Joint pain diagnosis
March 9, 2021 6:29 AM   Subscribe

I have a lot of joint/ soft tissue/ tendon pain and weakness. My doctor sent me to a rheumatologist who ran a bunch of tests but didn't think I had an autoimmune disease or anything else she could treat. Do you have any ideas of what I might be able to do on my own or suggest to my doctors as a possible diagnosis/ treatment?

If I do anything even slightly unusual, I get an injury that takes a few weeks of rest to heal. These can be VERY minor things... cutting a carrot while apparently holding a knife not quite right, sitting with my ankles slightly twisted for a five-minute bus ride, doing physical therapy that involves slowly turning my head back and forth five times, etc. The relevant joint feels sprained and I need to rest it, often with a brace, for a long time. (And some never get back to normal.)

I don't have the hypermobility associated with Ehler-Danlos syndrome. I DO have arthritis in my fingers and toes (visible on MRI and ultrasound but not x-ray) but none evident elsewhere. I'm a 45-year-old woman. This has been somewhat of an issue for about 15 years, but has gotten much worse in the past five years.

Things I have tried:

Physical therapy, with three different therapists, which consistently made things worse even when it was VERY gentle.
Cortisone shot in wrist for possible carpal tunnel (no change).
Collagen supplements for three months.
Elimination diet.
Massage is somewhat helpful; I only wish I could get one every day!
NSAIDS, gabapentin, and other pain meds, including topical such as dicflocenac gel. Alcohol is the only thing that provides noticeable relief, which lasts 12-24 hours after I stop drinking. (I often go months at a time without drinking though.)
Two rheumatologists
Two orthopedists

My life is incredibly limited now; any suggestions are appreciated!
posted by metasarah to Health & Fitness (11 answers total) 3 users marked this as a favorite
 
This absolutely sounds like autoimmune arthritis to me. The pain from unusual activity/strain, arthritis changes visible on films, and ~day relief from drinking the magic right amount of alcohol. These are all things that I experience and I was diagnosed with psoriatic arthritis ~15 years ago. My bloodwork never shows any indication of autoimmune issues. Steroid shots don't is a damn thing for me, but oral steroids do (and are terrible and to be avoided in my case because my symptoms quadruple afterwards, no matter how gentle the taper). Biologic immunosuppressants also work, to varying degrees, depending on which one. Methotrexate and sulfasalazine do nothing.

I almost guarantee this is autoimmune in nature. Not everyone will have the easy bloodwork lab signs. My recommendation is find a rheumatologist who will let you try immunosuppressants. Keep looking until you find one. If they help, you have your answer. I had to fight hard for my diagnosis. I had no insurance so I waited years, until the pain was crippling and my first diagnosis was AVN. If I'd gone in when I first started having symptoms and no damage I wouldn't have gotten a diagnosis at all. After an MRI and immunosuppressants worked, the doctor conceded it was autoimmune arthritis, not AVN. Later I got that hip replaced as the other one and all the rest of my joints decayed. And every single time I moved to a new state, for some reason my records fail to transfer. New docs will occasionally get a page or two, or x-ray records for a foot or something, but nothing that shows diagnosis or medication history and EVERY time I have to fight all over to get the meds I need. The newest rheumatologist also tried to tell me in had avn in the second hip and no autoimmune condition, based on an xray. It's farcical. As to damage in other joints she just kind of shrugged. An MRI, however, showed not AVN. Based on this, I can only conclude misdiagnosis is appallingly common. You're going to do your own research and fight to have real options explored.

You've already had degenerative changes showing up. The longer you go without treatment the worse these will get.

If you're female I guarantee you will also have to fight for diagnosis and treatment, _despite the fact_ that 99% of the rheumatologists I've seen are female. They'll expect you to be docile, nice, and grateful, and to never push back or seriously question. Good luck. I suspect you'll need it.
posted by liminal_shadows at 7:53 AM on March 9, 2021 [9 favorites]


Taking back in to say my tendon issues didn't show up until I'd had the disease for more than ten years. Now soft tissue injuries from strain are horrifyingly common. *Any* unusual activity at all can set of weeks of pain, especially in tendons around the ankle. So yeah, autoimmune arthritis can involve both bone and soft tissue.
posted by liminal_shadows at 7:56 AM on March 9, 2021


Give boswellia (herbal supplement) a try. You should know within a day or two if it is helping.
posted by Grok Lobster at 8:33 AM on March 9, 2021


Elimination diets vary. What did you eliminate and for how long? My understanding is that nightshades and gluten are common triggers for rheumatoid arthritis.

If I were you, I would try adding anti-inflammatory foods and supplements to my diet, such as perhaps the aforementioned boswellia, as well as ginger and turmeric, plenty of fatty ocean fish for the omega 3s, and pineapple for the bromelaine (or take supplements for these too).

I would try raw milk, if it is available in your area, too, for the Wulzen anti-stiffness factor.

Any of these changes need to be maintained for a good long while before determining if they help or not.

Good luck finding a doctor who actually helps.
posted by Flock of Cynthiabirds at 11:34 AM on March 9, 2021


I have symmetrical arthritis, which is a hallmark of autoimmune arthritis. I have a number of other markers for inflammatory/ autoimmune illness. The Rheumatology practice did lots of tests and said I was fine(and were snotty AF). The doctor who believed I had something weird going on regarding inflammatory/ autoimmune illness is no longer in the area. I reached the point where walking was consistently very painful and not always an option.

10 years ago, I realized I was lactose intolerant, started using lactase; which didn't really deal with it. I ended up giving up dairy. My inflammatory/ autoimmune symptoms got way better. I still have a lot of joint pain, not much energy a lot of the time, but I still walk, dance and use my hands. I have had a few backsliding episodes because pizza, cheese, ice cream, and inflammation and pain returned. It may be worth a try to eliminate dairy for a couple of months. Inflammation is slow to heal, so when you try things, you have to give it time.

If you're female I guarantee you will also have to fight for diagnosis and treatment. Yep. Treat your symptoms. Use NSAIDs if you can, because inflammation is a beast. There are anti-inflammation diets, the foods are healthy and tasty, so worth incorporating into your diet.
posted by theora55 at 4:34 PM on March 9, 2021


Response by poster: RE diet: I spent two months eating nothing but chicken, rice, apples, and broccoli, and then added other foods back in slowly. So it was 3-4 months without dairy or gluten. No change (other than weight loss due to a boring diet!)

I tried boswellia for a month and turmeric for two months with no effect.

NSAIDs have no effect when taken for a few days at a time; is it likely they will if I take them continuously?
posted by metasarah at 5:17 PM on March 9, 2021


Gifted rheumatologists are among the most difficult specialists to find. They are the detectives of medicine, who painstakingly piece together the puzzles that patients bring to them. It's very difficult to find a good one, and not uncommon to have to try several before you find one who is able to put together your puzzle. It's also true that a rheumatologist with experience, say mid-career rather than just out of fellowship, is more likely to have seen your particular flavor of symptoms. I would ask everyone you know if they have a good rheumatologist, or if they have a friend with a good rheumatologist they would recommend. It is exceedingly likely that you will need to visit an academic medical center to find a good physician; they are most likely to be up on the latest research, treatments, and diagnostic techniques. I would just suck it up and plan to travel if you are not near a teaching hospital - it's also likely you will not get an appointment for 6 months because these specialists are in such demand. It's likely you will have to gather all your previous records yourself and send them ahead of time to the doctor after you have an appointment, so he or she can review them to get the gist of the issues before you arrive. Do NOT depend on the various doctors sending them. As a nurse in an academic specialist's practice I have seen records not show up more often than not, and it hampers the initial patient visit significantly.
Also, keep a symptom calendar with notes on what did and didn't help. All this prep will help the doctor help you.

You might wonder why there are not more rheumatologists if the demand is so high, but the answer is that so much of the work they do is thinking rather than doing high-profit procedures, thus rheumatology is not a high-profit specialty for the hospital. Also, it's a very challenging and competitive specialty that atttacts the brainiacs of medicine, who also have to be able to afford to practice in a speciatly that doesn't pay the salary of a surgeon or cardiologist. However, teaching hospitals must have research-oriented rheumatologists to teach their students and residents, fortunately.

On a personal note, I have a friend who suffered from an unknown progressive illness that caused progressively painful and weakened muscles. She tried several different rheumatologists but until she found the one who finally helped her she didn't have the correct diagnosis - polymyocitis - she couldn't access the correct treatment. It's been 5 years or so and she's doing great. She retired and moved 1000 miles away but comes back to see her rheum twice a year. She had been reduced to climbing the stairs in her home on her hands and knees, and now she's back to normal. That's the power of a really good rheumatologist.

So while I don't have specific medical advice, I think your most fruitful path forward is to find the best doctor you can find. Good luck.
posted by citygirl at 6:11 PM on March 9, 2021


Were you screened for fibromyalgia? I was diagnosed with it this fall and one of the symptoms is pain without obvious injury. For instance, my knee was in so much pain after beginning a light strength training routine that I was worried I would need surgery. When I finally got an MRI, there was just the most minimal damage to my knee.

Treatment options for fibro are not the greatest but the rheumatologist who diagnosed me said that fish oil and turmeric have been shown to help with this kind of pain. Sleep is also important.
posted by lunasol at 11:09 PM on March 9, 2021


Heated mattress pad and electric blanket have made a huge difference for me in mitigating my pain
posted by Jacqueline at 11:49 PM on March 9, 2021 [1 favorite]


Have you been evaluated by an Ehlers-Danlos specialist? There are types of EDS that don't include hypermobility. And sometimes it presents itself as overextension without accompanying flexibility.
posted by equipoise at 12:48 PM on March 10, 2021


Response by poster: Thanks all; much appreciated!
posted by metasarah at 10:48 AM on March 11, 2021


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