Next steps for joint pain?
September 20, 2018 3:57 PM   Subscribe

Not sure if I should push to see a specialist or just follow the advice of my GP. Details below the fold.


I saw my GP for bilateral joint pain in my hands and ankles. Pain and stiffness are worse in the morning and after resting. She sent me to the lab for a dozen tests; all came back normal. I was concerned about rheumatoid arthritis because my mom has it and she recognizes my symptoms. I'm thankful it's not RA, but I'm not sure what to do next. Before the labs, my GP said if it was RA, it was a very mild case (and acknowledged that it doesn't feel mild to me - which it doesn't) and also said that the next steps would be an OT, PT, and/or rheumatologist depending on the results. She also recommended taking ibuprofen for 2 weeks maximum. She mentioned Humira and Cymbalta, but I'm not sure if those recommendations were dependent on lab results.

The pain and stiffness in my hands flared up several months ago, at the end of my second trimester. By the end of my pregnancy I could barely write. I attributed this to the carpal tunnel that I got during my pregnancy, but that went away and the GP ruled that out. The clicking in my fingers still remains, but the GP said this was normal, and demonstrated with her wrists - they click loudly. My fingers don't click audibly but they often feel like they're almost dislocated. My hands pretty much always feel swollen. It sucks. She gave me stretches to do for my hands and ankles and said that's the best thing I can do for myself at this point.

Currently, I have trouble lifting heavy-ish things like pots and pans, I can't make a fist in the morning, and I shuffle when walking to my baby's crib (2 rooms away) because my ankles are so stiff. The stiffness in my ankles subsides after I've "warmed up" a bit. But my hands take much longer. The stiffness comes back if I rest too much. And the pain in my hands comes and goes, but it's distracting and it hurts. Of note is the fact that I was on Prednisone 4 or 5 years ago for an unrelated allergy, and I felt like a new person. I had ankle issues back then but attributed it to Achilles problems.

I'm 38. Is this a "suck-it-up" age kind of thing, where I'm just getting old and busted?** Or should I push to see a specialist? Labs are normal so pushing to see a specialist sends the message to my GP that I feel like I know more than she does, and dismisses the reality that the labs are all normal, which makes me look like I'm crazy.

My mother thinks I have some kind of arthritis, but now with the lab tests coming back normal, I'm not sure what to do.

**I used to rock climb, run, hike. I eat healthy, I'm not overweight and I've lost most of my baby weight.
posted by onecircleaday to Health & Fitness (21 answers total) 6 users marked this as a favorite
stretches to do for my hands and ankles and said that's the best thing I can do for myself at this point.

In my personal experience, these really do help. But you have to do them absolutely regularly, religiously, perhaps even more than suggested. Really hold those counts, max the reps, max the sets.

Also, for the wrists: stop smart phoning so much, these things are horrible for ergonomics.
posted by SaltySalticid at 4:25 PM on September 20, 2018

Definitely get screened for autoimmune conditions.

It's worth asking about a specialist or going to a university like Johns Hopkins or Wake Forest. Most doctors won't think it's pushy. You need options, and you're not getting a lot of answers now. A friend has been dealing with similar symptoms and tons of test and is now even exploring environmental factors. So there are lots of things to look at. Please don't give up after these tests. You deserve to get better.
posted by mermaidcafe at 4:27 PM on September 20, 2018 [3 favorites]

Labs are normal so pushing to see a specialist sends the message to my GP that I feel like I know more than she does, and dismisses the reality that the labs are all normal, which makes me look like I'm crazy.

Your GP sees maybe 30 patients a day and really doesn't have time to take this personally like you think she might. I doubt she will. If you ask for a specialist and they act like you're crazy or disrespecting their authori-tay, you should definitely get a second opinion from a specialist and then find a better GP for good measure.
posted by grouse at 4:35 PM on September 20, 2018 [6 favorites]

From the blue today: What if the doctors had listened to her? (cw: very bad medical outcomes)

This article might help reduce your worry about your GP's ego, i.e. "the message to my GP that I feel like I know more than she does," and maybe help reassure you that if your doctor makes you feel like their ego is more important than your health and well-being, it's okay to find another doctor.
posted by Little Dawn at 4:36 PM on September 20, 2018 [1 favorite]

I am older than you but started having something similar a few years ago as my cycle was changing. My GP told me changes in the hormonal cycle could cause RA like symptoms with the tell tale sign being the warm up time. I am reluctant to say the next part since I am aware scientific evidence is not there, but I supplemented with vitamin D and did the exercises and it went away. (I also tested positively for vitamin D deficiency.)
posted by frumiousb at 4:47 PM on September 20, 2018

I’m 46 and I have joint pain, but nowhere near what you describe. I would not consider not being able to lift pots and pans “normal” for your age. Push to see a specialist. Push for an answer. Keep trying to find the thing(s) that work(s) for you.

(I’m taking glucosamine for my pain, and it seems to be helping. I also ditched my PT, which wasn’t seeming to help, and took up swimming, and my body is remarkably better for it. Before starting swimming a year ago, I had pain in both knees, both shoulders, both elbows, both forearms, and one ankle. Today? One knee. And that’s mostly from a fall I took 2 weeks ago. IANAD)
posted by greermahoney at 4:49 PM on September 20, 2018 [1 favorite]

I'd definitely get to a Rheumatologist. You've used a few key phrases that are hallmarks for Spondylitis: Worse in the mornings or after rest, improves with activity. There's a specific sub type called Peripheral Spondyloarthritis. There are no diagnostic blood tests for it, but ultrasound or other imaging modalities can see the inflammation that might be happening. Your GP suggesting Humira makes me think she's also thinking about it.

Best of luck.
posted by michswiss at 4:54 PM on September 20, 2018 [4 favorites]

Response by poster: I would not consider not being able to lift pots and pans “normal” for your age.

Not to threadsit, just to clarify - I have trouble lifting with either hand. Like, lifting a large sautee pan in the sink, by the handle, and trying to wash it - that's difficult. I have to use both hands to flip it to clean the underside of it. Same problem when lifting it with one wrist/hand to dump the contents of dinner into a Tupperware container. I have to have my husband do it. For reference (and curiousity) I weighed it just now, and my large sautee pan is about 4.5 pounds.
posted by onecircleaday at 4:58 PM on September 20, 2018

If you went from rock climbing (upper limbs handling much of your body weight) to having trouble lifting a 5 pound pan, i would consider that a loss of function.

Doctors can't feel your symptoms or judge how much you may be exaggerating, plus there seems to be a baseline of "well, life hurts, suck it up" that I think is actually too low. I would advise you to advocate hard for yourself- you sound very reasonable and your symptoms do not sound like normal 38 year old problems to me.

The only thing to consider that might mean these symptoms are no big deal is some people do experience joint pain during/after pregnancy because of the side effects of relaxin opening your pelvic area. Maybe research how long those effects typically last.
posted by pseudostrabismus at 5:24 PM on September 20, 2018

If you have a rheumatologist or arthritis clinic near-ish to you, I would strongly recommend it. I started having symptoms at 16, got blown off by several doctors ("growing pains"? really?) and spent a bunch of time dicking around with medicines that didn't work and/or enough prednisone to get some serious side effects before I got properly diagnosed. (I have psoriatic arthritis with atypical psoriasis - it'd never occurred to me to mention my itchy ears in conjunction with my achy hands and feet until my rheumatologist asked me about flaky/itchy skin specifically.) It took someone who actually knew about the various forms of autoimmune arthritis specifically to pin it down and get me on the right meds for it.
posted by restless_nomad at 5:46 PM on September 20, 2018 [3 favorites]

Go to a rheumatologist! Pregnancy can trigger RA and - importantly - it does not always produce a positive blood test ("seronegative rheumatoid arthritis") and a good rheumatologist can diagnose it anyway. That's that happened to me! After my GP kept telling me to wait and it was just post-pregnancy joint pain and I knew it was worse than that.

In my experience, being in constant pain is really mind-warping. Like I'm walking back to the office after grabbing lunch and I know that if I hold the paper bag normally in my curled fingers for the 2 blocks my hand will hurt for hours and thinking to myself "but that's not too bad, right? That just happens?" And then I went on RA meds and I just like... Don't hurt anymore. Please push to see someone.
posted by brainmouse at 5:52 PM on September 20, 2018 [7 favorites]

Hey I am going through the same thing including the negative blood tests and while I think I’m dealing with atypical psoriatic arthritis I have found that eliminating dairy and wheat have improved the pain significantly while not eliminating it entirely and I’m looking closely at other foods to see what might be triggers. So, look into allergies. I saw big improvement after removing my birth control implant (I was bedbound 2-3 days a month and really suffering), and the next biggest leap in improvement was eliminating dairy. Around the same time I noticed wheat was giving me headaches and I stopped that too. Slowly but surely I’m finding improvements and the biggest jumps started after I paid for blood tests to get a baseline of my hormone levels and vitamin levels and started taking vitamin D, iodine, and pregnenolone to help level out my low progesterone, then did an elimination diet and noticed huge flare ups when reintroducing dairy.

It’s taken me two years from my initial doctor appointment and round of blood tests and I’m feeling so much better. I still have pain but not all the time, not everywhere, and I there are still improvements I can make in diet and ergonomics. I turned 39 last week. When I turned 37 I really was wondering if I was going to be permanently disabled before 40.
posted by annathea at 6:32 PM on September 20, 2018

And like brainmouse, I had no idea all the ways I had been compensating for chronic pain until I wasn’t experiencing it anymore. I winnowed my shoes down to three very comfortable sets of walking shoes because a day in flip flops or frivolous boots was crippling for days afterward. I don’t have to try and snag the closest parking spot to the door of the grocery store and if I want to hop on the treadmill at whim I don’t have to stretch and plan my day around a possible recovery period of hours. I really didn’t fully understand how pervasively awful it had been until it was gone.
posted by annathea at 6:38 PM on September 20, 2018 [1 favorite]

Have you seen an orthopedist? In my experience, they're typically easier to get in to see than rheumatologists. (I have both ortho and rheum issues. If I need my ortho, I can get in within a week at the latest. Rheum, if I can see her inside 3 months, I'm thrilled.)

One thing you might try for your hands is one of those paraffin wax hand dipping thingies. I have similar hand pain and weakness to what you're describing, and it helps a lot. Or just a plain old moist heat heating pad. Sometimes ice helps, too.

Never ever ever ever ever refrain from pushing for answers when things feel wrong. It took me 11 years to get my first major diagnosis, years full of "We can't find anything wrong, here's some drugs, go away."
posted by The Almighty Mommy Goddess at 6:41 PM on September 20, 2018

Depending where you are in the life cycle of an autoimmune flare, your labs could come back normal even if you do actually have an autoimmune problem - normal labs don't rule automimmune stuff out. (I have an autoimmune diagnosis and I get regular lab tests and they're usually normal). It's my understanding that more often they're useful for verifying a problem, if they get run at the right time.

I would push for both PT and the rheumatologist. PT will likely give you immediate relief of some sort via massage and stretches and exercises. The rheumatologist should be good at dealing with puzzles.

PTs in my experience have been better than my gp in discerning the subtleties of joint pain, recognizing inflammation, structural problems, misalignment etc way better than a gp would. They also seem to have great doctor recs - they see a lot of people who have just come from the doctor and either complain or celebrate them!

But yeah like others have said, escalating is the most important thing and an orthopédiste may be able to help too if it's going to take forever for a rheumatologist appt.
posted by Tandem Affinity at 7:16 PM on September 20, 2018

I've had autoimmune arthritis since my age was in the single digits, and sometimes my labs look normal, too. Autoimmune diseases can be murder to diagnose.

When I'm flared up, sometimes heat helps. It often hurts to do my daily hand exercises, but they do help as well.
posted by The Underpants Monster at 8:44 PM on September 20, 2018 [1 favorite]

Meant to add: to this non-doctor frequent-patient, your situation sounds like it would be absolutely, completely appropriate to seek a specialist's help.
posted by The Underpants Monster at 8:46 PM on September 20, 2018

I have similar symptoms, negative RA test, tests for inflammation just slightly elevated. The Rheumatology practice in my area is uninterested because the RA test is negative. I have other issues that suggest an autoimmune disorder. I recommend an elimination diet to see if it will help. I became lactose intolerant, gave up dairy entirely, and it helped the pain and stiffness a lot and for a long time. Many people have success with eliminating gluten/ wheat. It's a pain and you're busy with a baby, but it could be very helpful. This is so frustrating, and I'm sorry it's happening to you.
posted by theora55 at 9:07 PM on September 20, 2018

Another spondylitis patient here (ankylosing spondylitis in my case), and I too think you shouldn't give up on investigating arthritis. The lab tests often do come back normal. Get a referral to a rheumatologist based on your symptoms and family history. The Achilles pain and the morning warmup and the prednisone joy are all really good reasons to suspect arthritis. Even if the rheumatologist isn't able to diagnose you, they should be able to rule out a lot of different autoimmune conditions. Good luck.
posted by hollyholly at 6:13 AM on September 21, 2018 [3 favorites]

Response by poster: Thanks so much, all. I got a referral from my GP with no problem. I see the rheumatologist in two weeks.
posted by onecircleaday at 10:36 AM on September 22, 2018

Response by poster: Also, for anyone who is interested, here is some information I received via MeMail from a fellow user regarding joint pain:

- avoid sugar, caffeine, tea, chocolate, etc.
- avoid piles of carbohydrates

- for me, magnesium helps (my body doesn't efficiently use the vitamins and minerals necessary to make collagen)

- The big one I learned recently is turmeric. Turmeric is basically Ibuprofen except the turmeric is good for digestion instead of damaging like Ibuprofen is (I read a study that did a test and that's what they found, and it matches my personal experience). There's lots of kinds of turmeric - some are better for cooking and some are more medicinal. I'm not sure which is which, I just use the turmeric powder rolled into balls with a smidge of honey to hold it together and sold as medicinal for $2.45 at my local Asian grocery food store (it's like 10x that at the natural food stores). I take 4 little balls 3x/day, and if I forget, my body often reminds me. My pain isn't as bad as yours, but it's certainly worse than it should be at age 35. This helps me.

I just did a search, and here it says it's used as an herbal remedy for RA. Here's a study on turmeric and arthritis. Here is the turmeric they used for that study.

posted by onecircleaday at 10:50 AM on September 22, 2018

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