Why this joint pain?

September 28, 2017 10:41 AM

Has anyone ever has a misdiagnosed rheumatic or autoimmune disease before? What happened? The rheumatologist says it's nothing, but it's definitely something- feedback from people who have experienced something similar welcome

About 8 or 9 weeks ago I began experiencing extreme joint pain that comes and goes without warning. At its worst, an 'episode' might impact 45% of my body's joints, in no particular pattern; the pain could be in my left wrist, the 4 toes of my right foot, my ring finger on my right hand, my elbows, and the back of one of my knees. These episodes can last for 10-18 hours or so. For instance, yesterday I was fine all day, but around 10 PM the back of my right knee began to hurt so bad that I was barely able to walk. At times, I can barely turn on the faucet, brush my teeth, wash dishes, etc.

I am a 28 year old woman. I went to the rheumatologist and he ordered blood work. Yesterday he told me that the blood work came back normal. There is a history of rheumatoid arthritis on my mom's side. When this happens in my fingers, my rings do not fit. Other weird thing: I've had a long standing rash on my back since I was a teenager, and recently it began to get much worse, spreading to my chest as well now- small, mis-shappen brownish ovals that don't feel like anything, and come and go. I have used an antifungal cream which has made it go away temporarily, but it always comes back.

I am in so much pain, and I am worried and a little scared.
Has anyone ever had a misdiagnosed rheumatic disease, or anything like this happen before? What happened? How was is caught, or not caught?

posted by erattacorrige to Health & Fitness (15 answers total)

Does it track with your hormones or menstrual cycle at all?
Have you been tested for Lyme disease?
posted by littlewater at 10:56 AM on September 28, 2017

I am diagnosed as "seronegative rheumatoid arthritis" - that is my blood tests come back negative but my symptoms are (according to my rheumatologist) so classically rheumatoid arthritis that she had no hestiation in diagnosing me with it (and we basically confirmed it by putting me on meds, which worked). That is a thing. I don't know enough about the classic symptoms to know if yours match them, but I do know that seronegative rheumatoid arthritis is a thing. That said, it's not the only thing that causes joint pain. Get a second opinion, from another rheumatologist and/or an orthopedist.
posted by brainmouse at 10:57 AM on September 28, 2017 [3 favorites]

My wife has been dealing with some sort of fibromyalgia-like condition for several years now. She has been to multiple specialists, all of whom offered different diagnoses and therapies. She has finally found a good GP that will listen to her and take her seriously, and had been moving from a diagnostic approach to more of a palliative approach - she admitted to herself that she was never going to get a solid diagnosis and was just going to manage the symptoms - when I randomly came across an article about a intestinal bacterial overgrowth that people who have had bariatric surgery (like my wife) are particualrly susceptible to, and can manifest very similar to a more autoimmune myalgia. She is going to try an aggressive antibiotic as soon as insurance approves it.

So, long story long, I would first continue to work with the rheumatologist - if bloodwork is clear, what other things could be causing these symptoms? What other specialists should I work with? Basically, keep working your way through the system, making sure that you are being heard by your doctors about your symptoms. Keeping a diary is a great way to do this.

Good luck.
posted by Rock Steady at 11:35 AM on September 28, 2017

Seronegative rheumatoid arthritis is totally a thing - I was diagnosed with it for several years until it occurred to me to mention my weird flaky ears to my rheumatologist and he blinked at me, peered into my ears, and said "You don't have rheumatoid arthritis. You have psoriatic arthritis, and the med you've been on does nothing for that."

A doctor that tells you that pain that lays you out for a day is nothing is a bad doctor. Finding a rheum these days is not super easy (apparently there's a shortage!) but I would very strongly suggest you find a new one.

(In my personal case, I also independently did an elimination diet and found that I have an unmistakable autoimmune reaction to gluten, and cutting it out significantly improved my symptoms. If nothing else, it might give you the feeling of having *some* control over the situation, which is nothing to sneeze at. I did the Whole 30 and can recommend it, if that's something that appeals.)
posted by restless_nomad at 11:39 AM on September 28, 2017 [4 favorites]

IANAD, but IAAAP (I am an Autoimmune patient)...

Autoimmune diseases are commonly misdiagnosed, and/or take a long time to achieve a diagnosis at all. Test results are often a moving target (abnormal one time, normal the next). This is NOT unusual for autoimmune diseases and should NOT prevent a doc from taking your symptoms seriously and working with you to treat your pain.

Many of us spend time in a no-mans-land known as Undifferentiated Connective Tissue Disease (UCTD) before getting a more definite diagnosis. (And some UCTDs never evolve into anything more definite.) But even UCTD can be treated with antimalarials such as plaquenil, steroids such as prednisone for flares, steroid creams for rashes, etc. (Words cannot fully describe how drastically my life improved when my rheumy put me on plaquenil.) I strongly recommend getting a second opinion, third opinion, etc. Keep going until you find a doc willing to take your symptoms seriously.

I also second restless_nomad's experience with Whole30 and eliminating gluten from my diet. Not only do I hurt less, but I am reaping the mental benefits of Doing Something to improve my health despite the uncertainty.

Good luck and hang in there. It's so hard to muster the energy to be persistent when you're in pain, but I promise it will be worth it.
posted by somanyamys at 11:55 AM on September 28, 2017 [2 favorites]

I have a very similar thing going on and am currently in the process of being diagnosed. My GP did a blood panel which came back negative for RA markers. But she said it could still be RA, and has referred me to a rheumathologist. So I would try to find a new doctor if I were you. Good luck!
posted by The Toad at 12:01 PM on September 28, 2017

I have what seems to be a very atypical case of rheumatoid arthritis (I only have one of the three marker symptoms and my bloodwork was negative at the last test). My rheumatologist continues to treat me based on what works for me because even if it's not RA, it's something very painful and debilitating that responds to immunosuppressant medication.

Even if it's not easy to diagnose, they should still treat you. If they won't, go to someone else.
posted by bile and syntax at 12:05 PM on September 28, 2017 [1 favorite]

Hi, this very closely tracks with my arthritis, which was at its worst in my 20s and has since tapered off in intensity. I was once hospitalized with a suspected bone infection because the joint in my big toe got inflamed to the point that I couldn't walk. After many years of going to a rheumatologist on-and-off (like you I was seronegative), I was eventually referred to an immunologist, who did some pretty exotic blood tests and discovered that a severe childhood 'flu' had actually been parvovirus.

TL:DR; some viruses can trigger arthritis. It might be worth seeing an immunologist. That said, discovering the cause of my arthritis didn't really affect the treatment, which involved multiple anti-inflammatories in the middle of a flare, physiotherapy and a couple of courses of methotrexate. Regardless of cause, you rheumatologist should be working with you to help you control symptoms during a flare.

Edited to add: SEE A PHYSIOTHERAPIST. Very careful, supervised exercise was THE most important factor in helping me recover from arthritis flares.
posted by nerdfish at 12:23 PM on September 28, 2017 [1 favorite]

are you or were you a couple months ago taking any ostensibly harmless medications, including antibiotics? the only allergic reaction I ever had was to clindamycin, which made my elbows and other joints swell up like ouchy tennis balls. it was visible to the naked eye, not just painful. the nurse help line and subsequently a couple of doctors all acted like they had never heard of any such reaction in their miserable lives, and I had to get them to recreate my google search for "clindamycin side effects" and discover for themselves that what do you know, it does say "joint pain," why don't you stop taking it and see what happens. and as soon as I did that the freaky reaction went away.

unlikely, I know, but it is such a weird and rare side effect that if it does have any connection to something you took, nobody would have warned you and nobody would necessarily have thought of it when you described your symptoms. so if you took anything around the time this started, check the unusual side effect list and see if this is among them.
posted by queenofbithynia at 12:25 PM on September 28, 2017 [1 favorite]

I am very sorry to hear about your pain. I would definitely get tested for the obvious possible causes and hope thta provides the solution you seek.

Most issues like this come back to inflammation getting out of control based on my research and personal experience. Unfortunately, this is also how the body heals itself. So finding a balance and promoting the right balance is key. I offer the below from my experience. It may or may not work for you but I really hope it does!!

If you are game to try something, as a test I would try an elimination diet to rule some things out. Cut out the big items that can cause or fan the "flames" of inflammation or make the body filled with mucus and see if that helps. I would start with ALL Dairy (no cheese, milk, etc..), Wheat (gluten / wheat flower), Alcohol and Corn (yes, pop corn, grits, etc..). It is a lot of work if you are new to this but opens many other doors.

Cheating a bit will not be a good enough to know if it helps so be resolved or wait till you are. It will take a good 3+ weeks to see what the status is and longer is better (several months if it is really bad). Beware, whey and casein (milk byproducts) are in so many things that you have to be careful what you buy that is prepackaged. It really takes longer to see a lasting difference but 3+ weeks should show you if it is helping (or not). Get omega-3 and tilt the balance towards 3 over 6. Cold weather leafy greens are awesome in my experience.

Create a journal of the days, what you ate and the experience. Try not to go at the pain but note it and dare I say, "accept it". Fighting it can be its own downward spiral. Once you are through the initial phase and you have found positive results do some slow and careful investigative work on what brings it back.

Only add in small amounts of each every other day or two before continuing the experiment. Then play with it to see what you react to the worst. Expect a lag between ingestion and impact and track stress levels at the same time. On that note, be aware that stress can also be a big trigger; the nervous system has a big impact. There are so many factors and influences to the inflammation within the "bags of skin" we all inhabit that attention to detail is key to success.

Some people I have communicated with also have issues with nightshades (tomatoes, peppers, eggplants). If it is an issue that is bacterial, then fermented foods can be a key element in healthy bacterial rehab (kimchi, kombucha, tempeh, miso, etc..) . And depending on the source of the problem it may take even more steps to figure out what is -- at the very least -- fanning the "flames".

Seems drastic? Pain free is worth not eating anything that can cause the issue. Going down this road is challenging so I hope the above helps you in some small or hopefully big way. Good luck!
posted by cookiemaster at 12:38 PM on September 28, 2017

Have you been travelling lately? I don't want to give you false hope, but I had similar symptoms after spending time in Central and South America. At the time I asked the question, I had back for about two months and suffering for at least 6 weeks. My doctor initially thought I might have lupus or something along those lines, but pursued the parasite line-of-thinking after I found out that my travel friend had some of the same symptoms. I also went to a rheumatologist, who wasn't very concerned about my symptoms.

It was never clear whether my (many?) parasites were causing the migrating joint pain, but it did go away pretty quickly after treatment with antibiotics and pinworm medication (not sure what that was, exactly). I have never heard of this type of thing happening with anyone else, but I can't be that special of a snowflake.
posted by Paper rabies at 1:23 PM on September 28, 2017 [1 favorite]

What bile and syntax said. Regardless of what the bloodwork indicates—if you're in this much pain, there is something wrong, and a decent doctor ought to be treating and investigating it!

Seronegative rheumatoid arthritis is more common than you'd think. The symptoms you describe (especially the involvement of the small joints of the hands, feet, wrists, and knees) sound exactly like my RA flareups. I do agree that it's a good idea to look into diet, especially if it gives you some sense of control (I am sensitive to nightshades, myself), but I definitely wouldn't stop there. As I'm sure you know, if you have rheumatoid arthritis in the family, RA isn't simply painful—it can cause long-term joint damage if not controlled. If you can, I would get a new rheumatologist.

I'm sorry to hear you're in so much pain; I know these kinds of episodes can be terrifying and disabling. Best of luck!
posted by fire, water, earth, air at 9:34 PM on September 28, 2017

Do as everyone else says and keep seeing specialists who can rule in, rule out or theorize on your condition. Keep a health journal. However, if results continue to come back negative and the idea of fibromyalgia is floated, you should know that palliative treatment largely involves stabilizing sleep, diet, hormones and stressors. (A good idea in any case!) I recommend Dr. Ginevra Liptan's FibroManual.

You might also read up on pain theory, which is much stranger and more mysterious than you can imagine! Nutshell: It's not in your head, but it's kind of in your head. Whether or not there is underlying tissue damage, you have some control over how your body interprets and responds to chronic pain. PainScience.com has good overviews. Check out "central sensitization" to see how your nervous system can get stuck in a feedback loop of chronic hyperarousal. Mind and body feel as one; all pain disorders are, to some extent, psychosomatic or "mindbody" conditions.

I had roving arthritis-like pain and fatigue for three years, disrupted digestion for eight years before that, sleep abnormalities from age 10, family history of autoimmune disorders, personal history of trauma, all negative results like yours. Bounced through rheumatologists, cardiologists, dermatologists, allergists, physical therapists, naturopaths, primary care doctors. In the last six months I've successfully reduced my pain by 90% through lifestyle changes and cognitive behavioral therapy. I take a few supplements but no hard meds. Will that change as I age? Perhaps. Maybe I'll develop a full-fledged disease. But for now, my body is under control for the first time in.. well, ages. PM if you like.
posted by fritillary at 11:05 PM on September 28, 2017

My psoriatic arthritis started with a rash on my back that te GP thought was Pityriasis Rosea (I don't think I made it to a dermatologist until later), knee pain that the orthopedic surgeon suspected was a meniscus tear + running overuse pain, and plantar fasciitis that the GP dismissed as,again "duh, you're a runner."

Only when the actual arthroscopic surgery revealed no tear and they took blood and looked at the sed rate and white cells did figure out what it was and all the pieces made sense (and the fact that my thumb joint had been sore didn't occur to me to mention, so I also thought it was running stuff). Also, my psoriasis is/was guttate, which is extremely rare (something like 2% of people who even have psoriasis), which is also why it didn't occur to the docs right away.

I know you're bloodwork isn't showing it, but see above comments of seronegative, so maybe psoriatic arthritis is a possibility.
posted by Pax at 7:11 AM on September 29, 2017 [1 favorite]

Response by poster: I'm so glad to hear about everyone's experiences with these sorts of issues.

Re diet: I have already started to modify my diet to accommodate joint pain: cutting out red meat, dairy, gluten, sugar. Adding more antioxidant rich foods. Giving up beer. This was my first line of defense when this started happening.

Re Pax: I wonder if I have what you have on your back as well, my rash looks like this. It occurred to me that it might be seronegative psoriatic arthritis.

The other thing I researched is Wellbutrin, which apparently has a rare side effect of joint pain. I emailed the rheumatologist to mention this and he replied "never heard of that impacting people like this, but trying going off of the meds and seeing the pain goes away, then taking the meds again to see if it comes back."

I haven't been traveling in the past year, but I had traveled to a dozen countries or so in the past few years prior, including to India and Central Asia.

Have also not taken any other medications aside from the bupropion, so seems safe to rule something like that out.

I am 130 pounds and 5'5", I do not have any issues with obesity any kind of weight related complications, and I walk everywhere (live in the city) and dance and am active; it's been kind of annoying to have people ask, "well have you stretched lately?". This is *not* that kind of pain.

Yeah, I get that anything you experience in the peripheral nervous system is relayed back to the central nervous system which is where the pain is actually processed and experienced, making pain "in your head" but also not necessarily "in your head."

Noting all of this information, and am very appreciative of the feedback and suggestions and experience-sharing!
posted by erattacorrige at 8:26 AM on September 29, 2017