diagnosing joint pain
June 5, 2017 7:22 AM   Subscribe

I have pain in most of my joints, and have been sent to a number of different doctors to diagnose this and other things. One doctor says I have arthritis, one says I have fibromyalgia, one says I have Lyme disease. (I test negative for Lyme.) Is there any way to determine the correct diagnosis and obtain useful treatment?

If relevant, I am a 41-year-old woman and have had joint pain for about ten years that’s significantly worsened in the last three.
posted by metasarah to Health & Fitness (17 answers total) 4 users marked this as a favorite
Oof that's rough. Have any of these doctors attempted treatment? Unfortunately, one of the common ways of diagnosis is to try to treat something and see if it works - at the end of the day the diagnosis doesn't actually matter if something stops the pain. What do the various doctors recommend you do next?
posted by brainmouse at 7:31 AM on June 5, 2017 [1 favorite]

What brainmouse said. Try some things and see what works.

And do they mean osteo arthritis or autoimmune arthritis? Big diff in treatment options.

If it's Fibro, there's a few different meds that help, if it's autoimmune arthritis, then they try stuff until they jolt you into remissive states as much as possible.

But you might want to, if you've got this much warning that things are going to suck, good days and bad days, move from any physical job you have to a more in-office type of job that you can do flexibly.
posted by tilde at 7:38 AM on June 5, 2017

Response by poster: Osteoarthritis is the rheumatologist's guess. Treatment suggestions for both that and fibromyalgia have been "take Advil, exercise, and don't overexert yourself;" ibuprofen has no effect and exercising without causing 4-7 days of pain doesn't seem to be possible. I have not gone on a long course of antibiotics for Lyme because antibiotics do pretty awful things for my body; I'm certainly willing to if it might help but if there are indicators that make Lyme seem unlikely, I'd rather not.
posted by metasarah at 7:48 AM on June 5, 2017

Best answer: Osteoarthritis should be apparent on an x-ray as joint space narrowing. (That's subject to interpretation by the radiologist, though, unless there are two x-rays of the same area a couple of years apart to compare). Other kinds of arthritis and immune disease can be picked up by a rheumatologist, who is the specialist you should probably see. (All signs point to fibro being the "idk, uncle" diagnosis, despite it being a real thing.) Can you share info about where you're roughly located? On preview, see another rheumatologist.
posted by cotton dress sock at 7:49 AM on June 5, 2017 [1 favorite]

There isn't a cure for osteoarthritis. Treatment is just NSAIDs, gentle exercise, weight management, and avoidance of further injury (because any injury increases risk of OA). There is research happening on possible DMOADs (disease modifiying drugs for OA, which they hope would slow the progression), but as of 2017, there's nothing yet that can selectively target the mechanisms they think are at play/make a difference. (Contrary to prior thought, there are some inflammatory processes happening with OA at the micro level, but they don't really know how to control them yet in the way they can with RA.)
posted by cotton dress sock at 7:52 AM on June 5, 2017

(Synvisc injections can help cushion joints temporarily, but they have to be done every 6 months, and they're not cheap.)
posted by cotton dress sock at 7:59 AM on June 5, 2017

There is a fairly objective test for fibromyalgia involving tender points throughout the body. However, the best way to tell whether it's fibro, currently, is to take Lyrica and see if that helps. It wasn't until Lyrica helped with fibro in double-blinded studies that fibro moved out of the junk diagnosis category.

Chronic Lyme is the new junk diagnosis. I have serious concerns about any doctor willing to diagnose it. Long-term antibiotics are quackery and dangerous. Look at the NIH's NIAID info page on chronic Lyme.

I'm not a doctor, but I know enough about reading scientific studies to loathe MDs who can't.
posted by radicalawyer at 8:26 AM on June 5, 2017 [1 favorite]

Response by poster: To clarify, I've never gone on the standard 21-day antibiotic treatment for Lyme; only the two-day preventative treatments when I've had ticks. I agree that long-term antibiotics do not make sense.

I do have tenderness in the points associated with fibromyalgia; the rheumatologist said this would be common with arthritis as well.
posted by metasarah at 8:38 AM on June 5, 2017

Anecdotal: I had joint pain all over when I had undiagnosed/untreated celiac disease. It's a common symptom. I did not have any gastrointestinal complaints. Maybe see if your primary doc will do a celiac blood test? (Fibromyalgia is a common misdiagnosis for people with celiac fwiw.)
posted by purple_bird at 8:58 AM on June 5, 2017 [2 favorites]

Well if we are being anecdotal here, I have more pain when I eat foods that I am allergic to, mildly allergic to. Nothing with any prick test, but done with super crazy food cleanse, and then re-introduction. And immediate unintroduction after it seems that's what's making me ill.
posted by tilde at 9:41 AM on June 5, 2017 [1 favorite]

I've heard joint pain as a symptom of celiac before, so that's a good tip.

I also have had mild joint pain that responds to the addition of fish oil to my diet (reverses when I run out of them, so reproducible). A cheap experiment. (I get Nordic Naturals brand, fwiw)
posted by acm at 12:50 PM on June 5, 2017 [2 favorites]

I have chronic joint pain and it's symmetrical, suggesting Rheumatiod/ autoimmune arthritis. I have other autoimmune issues and inflammation issues. But I test negative for RA. That's great, but it means that most doctors get hand-wavey and call it arthritis, fibro, depression, etc. I have become lactose intolerant and gave up dairy about 10 years ago. My inflammation and joint pain really improved. When I eat dairy, which is pretty rare, and mostly involves someone bring pizza or a coffee ice cream & hot fudge sundae with whipped cream to my house, my inflammation and joint pain get noticeably worse. It's anecdata, but doing some food tolerance testing is worthwhile. I try to remember a baby aspirin a day to mildly reduce inflammation, and for stroke/heart health. I find coffee quite helpful, and am working on reducing sugar intake further. Many people report that Vit. D is a big help and I try to remember to take it.

Some years ago, a doctor prescribed thyroid meds; my tests were low normal; that was a big help. Thyroid supplement has a low incidence of side effects and requires testing every 6 months. Swimming is a help if you can tolerate it, and get the best nutrition you can.

I know a lot of women who have inflammation and pain and low energy, and who get hand-wavey responses. Personally, I'm pretty sure there's an unknown disease process at work. Best of luck.
posted by theora55 at 2:55 PM on June 5, 2017 [2 favorites]

Tell us more about what the pain is like, please? Does it come and go or is it constant and consistent? Is it worse in different weather? What kinds of activities are okay, and what makes it worse? Have you tried giving up gluten or dairy? What about acidic foods (tomatoes, citrus, vinegar, alcohol)? Have you tried narcotics? What about marijuana? Is it worse at certain times of day? Do your joints swell? Are they stiff? Is it all smaller joints, or are the big joints bad too?
posted by bile and syntax at 4:18 PM on June 5, 2017

Best answer: If I had a mysterious medical problem that multiple doctors couldn't diagnose, I would recommend the Whole30 diet, because it cuts out pretty much everything and then adds it back in gradually, which is a lot faster than trying to do multiple rounds of different elimination diets because you'll know in the first few weeks whether it seems to be related to foods at all. There are a lot of medical problems we unfortunately don't understand fully yet. An elimination diet can't hurt you (except the pain of craving cookies), at least :-)

You can find some information on how to differentiate osteoarthritis and fibromyalgia online:
- With osteoarthritis, pain is worse with exercise, fibromyalgia pain tends to be worse at rest.
- Osteoarthritis tends to affect knees and hands in women and can affect hands/fingers and ankles/feet. The 18 tender points of fibromyalgia do not include the hands or feet.

I would agree with your approach of being highly skeptical of the diagnosis of Lyme, I would feel the same in your shoes.
posted by treehorn+bunny at 6:17 PM on June 5, 2017 [3 favorites]

I guess where I was going with my anecdote is that it's possible that some undiagnosed autoimmune issue might be at the root of your joint pain. Unchecked inflammation from an autoimmune issue (that's not specifically associated with joints) could cause this kind of pain.
posted by purple_bird at 9:49 PM on June 5, 2017 [1 favorite]

Response by poster: Affected joints, in order of severity: toes, hips, neck/shoulders (though these may be due to tearing a rotator cuff a few years back), hands, ankles, knees. I don’t think that they swell but I’m not 100% sure. I’m not sure what the difference is between stiffness and pain; I do have full range of motion but it hurts. There is always some pain but its severity varies; I’ve tried keeping notes on it but haven’t figured out a pattern/ triggers yet.

The pain is worse when I am totally sedentary OR if I exercise beyond a little bit of walking. Exception: toes don’t want me to walk at all; hips are better if I get more exercise. A rotator cuff injury precludes swimming. The pain was worse when I was on hormonal birth control.

I have tried going dairy-free, gluten-free, and sugar-free at various points without change, but I never did a full elimination diet of everything at once.

I do take fish oil and Vitamin D. I have normal thyroid levels but tried Synthroid earlier in the year; I only stuck with it for a week though because it was giving me stomachaches.

I’m near Albany NY and have decent insurance (except for physical therapy), but need referrals from my primary for all specialists and she thinks I'm just fine.
posted by metasarah at 7:26 AM on June 7, 2017

Did your Rheum do bloodwork? Like a LOT of bloodwork? X-rays of your hips/lower back? What makes the pain better - ice/heat? Worse in the morning/night? Get better after a while?

Have all these spots been sore for 10 years or has it been progressive? If your Rheum hasn't done bloodwork and just said 'it's OA and/or Fibro, sucks to be you', I would go for a second opinion. I didn't meet the all of the lab/testing criteria for Ankylosing Spondylitis, but had many of the signs/symptoms. My first Rheum said oh well, the second one gave me a trial of meds and said it would be a true diagnosis if I responded to meds. I responded, but it's progressed and I now have a new bonus diagnosis of RA to go with. So, yay? At least I know I'm not losing my mind.

I hope you find answers and feel better. In the mean time, keep digging and good luck!
posted by dancinglamb at 2:19 AM on June 8, 2017 [1 favorite]

« Older I feel bullied; he feels confident   |   Actual fix for scratched sunglasses Newer »
This thread is closed to new comments.