If I knew Dr. House, I'd ask him
May 31, 2011 1:42 PM Subscribe
(medfilter) asking for my girlfriend who's beginning to think she's crazy after the 2nd emergency room visit in less than a year where she's been told there's nothing wrong. Her primary complaint is stabbing pain on her right side, right at her ribcage. Sometimes radiating into her chest. Pain can go from annoying (most of the time) to debilitating. She states that she's had some kind of pain there for most of her adult life. I know you are not her doc but I'm hoping that the symptoms might ring a bell to someone.
When the pain really intensifies (once or twice a year), it's usually preceeded by fatigue and achy joints (knees and hips mostly). The ribcage pain finally reduces in intensity on it's own after a few hours. Sometimes it returns a few times before finally reaching a tolerable/annoying level for a week or 2. Then it is just intermittently annoying for a few months until the next "attack".
Other data: she had really bad case of mono when she was in her early 20s (she's 38). She had her gall bladder removed 10 years ago which seemed to make no difference and no stones were found in that surgery but they said it was swollen and unhealthy.
She's had a complete gastro/intestinal workup (both ends) and a cardiologist said she was in fantastic health but had a slow heartbeat.
At this point she just wants a direction to go in. Has anyone here had a similar experience or perhaps a relative with a similar experience? It's starting to really make her anxious as yet another doctor tells her that besides the crushing pain, she's in perfect health. Thanks in advance and I hope this is appropriate for Ask.
When the pain really intensifies (once or twice a year), it's usually preceeded by fatigue and achy joints (knees and hips mostly). The ribcage pain finally reduces in intensity on it's own after a few hours. Sometimes it returns a few times before finally reaching a tolerable/annoying level for a week or 2. Then it is just intermittently annoying for a few months until the next "attack".
Other data: she had really bad case of mono when she was in her early 20s (she's 38). She had her gall bladder removed 10 years ago which seemed to make no difference and no stones were found in that surgery but they said it was swollen and unhealthy.
She's had a complete gastro/intestinal workup (both ends) and a cardiologist said she was in fantastic health but had a slow heartbeat.
At this point she just wants a direction to go in. Has anyone here had a similar experience or perhaps a relative with a similar experience? It's starting to really make her anxious as yet another doctor tells her that besides the crushing pain, she's in perfect health. Thanks in advance and I hope this is appropriate for Ask.
It's not good news, but I've been experiencing a sharp, debilitating pain in my right lower abdomen for almost two years now. I had my appendix removed because it "might" be the culprit (it wasn't), and have had every gastric workup under the sun.
My gastroenterologist hasn't given up, but he did say that some of these pains are just really difficult to diagnose.
posted by xingcat at 1:48 PM on May 31, 2011 [1 favorite]
My gastroenterologist hasn't given up, but he did say that some of these pains are just really difficult to diagnose.
posted by xingcat at 1:48 PM on May 31, 2011 [1 favorite]
The reason the ED is telling her there's nothing wrong with her is because from their perspective, there isn't. But that perspective is "Look, you're a 38-year-old otherwise healthy female with no remarkable history, negative labs, and no observable trauma, with unspecified pain not indicative of anything likely to kill you in the next few hours. Make an appointment with your GP and get the hell out of my ED. This person over here is fixin' to die on me."
I'm sure they're nicer than that, but really, that's the mentality of emergency medicine, or at least the emergency physicians with whom I'm well acquainted. They triage, and if they can figure out what's wrong with you--or even just the main organ system involved--they hand you off to someone else as fast as possible, because hey, here's a kid who broke his head doing something stupid, if we can't get this old lady's O2 sat above 90, she's in deep trouble, and the ambulance just brought in three people from a car crash, and who knows what's wrong with them. They don't do long term care, and if it's going to take more than a few minutes to diagnose and you aren't gonna die, you are almost by definition Not Their Problem.*
IANAP, but if it were me, I'd make an appointment with my GP and go from there. Whatver this is is obviously not a crisis, or she'd be dead by now.
*This is why people going to the ED instead of a GP is expensive. It's just the wrong place to get routine care. They aren't set up for it, and it reduces their ability to treat people who are having actual emergencies.
posted by valkyryn at 1:53 PM on May 31, 2011 [17 favorites]
I'm sure they're nicer than that, but really, that's the mentality of emergency medicine, or at least the emergency physicians with whom I'm well acquainted. They triage, and if they can figure out what's wrong with you--or even just the main organ system involved--they hand you off to someone else as fast as possible, because hey, here's a kid who broke his head doing something stupid, if we can't get this old lady's O2 sat above 90, she's in deep trouble, and the ambulance just brought in three people from a car crash, and who knows what's wrong with them. They don't do long term care, and if it's going to take more than a few minutes to diagnose and you aren't gonna die, you are almost by definition Not Their Problem.*
IANAP, but if it were me, I'd make an appointment with my GP and go from there. Whatver this is is obviously not a crisis, or she'd be dead by now.
*This is why people going to the ED instead of a GP is expensive. It's just the wrong place to get routine care. They aren't set up for it, and it reduces their ability to treat people who are having actual emergencies.
posted by valkyryn at 1:53 PM on May 31, 2011 [17 favorites]
Response by poster: ferociouskitty: the attacks are worst at night but don't seem to be related to the size or content of her dinner. Given that she doesn't have a gall bladder any more, her new GP believes it may be an inflamed bile duct but says that the GI docs should have found this.
xingcat: Thanks and I hope you and your GI doc get to the bottom of your issues.
valkryn: I honestly agree with you regarding ER visits and I wouldn't be asking this question if she hadn't also pursued diagnostic visits with her GP, a GI doc and a cardiologist. The 2 ER visits were both in the middle of the night and during some pretty serious pain. Because the pain was radiating to her chest, they treated her as a potential cardiac patient. That said, her pain tolerance is pretty high so when she can't stop crying and can't move and is afraid that she's going to empty her bowels because of the pain, I don't really have the answer outside of taking her to the ER to make sure it's not something "likely to kill you in the next few hours."
posted by screamingnotlaughing at 2:02 PM on May 31, 2011
xingcat: Thanks and I hope you and your GI doc get to the bottom of your issues.
valkryn: I honestly agree with you regarding ER visits and I wouldn't be asking this question if she hadn't also pursued diagnostic visits with her GP, a GI doc and a cardiologist. The 2 ER visits were both in the middle of the night and during some pretty serious pain. Because the pain was radiating to her chest, they treated her as a potential cardiac patient. That said, her pain tolerance is pretty high so when she can't stop crying and can't move and is afraid that she's going to empty her bowels because of the pain, I don't really have the answer outside of taking her to the ER to make sure it's not something "likely to kill you in the next few hours."
posted by screamingnotlaughing at 2:02 PM on May 31, 2011
The rib pain sounds alot like costochondritis, though the other symptoms aren't quite a match.
posted by kittydelsol at 2:04 PM on May 31, 2011 [2 favorites]
posted by kittydelsol at 2:04 PM on May 31, 2011 [2 favorites]
Try a different specialist. That's about all there is to do.
posted by valkyryn at 2:05 PM on May 31, 2011
posted by valkyryn at 2:05 PM on May 31, 2011
Best answer: Has she seen a rheumatologist? They tend to know a lot about thing that can cause joint pain, even conditions that aren't actually rheumatological in nature. In my experience a good rheumatologist is also about as close as any of us will get to seeing Dr. House, because they specialize in some hard-to-diagnose conditions that can manifest in strange and varied ways. They're also the appropriate specialist to diagnose lupus, which sounds like a reasonable thing to check for given her symptoms.
posted by vytae at 2:06 PM on May 31, 2011 [1 favorite]
posted by vytae at 2:06 PM on May 31, 2011 [1 favorite]
Best answer: Anecdata: This sounds a lot like what an ex boyfriend of mine experienced. He went to the emergency room three or four times in a year because of chest pain that was so severe he'd be throwing up, literally afraid he was dying. Cardiologist, GI doctors, and GP all told him he was a picture of health—except the GP mentioned that it could be (very real, very sucky) pain induced by anxiety and stress.
Not an easy fix, but that was it for him.
posted by peachfuzz at 2:08 PM on May 31, 2011
Not an easy fix, but that was it for him.
posted by peachfuzz at 2:08 PM on May 31, 2011
So, this sounds incredibly like my gallbladder woes. I went to the ER 7 times in the worst pain of my life, and was sent home and told "you have heartburn, deal with it". My doctor finally figured it out as a result of tests, and I learned that the ER is not really suited to solving that sort of issue much of the time. My grandfather had urged me to get it removed immediately, as my grandmother developed chronic pancreatitis as a result of gallstones.
posted by Zophi at 2:19 PM on May 31, 2011
posted by Zophi at 2:19 PM on May 31, 2011
Best answer: I have something very similar, with similar non-diagnosis. Best guess so far : sphincter of Oddi dysfunction. Hard to diagnose, and benign (outside of the pain) Osteopathy helps in my case, but I hear there are medical treatments available.
posted by bluefrog at 2:25 PM on May 31, 2011
posted by bluefrog at 2:25 PM on May 31, 2011
Well, my boyfriend was rushed to the ER several times last year with the same complaint. He was ultimately diagnosed with Primary Sclerosing Cholangitis (related to his already diagnosed Crohn's disease), which was/is causing constriction in the ducts of his gallbladder/liver, which causes pain that is somewhat similar to gallstones. He suggests getting an ERCP and maybe seeing a hepatologist.
Obviously YMMV - I think that kind of pain can be indicative of lots of things.
posted by stray at 2:28 PM on May 31, 2011
Obviously YMMV - I think that kind of pain can be indicative of lots of things.
posted by stray at 2:28 PM on May 31, 2011
Best answer: If I had a refund from every doctor who'd ever told me I was fine when I was not, I could probably have retired at 30. It is an incredibly demoralizing feeling to *know* there is something wrong, and have no one believe you. It's like they think "you're fine" is good news. It's not, it just means that whatever's wrong is getting worse while no-one looks for it.
I feel for your girlfriend. Doctors -multiple, expert, doctors- have failed me in MANY ways, and some of those failures of detection have been quite serious.
Give her a hug, tell her you believe her, and encourage her to keep looking for answers, even when every expert she consults tells her she's a hypochondriac. If her body says there's something wrong, there probably IS something wrong. Even if it turns out to be relatively benign (like my having an extra bone in each foot), being in pain is scary and frustrating & she deserves to be given an explanation.
posted by Ys at 2:29 PM on May 31, 2011 [5 favorites]
I feel for your girlfriend. Doctors -multiple, expert, doctors- have failed me in MANY ways, and some of those failures of detection have been quite serious.
Give her a hug, tell her you believe her, and encourage her to keep looking for answers, even when every expert she consults tells her she's a hypochondriac. If her body says there's something wrong, there probably IS something wrong. Even if it turns out to be relatively benign (like my having an extra bone in each foot), being in pain is scary and frustrating & she deserves to be given an explanation.
posted by Ys at 2:29 PM on May 31, 2011 [5 favorites]
I know someone who had mono years ago and has occasionally experienced the spleen pain associated with that diagnosis. It can get severe, but she hasn't been re-tested for mono. I have no idea if mono is something that can "flare up" later, but it seems as if that's what's happening in my friends case. Has your gf checked her spleen for swelling?
posted by toastedbeagle at 2:32 PM on May 31, 2011
posted by toastedbeagle at 2:32 PM on May 31, 2011
One might also ask one's doctor about gout.
posted by no relation at 2:39 PM on May 31, 2011
posted by no relation at 2:39 PM on May 31, 2011
I'm not a good armchair diagnoser, but depending on your gf's ethnicity, I'd look into Porphyria as a possibility.
posted by sciencegeek at 2:43 PM on May 31, 2011
posted by sciencegeek at 2:43 PM on May 31, 2011
Best answer: I have something pretty similar - five and a half years ago, I suddenly had stabbing pain in my spine; it is still there today and I've learned to live with it. A month before that happened, I went to the ER with intense pain that felt like it was in the appendix region. It turned out to be a burst ovarian cyst and intense endometriosis.
I also had experienced fatigue and painful joints - knees, hips, shoulders, small joints in hands/feet - for several years before that. All the doctors found nothing...until I went to a teaching hospital and had a top rheumatoid specialist do a work up. They finally diagnosed SLE/seronegative rheumatoid arthritis in 2006. But...the back pain doesn't seem to be associated with it, as far as they can tell.
Immune disorders are notoriously hard to diagnose and this screams immune to me.
Here are some questions I'd ask:
-is the pain equal on both sides or does it tend to be more focused on one side? Bilateral joint problems speak more to a inflamation/rheumatological problem, whereas unilateral could be coincidental.
-have you had rheumatoid factor or ANA checked (blood work)?
-do you have any bone abnormalities in your joints? If so, that suggests rheumatoid as well.
-does it have any correlation with stress or sleep (or lack thereof)?
Also, keep in mind that often chest pain is actually referred pain from the spine or internal organs. It's likely that the real problem is in the spine. Though severe endometriosis can cause diffuse pain too.
Have her document the pain - when it comes, for how long, how it feels, where it is hurting most, whether it gets worse/better with ice or heat, if it hurts to press on it, if lying down/sitting up aggravates it, if particular foods/drinks make it better or worse, etc. The more information a doctor has, the better. Also, see if the pain corresponds to her menstrual cycle. If it's endo, it should be worse during/after her cycle.
And keep fighting to see specialists, especially one at a prestigious teaching university. Push for MRI/CT/x-ray scans. Keep redoing blood work. Don't take no for an answer. Get some pain meds for when it is horrible. Don't let the doctors make her feel crazy - if they suggest that, change doctors.
Lastly, this is for you, not her: Believe her. Even if it happens for years and every doctor you see thinks she's exaggerating or making it up. If you believe her and her family believes her, that's huge. Even when she doesn't ask, bring her something to drink, get her a heating pad, bring her flowers, do something to show her that you support her.
When you fight, NEVER bring up any doubts about her pain. Don't let yourself go there. Getting through a chronic illness can be a living hell, but having a supporting partner makes all the difference.
Memail me (either of you) any time. I've been through it and it is SOOOO hard. I admire you for standing with her and I pray she gets this figured out soon.
posted by guster4lovers at 2:54 PM on May 31, 2011 [5 favorites]
I also had experienced fatigue and painful joints - knees, hips, shoulders, small joints in hands/feet - for several years before that. All the doctors found nothing...until I went to a teaching hospital and had a top rheumatoid specialist do a work up. They finally diagnosed SLE/seronegative rheumatoid arthritis in 2006. But...the back pain doesn't seem to be associated with it, as far as they can tell.
Immune disorders are notoriously hard to diagnose and this screams immune to me.
Here are some questions I'd ask:
-is the pain equal on both sides or does it tend to be more focused on one side? Bilateral joint problems speak more to a inflamation/rheumatological problem, whereas unilateral could be coincidental.
-have you had rheumatoid factor or ANA checked (blood work)?
-do you have any bone abnormalities in your joints? If so, that suggests rheumatoid as well.
-does it have any correlation with stress or sleep (or lack thereof)?
Also, keep in mind that often chest pain is actually referred pain from the spine or internal organs. It's likely that the real problem is in the spine. Though severe endometriosis can cause diffuse pain too.
Have her document the pain - when it comes, for how long, how it feels, where it is hurting most, whether it gets worse/better with ice or heat, if it hurts to press on it, if lying down/sitting up aggravates it, if particular foods/drinks make it better or worse, etc. The more information a doctor has, the better. Also, see if the pain corresponds to her menstrual cycle. If it's endo, it should be worse during/after her cycle.
And keep fighting to see specialists, especially one at a prestigious teaching university. Push for MRI/CT/x-ray scans. Keep redoing blood work. Don't take no for an answer. Get some pain meds for when it is horrible. Don't let the doctors make her feel crazy - if they suggest that, change doctors.
Lastly, this is for you, not her: Believe her. Even if it happens for years and every doctor you see thinks she's exaggerating or making it up. If you believe her and her family believes her, that's huge. Even when she doesn't ask, bring her something to drink, get her a heating pad, bring her flowers, do something to show her that you support her.
When you fight, NEVER bring up any doubts about her pain. Don't let yourself go there. Getting through a chronic illness can be a living hell, but having a supporting partner makes all the difference.
Memail me (either of you) any time. I've been through it and it is SOOOO hard. I admire you for standing with her and I pray she gets this figured out soon.
posted by guster4lovers at 2:54 PM on May 31, 2011 [5 favorites]
Is there any correlation with her menstrual cycle? I'm wondering--because she isn't getting sicker, she didn't have it as a kid, and the gastro hasn't found anything--if it's ovulation pain, or mittleschmerz.
Has she ever used hormonal contraceptives, and if so, did it make it better (or worse)?
Something to rule out, anyway.
posted by thinkingwoman at 3:13 PM on May 31, 2011
Has she ever used hormonal contraceptives, and if so, did it make it better (or worse)?
Something to rule out, anyway.
posted by thinkingwoman at 3:13 PM on May 31, 2011
I had costochondritis last fall (aka: I sprained my chest?!) and this doesn't sound like that, although I guess it's possible that strain from another issue could have aggravated the cartilage.
FWIW, the consulting nurse at my HMO told me to go to the ER when that happened, because it's chest pain and I have family history of heart attack. I totally sympathize with the frustration of that experience. Good luck to you both.
posted by epersonae at 3:15 PM on May 31, 2011
FWIW, the consulting nurse at my HMO told me to go to the ER when that happened, because it's chest pain and I have family history of heart attack. I totally sympathize with the frustration of that experience. Good luck to you both.
posted by epersonae at 3:15 PM on May 31, 2011
OMG. This is exactly me! I am laying facedown on my livingroom floor as its the only position that helps at all. My pain is in my right side below my rib cage and below my shoulder blade on my back. It started at 7pm today, before dinner, when usually the pain is at night. Sometimes just annoying where it is too painful to sleep but I can still talk through it. Othertimes it is a wall of pain that feels like labour where I am sure that I am dying. My doctor thinks its "gas" and sometimes 4 gaviscon stops the wall of pain, othertimes, nothing. For a while I thought it happened when I ate tomato sauce but today no tomato sauce so who knows? Please message me if your girlfriend ever finds out what the cause of her pain is.
posted by saradarlin at 4:50 PM on May 31, 2011
posted by saradarlin at 4:50 PM on May 31, 2011
Endometriosis could be it, but you can have gallstone issues, pain, and problems even without your gall bladder.
posted by jgirl at 6:09 PM on May 31, 2011
posted by jgirl at 6:09 PM on May 31, 2011
Nthing osteopathy or similar here. If you assume the internal medicine specialists are capable (and they must have checked liver enzymes etc.) why not think about myofascial issues? Remember that the body has a lot of internal muscles and fascia and they might be 'out of whack'.
posted by Eltulipan at 8:58 PM on May 31, 2011
posted by Eltulipan at 8:58 PM on May 31, 2011
Best answer: Haven't read whole post so if this has already been done, oops!
First off, she's not crazy.
Doctor's aren't gods. And they don't have a lot of answers. Most aren't going to let on that this is the case. You're not going to hear many say, "I don't know what this is."
A friend of mine believes that when its called a "syndrome" or "disorder" it's a sign that the doctors don't really know what it is.
I would suggest not to get lost in "what is it"
Instead, get tests to see what it isn't.
A good paramedic once told me that if a doctor can't find anything it's a good sign....period.
Obviously, get a 2nd/3rd opinion if you can.
If nothing is found then it may be somatic. I would suggest yoga therapy, bodywork or similar modality. If anything, she would be taking it into her hands to do something and not be in the "aura" of a doctor's decision, whatever that may be. She doesn't have to live with it. Keep turning over stones until she finds something that works.
Good luck.
posted by goalyeehah at 10:21 PM on May 31, 2011
First off, she's not crazy.
Doctor's aren't gods. And they don't have a lot of answers. Most aren't going to let on that this is the case. You're not going to hear many say, "I don't know what this is."
A friend of mine believes that when its called a "syndrome" or "disorder" it's a sign that the doctors don't really know what it is.
I would suggest not to get lost in "what is it"
Instead, get tests to see what it isn't.
A good paramedic once told me that if a doctor can't find anything it's a good sign....period.
Obviously, get a 2nd/3rd opinion if you can.
If nothing is found then it may be somatic. I would suggest yoga therapy, bodywork or similar modality. If anything, she would be taking it into her hands to do something and not be in the "aura" of a doctor's decision, whatever that may be. She doesn't have to live with it. Keep turning over stones until she finds something that works.
Good luck.
posted by goalyeehah at 10:21 PM on May 31, 2011
Best answer: I sympathise with your girlfriend.
One of the worst things to hear from a doctor is "There's nothing wrong."
Other things I don't like hearing is "I've never heard of that", along with "That's really strange, I've never seen anything like that before", and "Oh, that doesn't exist".
Hopefully she doesn't get any of the latter phrases. Thoughts with you both.
posted by ysabet at 10:35 PM on May 31, 2011
One of the worst things to hear from a doctor is "There's nothing wrong."
Other things I don't like hearing is "I've never heard of that", along with "That's really strange, I've never seen anything like that before", and "Oh, that doesn't exist".
Hopefully she doesn't get any of the latter phrases. Thoughts with you both.
posted by ysabet at 10:35 PM on May 31, 2011
Best answer: Sounds like a friend who had stones in her bile duct that caused her "gallbladder disease"symptoms post gallbladder-removal...but could be so very many things.
Nthing the problem being "treat the disease, not the person" mentality of many physicians.
posted by desuetude at 12:10 AM on June 1, 2011
Nthing the problem being "treat the disease, not the person" mentality of many physicians.
posted by desuetude at 12:10 AM on June 1, 2011
A friend of mine believes that when its called a "syndrome" or "disorder" it's a sign that the doctors don't really know what it is.
In the case of the former, this is quite frequently true. More than that, it's a name they give to collections of symptoms when not only are they not sure what's wrong, but they're not convinced that anything necessarily is wrong. To be classified as a "syndrome," there must simply be a series of symptoms that have shown up together a lot. That's it. No cause of the symptoms is required, and indeed, identifying the cause of the symptoms will frequently result in re-diagnosis. IBS? CFS? One is only given such a diagnosis when the doctors have determined that there isn't anything identifiably wrong with you, and if they do figure it out, they'll give you a different diagnosis and treat it. Even AIDS was considered mysterious until HIV was identified, and Down Syndrome was considered idiopathic until trisomy 21 was identified.
"Disorder," on the other hand, is a bit more neutral, and is frequently used to distinguish an actual disease from a simple abnormality. In contrast to "syndromes," however, "disorders" are generally associated with identifiable organic causes.
posted by valkyryn at 2:35 AM on June 1, 2011
In the case of the former, this is quite frequently true. More than that, it's a name they give to collections of symptoms when not only are they not sure what's wrong, but they're not convinced that anything necessarily is wrong. To be classified as a "syndrome," there must simply be a series of symptoms that have shown up together a lot. That's it. No cause of the symptoms is required, and indeed, identifying the cause of the symptoms will frequently result in re-diagnosis. IBS? CFS? One is only given such a diagnosis when the doctors have determined that there isn't anything identifiably wrong with you, and if they do figure it out, they'll give you a different diagnosis and treat it. Even AIDS was considered mysterious until HIV was identified, and Down Syndrome was considered idiopathic until trisomy 21 was identified.
"Disorder," on the other hand, is a bit more neutral, and is frequently used to distinguish an actual disease from a simple abnormality. In contrast to "syndromes," however, "disorders" are generally associated with identifiable organic causes.
posted by valkyryn at 2:35 AM on June 1, 2011
Along with considering all the excellent suggestions above, read this Jane Brody article about hernias as a hard-to-diagnose cause of intense pain in women:
In women, hernias may be hidden agony It appeared in the New York Times a couple weeks ago, but this link is to a reprint of the article without the paywall.
posted by artistic verisimilitude at 6:14 AM on June 1, 2011
posted by artistic verisimilitude at 6:14 AM on June 1, 2011
This thread is closed to new comments.
posted by ferociouskitty at 1:46 PM on May 31, 2011 [1 favorite]