts or advice would be really appreciated as we are completely in limbo and appointments are months apart.
Thanks
I have actually found an up to date forum about SOD. I don't know where to begin as I had my gall bladder removed when I was 18. I am now 56 and I've battled with this almost all my life. It's only in the last few years that a doctor has even told me about SOD and unfortunately doesn't seem to offer much help, so I'm left trying anything that could help. I've kept food diaries,various pain killers, buscopan,amytriptoline(which I take for my back),you name it ,I've taken it.its as much a mystery now as it was then. The only thing I can say for sure , is that anything with codeine in ,brings on an attack. I've recently been given liquid morphine to try but recently during a bad attack I tried it and I think it aggravated the pain as it was much worse. I would like to ask if anyone who normally avoids codeine, if, you're already suffering an attack ,if taken then,does it help the pain or ,as morphine, aggravates it.
I have heard of some people suffering aggravated symposium after taking opiate analgesics, though not everyone does.
I keep up with my preventative acupuncture so I don't get the bad pain attacks anymore. When I had just started the acupuncture and still got some attacks, I just put the acupuncture needles in my legs at point GB34 and the pain stopped. It felt like some kind of miracle, I would urge you to give it a try in case it will work for you too. See link to my published paper further up in this discussion.
xx
*symptoms not symposium!
Beverly, one other unfortunate point is that SOD Type 3 is essentially, technically, equivalent to undiagnosed epigastric pain. This was pointed out to me by a nevertheless sympathetic consultant in the USA who was responding to my paper. He is right. There could be a range of things going on among all the people whose condition is classed as SOD Type 3. One guy who did a heap of research was convinced that his pain came from the remaining part of his cystic duct after laparascopic cholecystectomy. He convinced a surgeon to remove the inflamed remnant and felt better. Perhaps that is what's going on with some of us.
For me, finding a solution was more important than knowing for certain what was going on. So the try it and see approach is good for low risk options (and endoscopic sphinterotomy does not count as low risk, in my view).
Hi, Beverley
I ama 55 year old woman and I had my gallbladder out when I was 19. I have always had problems with my stomach since then. I would get attacks that I would call gallbladder attacks even I didnt have one. When I took codeine after my gallbladder was removed I would get what was like a gallbladder attack. I never took codeine again. I would say I was allergic to it. My mother who had her gallbladder out with me had the same thing. Never took codeine again. I actually met a dr. that told me most woman who have their gallbladder out are very sensitive to codeine. That what they call it. I just say I am allergic. I have started to suffer since 2014 with upper right quadrant pain after I eat. I just couldnt eat hardly anything the only thing i would eat was boiled chicken meatballs with white rice in them and a piece of baked chicken. I lost 30 pounds and it lasted a year. After the year it started to get better and over time I was eating everything again. It started on an off some really bad bouts of pain for a day or 2 and 2 weeks ago it started again full force. I had endoscopy, ct, mrcp, cat scan and everything was ok. I just went for a bunch of blood test to see how all the levels are and to check to see if there is enough enzymes in my poop that should come from the pancreas. I myself am searching for an answert to my constant pain. This is not living. I wish you luck but stay away from codeine.
Hi poor lady still suffering, for me the everyday pain that makes you barely eat was successfully addressed with 30mg Amitriptyline each night. The severe pain attacks are eliminated now by acupuncture. I am living a proper life! But I was anorexic and moping at home before I got sorted. Very best wishes xx
Hi,
After having my gallbladder removed 4 years ago I have been experiencing increasingly severe episodes of "gallbladder type" pain and vomiting. After much trawling through the Internet I firmly believe it to be SOD.
My doctor prescribed me tramadol for the pain which really helped, but switched me to dihydrocodeine which made it a lot worse! This has left me confused. Both are opioids, so why would one help an attack and another worsen it? It seems a bit strange to me.
I am being sent for a regular gastroscopy in 2 days' time, mainly for the vomiting I get alongside the upper right quadrant pain. WIll this show anything regarding the SOD or will I need a more specialised test?
Sorry for all the questions. I'm just scared, in a lot of pain, and sick and tired of being sick and tired. Speaking of which, is extreme tiredness another symptom? The past 6 months I have been utterly exhausted and struggle immensely to just get out of bed. I'd love to hear from anyone in the same miserable boat as me
Hi
I have had my GB removed in 2009 and it has been good since December last year then out of the blue I had exactly the same pain in upper abdomen just like before the gb was removed. I have had the camera down, blood test, and scan they can't find anything. I am restricted on food and so scared to eat as don't want to get the pain. The doctors is reluctant to do anything or even help. She said it is all in my head. Well I know when I have pain and when not. It is affecting my work and I have to have time of as can't function when I do have the pain. Wish now I never had it removed.
Hi
I have been in the same boat and had my GB removed in 2009 only started getting pain last year December. But it is getting worse. Had all sorts of test but they can't find anything. I find codine gives more pain not sure why. Also I have to be very careful on what I eat and what not. After reading about Sod I believe that is what I suffer from. It is getting the Dr to agree for the test.