Really severe pain in hips/back: What sort of doctor?
April 30, 2015 11:50 AM   Subscribe

My 41 year-old sister has been experiencing intense pain for the past five weeks. She has seen a number of doctors, with no clear diagnosis and no reduction in pain. My question is, exactly which kind of doctor should she see, and are there any particular questions she should ask.

I know that any question of this kind is best answered by a doctor. Which type of doctor, if not an orthopedic surgeon, would you go to to address this? And, if you were my sister, what sort of questions do you think could lead to a reduction in pain?

What she's done so far:
She has seen her primary care doctor, an orthopedic surgeon, and a pain specialist. They prescribed steroid shots and Norco, which have not helped. The pain specialist suggested physical therapy, which seems impossible to her because of the pain.

In between these visits, she has gone to emergency rooms four times, and received a morphine shot, a patch for pain, and another prescription for pain (Mobic), none of which have made much of a difference. None considered admitting her. X-rays have discovered some scoliosis and arthritis of the spine.

An MRI ordered by the primary physician was denied by the insurance company.

On Monday, she has an appointment with another orthopedic surgeon.

Her symptoms:
She feels a constant, throbbing pain centered on spine, hips, and stomach, along with stomach spasms. She has pain in the top 5 inches of her leg. The pain is especially bad in the morning. It has her in tears, and she says that it is equivalent to the pain of a very bad toothache -- a 10 on a scale of 1 to 10 first thing, but as low as a 6 after moving around for a while. She can't lie down, can't cross her legs, and if she trips, it is so painful that it feels, she says, like her nerves are exposed.

She thinks it may be related to a very hard fall she took in the winter -- there were no more recent injuries.

Two of the doctors seemed certain this was sciatica, yet the pain seems different from that pain. Her hope and mine is that the next appointment, this time with a specialist, will yield a prescription for an MRI that will be approved. She's in despair, and worried. The pain has made it really impossible to do her job. (She's a gardener.) I don't know why it is so hard for her to find help, but I imagine that, to some doctors, she seems like a drug seeker. She's not, of course.

She lives in northeastern Ohio, near Cleveland. Throwaway email:

Thanks for any advice -- this is terrible for her, and I don't know how else to help her now.
posted by anonymous to Health & Fitness (13 answers total) 3 users marked this as a favorite
She really needs imaging. My primary care doctor hemmed and hawed and finally got a cat scan done on my back and it turned out to be metastatic cancer.

So she needs to keep on them.

Good luck. I hope that it is a good result.
posted by Danf at 12:02 PM on April 30, 2015 [6 favorites]

This is rough. Since she has some mobility (and the pain seems to decrease after she gets moving in the morning), I would actually give physical therapy a shot. Although a different situation, I had debilitating back pain that was helped tremendously by physical therapy when other solutions didn't work. If you find someone good, they are not just going to randomly give her exercises she is incapable of doing -- they will work with her to figure out what is both physically possible and creating an improvement in her pain level. Worth a shot, anyway.
posted by rainbowbrite at 12:02 PM on April 30, 2015 [1 favorite]

Seconding the need for imaging. A friend had very similar pain, also thought it stemmed from a fall the year before, and it ended up being Hodgkins Lymphoma. I hope she can get a scan sooner rather than later, just to be sure.
posted by thegreatfleecircus at 12:41 PM on April 30, 2015 [4 favorites]

My experience with insurance is that you have to take ALL recommendations, no matter how nonsensical they seem. So if physio is on offer, take it. That way you can build a medical record that will help each new doctor you see. Also it shows that insurance company that you are compliant patient and are interested in resolution rather than just pain drugs.
posted by Gor-ella at 12:47 PM on April 30, 2015 [1 favorite]

Okay, when something similar happened to me (twice, alas, to the extent that I could neither stand, sit, nor lie down without intense pain untouched by any pain meds) the thing that helped basically immediately was big doses of prednisone, which takes down the inflammation. That makes the pain stop or go way, way down, so then you can manage the physio, which is what then actually helps make the problem go away. Have her ask specifically about prednisone.

Later, when I was in physio, the people there asked me to ask my physician about an MRI. He said he wanted to avoid it since I was feeling better -- the rationale being to avoid the radiation if/when it's not needed.
posted by BlahLaLa at 1:04 PM on April 30, 2015

I don't want to add to the fear thing here, but this isn't an unusual presentation for ovarian or uterine cancer. If she's having any female problems - or even if she isn't - I'd recommend an appointment with a GYN. She must have a scan - doing physical therapy without knowing what's going on inside is just stupid and asking for trouble. Has she had any fever or shaking chills? I lost a good friend a few years ago - he was 38 and in good health - with a MRSA infection; he had terrible pain in his left hip and went to the ER, where they did an x-ray, told him he had some arthritis, assumed he was drug seeking and sent him home with a handful of pain pills. That was on Wednesday night. He took the pills on Thursday and sometime Thursday night they ran out. I saw him on Friday morning at about 9:00 when the EMTs were getting him off to the hospital - he'd called because he just couldn't stand the pain anymore. He died that night at around 8:00 from an overwhelming systemic infection they just couldn't stop. The blood tests on admission showed no drugs except those prescribed.

Pain at the level your sister is experiencing is serious. Take her back to the ER and flat-out demand that someone get an imaging study done - that's what I'd do. Sometimes it makes a lot of difference if the person returns to the ER and brings someone to fight for them. If the insurance company won't pay for the scan, demand that it be done anyway - the odds are very good that the answer will be there and THEN the insurance company will end up paying for the study, along with the treatment. Even if they don't, the hospital will take payments or even write the bill off if she absolutely can't pay it. Point is that her pain level is high enough that it requires diagnosis - she could be in some very deep trouble.

It gets my goat that people die all the time from medical neglect - sent home from the ER without an answer or discharged from the hospital without being anywhere near ready for discharge, or just bad care from outside physicians - but there's no accountability! No one knows that 10 people died this month from neglect at this ER or 5 patients of Dr. X's have died from lack of diagnosis and treatment in the last 6 months - each family grieves on their own and have no idea that they're oftentimes part of a pattern of poor care.

Another thing I'd mention for sure is this: Don't connect the pain she's having now to an old injury or to anything else - that just directs the physician onto a path that may not be the correct one at all, but nearly every doc will jump right on it. As far as the pain letting up a bit after she's up and moving around, that's classic for osteoarthritis - another easy diagnosis which may have nothing to do with this at all; in fact, the idea that osteoarthritis would suddenly escalate into such intense pain is pretty doubtful - but again, it directs the doc, and that's no good. I had a compression fracture of one of my thoracic vertebrae - don't remember which one - and it took at least a year before the pain was such that I wasn't constantly aware of it. So it got better for maybe six months - and then I got a heckuva lot of pain in about the same area - pain that just wouldn't let up. Of course I told the docs I'd had the compression fracture in that area so they just assumed that was the source of it. Finally one night it was too extreme and I went to the ER - where they found my gallbladder was full of stones, which was where my pain was coming from! No more gallbladder, no more pain.

Check for fever - if there's even a low fever, it's important. If there are chills or sweating attacks, that information is very important - and information about fever is something they DO need to know.

And don't forget about a GYN - ovarian cancer is the most overlooked cancer there is because its early symptoms are brushed off and ignored - by the time it's diagnosed it's usually advanced - and the location of her pain, including her leg, is a common complaint.

Please let us know how she comes out. I wish her well.
posted by aryma at 1:28 PM on April 30, 2015 [10 favorites]

Just rechecked the ovarian cancer symptoms and "unexplained hip, back and leg pain, often misdiagnosed as sciatica" is one of the top symptoms that sends women with this type of cancer to the doctor for help.
posted by aryma at 1:32 PM on April 30, 2015 [6 favorites]

Yeah I'm sorry, I don't want to pile on the "scary cancer" commentary, but I do know someone who had unexplained pain (hip I think) and it turned out to be cancer. She needs to push for imaging.
posted by radioamy at 3:22 PM on April 30, 2015

Note that imaging ordered as part of an ER visit is somehow exempt from the insurance prior-authorization requirement. If the ER doc orders it, it will be done. The request/negotiation aspect of insurance coverage largely applies to outpatient studies only.

Also please note that the typical MRI study does not use radiation, the exception being a study with gadolinium (requires an IV, which a regular MRI does not). MRIs are not usually refused by insurers because they are concerned about a patient's radiation exposure, rather it's their cost. MRIs cost much more than Xrays or CT's, both of which do use radiation.

Just reread aryma's comment above. My mom had ovarian cancer, and though it didn't present with hip pain (GI/bowel symptoms in her case) it is a disease that is often missed because it presents in many ways that are often difficult to assess, and patients are often shuffling between specialists because of the secondary symptoms. My mother spent 2 months being ruled out for colon cancer before her GYN got involved and ordered an abdominal CT with and without contrast. If cancer is suspected, a study with contrast is the only type I've ever seen ordered. And though my mom is an "n" of 1, she survived for more than 5 years after diagnosis, and died of something else entirely.
posted by citygirl at 3:38 PM on April 30, 2015 [1 favorite]

I don't think going back to the ER demanding they diagnose what is probably a complex condition is likely to result in much.

You didn't mention what blood work she's had done. There are two very common, very cheap tests that could help figure out where to look next: ESR and CRP. They are systemic markers for inflammation.

-- a 10 on a scale of 1 to 10 first thing, but as low as a 6 after moving around for a while. She can't lie down, can't cross her legs, and if she trips, it is so painful that it feels, she says, like her nerves are exposed.

This is a hallmark of the Spondylarthropathies. Worse in the mornings / resting, improved with movement. I can vouch for this personally. It's an utterly debilitating pain through the abdomen, pelvis, hips, essentially the whole "girdle" area. Any movement first thing in the mornings was near impossible. But once up and moving, it moderated enough to where I could get around with a walking stick.

A Rheumatologist would handle this.

Anecdotally, I had a dear friend that had just been diagnosed with stage 4 colorectal cancer at the onset of my condition. She'd experienced a ton of similar sounding symptoms that were, VERY inappropriately, poo-poo'd by her GP. Lots and lots of lower back pain. Because of that, I was scared shitless I was dealing with something just a serious and I probably put myself through a lot more anxiety than I needed to.

I ended up at a Rheumatologist. She actively investigated cancers along with the inflammatory diseases, which included a ton of blood work and a ton of imaging of various modalities. What got me through the initial crisis was a round of high-dose oral steroids (not a normal "taper").

My younger brother and sis-in-law helped me through the early phases of my condition. Their support was essential. I hope your sister is able to find a strong medical advocate and get some relief.
posted by michswiss at 3:56 PM on April 30, 2015

Nthing that she push for imaging. Ovarian cancer is rare but should not be ruled out. If an MRI or ultrasound absolutely will not be approved, a CA-125 blood test might be worth considering. It usually costs under $100. Unfortunately it's not a definitive test; it won't catch all cases of ovarian cancer. But if the results are abnormal, the insurance company will find it hard to deny a Doc's order for imaging. (IANAD or an insurer, YMMV, etc. Just speaking from my mom's experience with the medical establishment after her diagnosis.)

Again, there are other likely explanations for your sister's pain. This is coming at you from deep in worst-case-scenario country. Best wishes to both of you in finding an answer.
posted by Lycaon_pictus at 10:48 PM on April 30, 2015

It sounds like sciatica to me. I finally went to a neurosurgeon and he ordered an MRI. I had severe arthritis in lower spine, with stenosis. The first surgery did not fix it. Three years and a divorce later a second surgery by same doctor fixed it. Doctors and insurance companies beat around the bush because studies show around 80%+ back pains go away without treatment after a length of time. Gardening will never give it a chance to improve. It could be a slipped/herniated disk that will fix itself. I got so severe I could not use one of my legs.

My problem originated from a hard fall on my 15 years earlier that cracked 3 vertebrae. They healed by then arthritis moved in. When I fell on my butt from an ATV, it only hurt for around 4 days and I never went to the doctor until 6 months later when severe pain erupted. X-ray revealed the problem.
posted by nogero at 9:17 AM on May 1, 2015

I don't necessarily think that multiple doctors are always the answer...has she been back to the ortho after not seeing improvement from his treatment? If yes and he dismissed her, fair enough to move on but if he's a decent doctor, he'll continue working with her and "troubleshooting" for lack of a better term. The ortho doc I work for, upon this patient returning, would likely go ahead with advanced imaging, send to PT, prescribe a fluoroscopic guided steroid injection into places he can't get to in the office, or perhaps refer for neuro testing. There are other options if the doctor hasn't given up on her.
posted by kattyann at 7:46 PM on May 1, 2015

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