Serious joint pain, no diagnosis
November 27, 2013 7:39 PM   Subscribe

Does anyone have any experience with persistent, unexplained joint pain in multiple joints?

I'm writing out of concern for a loved one.

My girlfriend has had persistent, moderate-to-severe pain in many of her joints for about 6 months: left knee, right ankle, right wrist, jaw, chest wall. We're not totally sure, but the onset seemed to coincide with a knee injury that still hasn't completely healed.

She's seen her pcp, a rheumatologist and an infectious disease specialist, all of whom appear to be stumped. She'd had MRI's and ultrasounds that reveal nothing unusual. She's been tested for everything from rheumatoid arthritis to lupus to chlamydia with negative results (though the rheumatologist wanted to prescribe some prohibitively expensive wonder drug with serious side effects in spite of her symptoms not matching key symptoms of RA).

She's had blood work and urine tests, and tests on synovial fluid. At one point, her western blot test seemed to indicate a bacterial infection, but this result was deemed inconclusive. The doctors seem particularly resistant to diagnoses such as lyme disease (we live in California where it isn't common and she has no rash). However, her symptoms seem more similar to a spirochete infection than anything else proposed.

Important note:

She asked her PCP to prescribe antibiotics, and he agreed; first doxycycline, then amoxicillin. Both times, she saw immediate, dramatic improvement in the first week followed by a slide back into persistent pain. An anti-inflammatory drug she was on briefly seemed to make things much worse, and she stopped taking it.

The pain ebbs but never really goes away, and it's seriously affecting her quality of life.

Does this sound familiar to anyone? We're growing increasingly alarmed and the experts haven't been very helpful.
posted by ducky l'orange to Health & Fitness (22 answers total) 3 users marked this as a favorite
Could she possibly have been bitten by a tick? Long shot, I know.
posted by windykites at 7:57 PM on November 27, 2013

Sorry, missed the part where you'd already mentioned Lyme.
posted by windykites at 8:03 PM on November 27, 2013

I have persistent "traveling" joint pain due to my Crohn's disease. I am afraid I'll be little to no help in diagnosing your friend. I just wanted to share my empathy that damn, it sucks. A lot of relief for me came from taking Humira. They diagnosed me with non rheumatoid arthritis secondary to Crohn's. By suppressing my immune system, the joint pain is greatly reduced which reduced my reliance on painkillers. Humira is a serious drug, with potentially serious side effects, but I'm willing to take it so I can do fun things like sleep, and walk, and move and stuff. There is a plan by the drug maker that makes it go from super expensive to five dollars a month, so if by chance that's what her docs recommend, don't worry about the expense, everybody qualifies for it.

Acupuncture by a skilled practitioner (you know when you find one, but one trained in Chinese traditions is a good start) helps a lot too. And if she's willing to try it, mindfulness meditation for pain is great to change your relationship with pain. Check out Jon Kabat Zinn for a great introduction to mindfulness. His CD about pain is awesome.

If by any chance, that wonder drug is Humira, feel free to memail me if she'd like more details about how it affects the "well I hurt all over but we're not quite sure why" pain and my experience.
posted by gilsonal at 8:04 PM on November 27, 2013 [1 favorite]

Person with two decades of chronic pain here, and lots of experience with medical dead-ends.

You mention a knee injury possibly coinciding with the start of this, but you don't mention any physical therapy, occupational therapy, or other hands-on treatment. If your girlfriend is having pain from the way her body is trying to accomodate that injured knee, physical therapy might really help (though the pattern of right-side joint pain doesn't fit with my own experience of how that can happen).

The other thing is that there are doctors who specialize in pain. My own chronic pain improved tremendously a couple of years ago when I started seeing a doctor who was experienced working with people with hard-to-treat pain, and who was super-knowledgeable about pharmocology and how different meds, including some off-label uses, can be helpful for people with problems like mine.

On the other hand: I recently experienced a long bout of joint paint and constant all-over flu-ish body aches that resolved when I went off a certain medication. I've had several very bad experiences with medication side effects, and doctors often aren't aware of side effects, or don't think of the possibility when trying to diagnose problems. I had one doctor tell me that a medication couldn't be causing an effect I was having, when that effect was listed in the paperwork that came with the meds. So that's something I always think of when I hear questions like this.

Good luck.
posted by not that girl at 8:05 PM on November 27, 2013 [1 favorite]

Does she have an elevated C-reactive protein or erythrocyte sedimentation rate?

Does she have any other symptoms besides joint pain? e.g. GI upset, pain with urination, eye problems (blurry vision, sensitivity to light)?

Does the pain improve with movement/exercise?

Does she take any other medications? Supplements?
posted by telegraph at 8:06 PM on November 27, 2013 [2 favorites]

How terrible! I'm so sorry that your girlfriend has such pain. So incredibly stressful.

Not to add another doctor to the mix, but how about an infectious disease specialist. I saw someone at UCLA about 10 years ago, it's a great clinic.

The knee could be a red herring. A pain clinic (UCLA I'll bet has one) might help figure out who to see next. They can help pin point whether you need a GI specialist, a neurologist, etc.

When I had chronic pain that went undiagnosed for too long, I started seeing an acupuncturist who helped my pain and related anxiety. So 2nd the acupuncture.
posted by mamabear at 8:09 PM on November 27, 2013

You said they did Western blot, but did they test for the Lyme DNA to completely rule it out?

"If Lyme disease still suspected or patient immunocompromised – order Borrelia spp DNA by PCR"

(Definitely not a doctor here - just been an active part of trying to help someone else - and myself - figure out somewhat similar, also frustrating, issues.)
posted by stormyteal at 8:34 PM on November 27, 2013

I hate to say this but I was talking to a friend today and this could be her description of her experience with Lyme-- up to and including the doctors being extreeeeemely wary of diagnosing and treating it as a chronic disease. If there's a chronic Lyme support group in your area, you might want to try reaching out to them and asking for Lyme-friendly doctors who might be more willing to treat it as a serious possible and confirm either way.
posted by WidgetAlley at 8:36 PM on November 27, 2013

Was the knee injury an open wound?
posted by bkeene12 at 9:08 PM on November 27, 2013

I've heard of leukemia causing pain in multiple joints but I presume the blood test would have picked that up if she had leukemia? I'm not a doctor.
posted by Dansaman at 9:09 PM on November 27, 2013

IANAD. I think it would be extremely helpful if she started a comprehensive health diary. Create a grid in Excel, with positions for *detailed* diet entries - composition of meals, spices, quantity, as well as time of each meal, exercise with details, all medication including OTC including dosages and time of taking, supplements if any, pain occurrence, intensity and length, sleep time (for circadian rhythms) and length, stress levels experienced, health conditions, and anything else that might be related or a factor; you should also enter into it all the medical tests you have and the results, including routine blood tests broken down by each individual result. This should be a daily diary to be filled each and every day.

I know that this sounds like a lot and a huge chore and time sink. However, once you've established the grid, with time, it will become second nature and quite quick to fill out, not taking more than a handful of minutes per day.

This btw. should be done by everybody IMHO, regardless of health status. This is a great resource should something happen health-wise at any given moment - you have a comprehensive and extremely accurate record, which can be searched for patterns and take the guess-work out of relationships and speculation about medical conditions and possible factors that might or might not interact with it. It is also a great resource when you meet with your physician, as you can have a complete record of your health history.

When something like this happens, you can now speak to a doctor with assurance about what happened, when, and what the conditions surrounding it were, as well as spot correlations and patterns yourself. It obviously cannot help as much at this precise moment, but it is never too late to start, and can be helpful even with this condition going forward. The sooner she (or anybody!) starts, the sooner she can reap the benefits. When trying to nail down elusive problems, this can be hugely helpful. Best of luck!
posted by VikingSword at 9:33 PM on November 27, 2013 [2 favorites]

If I were facing a mysterious medical problem like this, I'd set up consultations at the Mayo Clinic. They specialize in difficult to diagnose ailments and their services are pretty top notch (I say this as a physician myself). I've also been treated there personally. Traveling for specialty medical care requires money and it's not for everyone, but just thought I'd throw that idea out there.
posted by treehorn+bunny at 9:51 PM on November 27, 2013 [2 favorites]

The places she's having pain are consistent with tender spots associated with fibromyalgia. It's hard to diagnose, but shares some of the same symptoms as other auto-immune problems like Lyme. Did her rheumatologist check for fibro?
posted by Room 641-A at 10:08 PM on November 27, 2013 [3 favorites]

Does she have hypermobile joints? Has she dislocated joints in the past (shoulder, knee, etc.)? If there's a yes in there, consider Ehlers-Danlos syndrome.
posted by kuanes at 3:12 AM on November 28, 2013 [3 favorites]

Is she obese? I am, and I have days when everything hurts to the extent that I'm just immobilized and grumpy all day.

Interestingly, that's all improved out of sight since I've started fasting regularly. Some of it is surely plain mechanical (I'm lighter than I was, so there's less physical stress on all my joints) but the rate of improvement while fasting is such that that can't be the whole story. Bodies are weird and complicated, and what's happening in the gut affects pretty much everything one way or another.
posted by flabdablet at 3:43 AM on November 28, 2013 [1 favorite]

Keep a diet journal as well. I am so, very, skeptical of going overboard with attributing every last symptom to additives, GMOs, "leaky gut," etc., but I will say that I had two weeks of crushing fatigue with a clear beginning and end point: I had started, and then stopped, eating packaged oatmeal on a daily basis that listed sucralose (similar to Splenda) as an ingredient. A year later, I was experiencing similar fatigue and malaise serious enough to get ready to call the doctor and it turned out--lo and behold--that a "healthy" drink additive I had started using daily also used sucralose as a sweetener.

I mention this specifically because others have found that sucralose causes bad joint pain; there may be other foods or additives (artificial or natural) that coincide with your symptoms.
posted by blue suede stockings at 7:26 AM on November 28, 2013 [1 favorite]

My wife went through the whole extensive Lyme disease treatment only to find out it was not the source, but the doctors told us it needed to be ruled out first since the preliminary tests for Lyme disease can be inconclusive. After that didn't work, our search led us to Ehlers-Danlos Syndrome (previously mentioned) which is diagnosed by a geneticist.

We've learned about the condition and managed to change some of our activities so she's not constantly injuring herself - what seems like "normal" activity to most people, is actually "over exertion" for her. It took some adjustment for both of us but it has really improved our lives and reduced her pain (or I should say we are better at keeping it in check).
posted by rwheindl at 8:05 AM on November 28, 2013 [1 favorite]

Just because she did not test positive for RA doesn't mean that the rheumatologist was wrong to prescribe one of the biologic drugs. There are other kinds of auto-immune arthritis besides rheumatoid arthritis that fall into the category "spondyloarthropathies". There is no true blood test for the spondyloarthropathies, unlike for RA. Undifferentiated spondyloarthritis, also called "seronegative spondyloarthritis", doesn't fit any clear diagnostic criteria for another type of auto-immune arthritis but exhibits chronic inflammatory arthritis symptoms. That has been my diagnosis, and Humira has given me my life back. I would encourage her to return to the rheumatologist and ask more questions, rather than just dismissing that doctor's recommendation because it didn't meet your expectations and you are skeptical of what is indeed a wonder drug.
posted by hydropsyche at 9:42 AM on November 28, 2013 [4 favorites]

Much of your description sounds very similar to what we went through with my daughter who was eventually diagnosed with Complex Regional Pain Syndrome. After 5 years of terrible pain which severely limited her quality of life, we were finally able to get her treatment earlier this year at a specialized program in Philadelphia. A precipitating injury is often the cause of CRPS. Stress is believed to be a factor - was your girlfriend under stress beyond the original injury?

Do the areas where she has pain look or feel any different to other body parts? Are they painful with even a light touch? If so I would strongly suggest you find a doctor who knows about CRPS, because it is relatively unknown in the medical community outside some specialists, at least in our experience.

The only factor which makes me think it could not be CRPS is the brief response to antibiotics, though we never tried them during our difficult journey with pain.

If you think CRPS is a possibility, feel free to memail me. I gained a lot of knowledge about it after the diagnosis and during treatment. And if not, I wish you both the best of luck and a speedy diagnosis and resolution ... Living with pain is incredibly difficult.
posted by valleys at 2:09 PM on November 28, 2013

Response by poster: Hydropsyche, thank you for weighing in. You're absolutely right, and we shouldn't rule anything out.

I think we're skeptical of the RA diagnosis because antibiotics seem to make a big improvement (though she's backslid after each rally), whereas anti-inflamitory drugs have done nothing. Her pain is also asymmetrical, and the literature on RA suggests that it tends to affect joints symmetrically. Finally, her PCP contested the diagnosis in a second opinion, saying he'd really like to know how the specialist arrived at that conclusion based on the presenting symptoms.

As for other data, she's an otherwise healthy woman in her mid 30's. She'd not overweight, and she's well-nourished. She has no joint abnormalities, such as hyperextension. She is extremely stressed out a lot of the time due to work and tension with her family, and I know that could be a contributing factor.

Thanks again to everyone for sharing you experience and suggestions, and a special thank you to those of you who are struggling with pain right now. I hope you feel better.
posted by ducky l'orange at 9:39 AM on December 1, 2013

Just to follow up: Spondyloarthritis is generally asymmetric. Seriously, "alternating buttock pain" is actually a symptom (and it's awesome!). The chest wall pain is also more characteristic of spondyloarthropathies. If you google, there are lots of anecdotal accounts, and some studies, of antibiotics helping inflammatory pain in both RA and spondyloarthopathies--they don't have a good hypothesized mechanism yet. And at first, I thought NSAIDs didn't help me either. It turns out that I needed a significantly larger and more sustained dose than I had tried, the maximum dose of naproxen twice a day for a week or so, before things were under control enough for me to realize it was helping.

I really think a rheumatologist is your best hope for diagnosis, regardless of what that diagnosis ends up being. They are the real life "Dr. Houses" of the world. It sounds like you/she did not like or trust the first one, so ask for a referral to a different one. You may find browsing forums, or just asking around, that you can find someone who is especially known for their detective skills.
posted by hydropsyche at 2:47 PM on December 1, 2013

Response by poster: I know it's been a while, but thanks again for your thoughtful reply, Hydropsyche. I think my GF would be very interested in the findings you cited.

I really appreciate the community support on MeFi in general as well; thanks, wonderful people!

To our great relief, an extended course of amoxicillin appears to have done the trick after all; her pain is gone, with only some lingering stiffness in her knee. She's been pain-free for several months now.

To this day we have no diagnosis. I'm not sure what to make of this whole experience, but I'm grateful that her improvement has been so tremendous.

Wishing everyone on this board the absolute best.
posted by ducky l'orange at 11:53 AM on February 24, 2014

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