What might be causing these joint/ankle problems?
January 10, 2015 10:52 PM Subscribe
It is really unbelievably easy for me to sprain my ankles. It can literally happen when I’m walking from my bedroom to my kitchen, or even just while standing. My other joints aren’t so great, either. Any ideas for what might cause this?
I’ve seen a number of doctors and specialists about this, but no one’s made a definitive diagnosis. Metafilter once saved my life by correctly diagnosing an allergic reaction (Stevens Johnson) that a doctor missed. This seems like a longshot, but I can’t think of anything else to try.
It’s hard to say when this all started because it’s something that’s gradually gotten worse over a long time period. I used to (over a decade ago) never sprain my ankles. Then I had a couple of bad sprains, and I’ve been prone to sprains ever since. Starting about five years ago, I started repeatedly spraining my ankle the same way. I’d take a fall while climbing, where I’d be leaned forward with my legs too straight to absorb the impact, which would cause my ankle to dorsiflex (and not roll towards the outside or inside).
If I immediately iced/wrapped the ankle, and stayed off of it, it would be feel pretty solid after a couple days. In the instances where I couldn’t do that, it would be painful for a week or two. After years of this, my doctor was worried that I might be damaging the cartilage. She ordered an MRI, which showed some bone bruising but no other damage, and I carried on with activities as usual.
About a year and a half year ago, I started spraining my ankle outside of climbing. The type of pain feels pretty similar to the climbing injury, but the circumstances that cause the injury are less specific. For the first few months of that, it would always be in a position where my weight wasn’t stably above my foot (for example, when pushing off of my left foot to get into the driver’s seat of a car), but it eventually progressed to the point where it could happen any time my ankle was weighted, including during normal walking or standing. I’ve been seeing a physical therapist about this for over a year now, and doing the prescribed exercises regularly, but that hasn’t really fixed things.
Over that time, I’ve had a couple of x-rays (that don’t show anything out of the ordinary), and an MRI (which shows some bone bruising, but in a location that seems to indicate that bruising isn’t related, and some “regular” wear).
My physical therapist mentioned that I have a lot of mobility in my ankles and speculates that I’ve damaged my ankle stabilizers enough that it’s just extremely easy to sprain my ankles. The common pattern is that the exercises seem to very gradually cause things to improve, and then I manage to injure an ankle which causes things to get much worse. The last time this happened was about a month ago, when I re-injured my left ankle while sitting. Not during the process of sitting down, but while I was sitting still, crossed-legged, on the floor. I felt a twinge of pain and my ankle was pretty swollen for a few days. It still hasn’t really recovered. If I walk around pretty much at all, my ankle will swell up again for a couple of days.
When things are bad, as they are now, I basically only leave the apartment for doctor’s appointments and to do physical therapy. In order to be able to continue regular activities, I’ve tried just ignoring the pain and just walking around like normal, but that causes the pain and swelling to get worse, to the point where it gets painful enough that I can’t sleep because of the pain.
I’ve asked basically every medical professional I’ve seen about the idea of getting a wheelchair in order to be able to get around, but they’ve all very vehemently objected to the idea. I don’t think my words can do justice to how strongly they’re against the idea.
My doctor speculates that I’m just genetically prone to joint problems, which is pretty non-specific and doesn’t suggest any sort of fix. I can see why she’d say that -- some other joint problems I’ve had include the following. If I put a shear force on my wrist (like arm wrestling), my wrist will give out and pop before my strength fails (loudly enough that other people in the room usually comment on it). The pop itself isn’t painful, but my wrist will hurt for weeks afterwards. Back when I still climbed, my middle finger would often pop, in a similarly loud fashion. In the past, I’ve had shoulder, knee, and neck issues that have been fixed with some physical therapy, etc. Also, I have some jaw pain (TMJ) that developed over the past year. I can’t open my mouth very widely anymore and it’s painful to chew.
I’ve seen a few specialists for the ankle/joint thing. One was a foot/ankle ortho person, who basically said that, based on the MRI, I wasn’t a candidate for surgery, and didn’t have anything to add. One was a psychiatrist (to check to see if it’s psychosomatic, I suppose). He decided it didn’t sound like it was a mental thing, so that was only useful insofar as it ruled out a possible cause. I saw another one to get a second opinion because it would be pretty awesome if it were psychosomatic, but the second person I saw agreed that the problem wasn’t in my head. One was a physical rehab specialist who suggested an extra physical therapy exercise. It’s possible that’s making some difference, but if so, it’s subtle enough that the impact isn’t obvious.
My dad has a history of joint issues, but I was given the standard test for autoimmune related joint problems, and those tests were negative, so it doesn’t seem to be that.
As it is now, I seem to be stuck. None of the doctors I’ve seen know what’s causing this, and the current course of physical therapy isn’t causing things to improve to the point where I don’t regularly re-injure one of my ankles.
Does this set of symptoms sound familiar to anyone? Is there a fix? Or even a doctor or specialist I might see who might be helpful? It would be especially helpful if there was a specialist in Madison, WI, that I could see. I don’t know how I’d get on a plane to see someone elsewhere when I’m literally incapable of sitting for an hour without re-injuring myself.
Apologies if some of the dates listed don’t quite line up. I originally wrote this in July but then didn’t post it because I was in the middle of quitting my job at a big tech company whose products most mefites probably use daily (my manager was really angry that I was sometimes working from home and after a series of increasingly angry meetings he demanded that I produce a doctor’s note immediately, but providing a doctor’s note only seemed to increase his anger level), which was pretty stressful. I forgot about the possibility of posting to ask mefi for a while, but I was reminded of this recently, so here I tried to edit this to fix up the dates, but I might have missed some.
I’ve seen a number of doctors and specialists about this, but no one’s made a definitive diagnosis. Metafilter once saved my life by correctly diagnosing an allergic reaction (Stevens Johnson) that a doctor missed. This seems like a longshot, but I can’t think of anything else to try.
It’s hard to say when this all started because it’s something that’s gradually gotten worse over a long time period. I used to (over a decade ago) never sprain my ankles. Then I had a couple of bad sprains, and I’ve been prone to sprains ever since. Starting about five years ago, I started repeatedly spraining my ankle the same way. I’d take a fall while climbing, where I’d be leaned forward with my legs too straight to absorb the impact, which would cause my ankle to dorsiflex (and not roll towards the outside or inside).
If I immediately iced/wrapped the ankle, and stayed off of it, it would be feel pretty solid after a couple days. In the instances where I couldn’t do that, it would be painful for a week or two. After years of this, my doctor was worried that I might be damaging the cartilage. She ordered an MRI, which showed some bone bruising but no other damage, and I carried on with activities as usual.
About a year and a half year ago, I started spraining my ankle outside of climbing. The type of pain feels pretty similar to the climbing injury, but the circumstances that cause the injury are less specific. For the first few months of that, it would always be in a position where my weight wasn’t stably above my foot (for example, when pushing off of my left foot to get into the driver’s seat of a car), but it eventually progressed to the point where it could happen any time my ankle was weighted, including during normal walking or standing. I’ve been seeing a physical therapist about this for over a year now, and doing the prescribed exercises regularly, but that hasn’t really fixed things.
Over that time, I’ve had a couple of x-rays (that don’t show anything out of the ordinary), and an MRI (which shows some bone bruising, but in a location that seems to indicate that bruising isn’t related, and some “regular” wear).
My physical therapist mentioned that I have a lot of mobility in my ankles and speculates that I’ve damaged my ankle stabilizers enough that it’s just extremely easy to sprain my ankles. The common pattern is that the exercises seem to very gradually cause things to improve, and then I manage to injure an ankle which causes things to get much worse. The last time this happened was about a month ago, when I re-injured my left ankle while sitting. Not during the process of sitting down, but while I was sitting still, crossed-legged, on the floor. I felt a twinge of pain and my ankle was pretty swollen for a few days. It still hasn’t really recovered. If I walk around pretty much at all, my ankle will swell up again for a couple of days.
When things are bad, as they are now, I basically only leave the apartment for doctor’s appointments and to do physical therapy. In order to be able to continue regular activities, I’ve tried just ignoring the pain and just walking around like normal, but that causes the pain and swelling to get worse, to the point where it gets painful enough that I can’t sleep because of the pain.
I’ve asked basically every medical professional I’ve seen about the idea of getting a wheelchair in order to be able to get around, but they’ve all very vehemently objected to the idea. I don’t think my words can do justice to how strongly they’re against the idea.
My doctor speculates that I’m just genetically prone to joint problems, which is pretty non-specific and doesn’t suggest any sort of fix. I can see why she’d say that -- some other joint problems I’ve had include the following. If I put a shear force on my wrist (like arm wrestling), my wrist will give out and pop before my strength fails (loudly enough that other people in the room usually comment on it). The pop itself isn’t painful, but my wrist will hurt for weeks afterwards. Back when I still climbed, my middle finger would often pop, in a similarly loud fashion. In the past, I’ve had shoulder, knee, and neck issues that have been fixed with some physical therapy, etc. Also, I have some jaw pain (TMJ) that developed over the past year. I can’t open my mouth very widely anymore and it’s painful to chew.
I’ve seen a few specialists for the ankle/joint thing. One was a foot/ankle ortho person, who basically said that, based on the MRI, I wasn’t a candidate for surgery, and didn’t have anything to add. One was a psychiatrist (to check to see if it’s psychosomatic, I suppose). He decided it didn’t sound like it was a mental thing, so that was only useful insofar as it ruled out a possible cause. I saw another one to get a second opinion because it would be pretty awesome if it were psychosomatic, but the second person I saw agreed that the problem wasn’t in my head. One was a physical rehab specialist who suggested an extra physical therapy exercise. It’s possible that’s making some difference, but if so, it’s subtle enough that the impact isn’t obvious.
My dad has a history of joint issues, but I was given the standard test for autoimmune related joint problems, and those tests were negative, so it doesn’t seem to be that.
As it is now, I seem to be stuck. None of the doctors I’ve seen know what’s causing this, and the current course of physical therapy isn’t causing things to improve to the point where I don’t regularly re-injure one of my ankles.
Does this set of symptoms sound familiar to anyone? Is there a fix? Or even a doctor or specialist I might see who might be helpful? It would be especially helpful if there was a specialist in Madison, WI, that I could see. I don’t know how I’d get on a plane to see someone elsewhere when I’m literally incapable of sitting for an hour without re-injuring myself.
Apologies if some of the dates listed don’t quite line up. I originally wrote this in July but then didn’t post it because I was in the middle of quitting my job at a big tech company whose products most mefites probably use daily (my manager was really angry that I was sometimes working from home and after a series of increasingly angry meetings he demanded that I produce a doctor’s note immediately, but providing a doctor’s note only seemed to increase his anger level), which was pretty stressful. I forgot about the possibility of posting to ask mefi for a while, but I was reminded of this recently, so here I tried to edit this to fix up the dates, but I might have missed some.
IANAD, I am a massage therapist that studies pain and nervous system stuff for fun. Sprains making future sprains more likely is well known, but beyond that if degenerative / auto-immune issues have been ruled out (as in have you already gone through the things katemonster has suggested), I wonder if you're having an issue with central sensitization. Pain is not a correlate of injury, it's a correlate of how much threat your brain thinks your tissues are under. If you keep re-injuring the same location your brain might decide to ratchet up the pain levels every time, as a sort of unfair "hey stop hurting yourself, no seriously, for real this time" message.
Your story about the pain starting up while you weren't loading your ankle, much less rolling it, makes me wonder about this, as if it's gotten to the point where just having your ankle in a particular position is enough to set off the threat alarms in your brain. Inflammation can occur on the whim of the nervous system too, there doesn't have to be injured tissue involved for that process to get going. If that injury happened months ago, how did it resolve? What is going on with it now? There are PTs out there who have knowledge of modern pain science and the nervous system, although I don't know how to help you find one where you live.
posted by MillMan at 11:46 PM on January 10, 2015
Your story about the pain starting up while you weren't loading your ankle, much less rolling it, makes me wonder about this, as if it's gotten to the point where just having your ankle in a particular position is enough to set off the threat alarms in your brain. Inflammation can occur on the whim of the nervous system too, there doesn't have to be injured tissue involved for that process to get going. If that injury happened months ago, how did it resolve? What is going on with it now? There are PTs out there who have knowledge of modern pain science and the nervous system, although I don't know how to help you find one where you live.
posted by MillMan at 11:46 PM on January 10, 2015
Unstable joints can be a symptom of Ehlers-Danlos--I know somebody who has that. I think there are some milder variations of it.
posted by foxfirefey at 12:07 AM on January 11, 2015 [5 favorites]
posted by foxfirefey at 12:07 AM on January 11, 2015 [5 favorites]
Yeah, I had the same thought as foxfirefey. EDS has a bunch of different ways of showing up, and chronic joint instability/hypermobility/dislocation/subluxation are just some of the many exciting ways it can fuck your shit up. In general for the hypermobility issues the main thing you do it strengthen the surrounding/supporting muscles enough so they hold you together better.
posted by poffin boffin at 12:41 AM on January 11, 2015 [4 favorites]
posted by poffin boffin at 12:41 AM on January 11, 2015 [4 favorites]
I read this article a few years ago and have been wondering about it ever since: How to Fix Bad Ankles.
If nothing else, it might be worth a try.
Hope you figure out what is causing problems with you ankles soon. It doesn't sound like fun.
posted by sciencegeek at 5:03 AM on January 11, 2015 [1 favorite]
If nothing else, it might be worth a try.
Hope you figure out what is causing problems with you ankles soon. It doesn't sound like fun.
posted by sciencegeek at 5:03 AM on January 11, 2015 [1 favorite]
A very long shot, but have you been checked for vitamin deficiencies?
posted by LoonyLovegood at 5:42 AM on January 11, 2015
posted by LoonyLovegood at 5:42 AM on January 11, 2015
See a better physic therapist - one who sees the body as a system not just one part. My PT found that I had weak stomach and hip muscles and that I was more flexible than average so I didn't have enough muscle strength stabilizing my wiggly joints. I had to do specific stomach crunches and squats to support my knee & ankle alignment as well as stand on one foot to improve my proprioception.
posted by St. Peepsburg at 5:56 AM on January 11, 2015 [2 favorites]
posted by St. Peepsburg at 5:56 AM on January 11, 2015 [2 favorites]
IANAD, but I am a healthcare practitioner. If one of my patients presented with this story, I would recommend first seeing a rheumatologist for a full workup. If everything with the rheumatologist is negative, I would look into vitamin deficiencies. Are you by any chance a vegetarian? Vegetarians sometimes (obviously not always) present with joint laxity, and correcting vitamin deficiencies can be helpful.
Also, I'm not sure of your gender, but women who are pregnant or nursing (or were recently pregnant or nursing) can have hypermobile joints as a result of softening / stretching ligaments in preparation for birth. If you were ever pregnant, this could have set you on a path where the joints became too mobile and then were further damaged from repeated use.
But I would start with the rheumatologist. Good luck to you!
posted by JubileeRubaloo at 7:10 AM on January 11, 2015
Also, I'm not sure of your gender, but women who are pregnant or nursing (or were recently pregnant or nursing) can have hypermobile joints as a result of softening / stretching ligaments in preparation for birth. If you were ever pregnant, this could have set you on a path where the joints became too mobile and then were further damaged from repeated use.
But I would start with the rheumatologist. Good luck to you!
posted by JubileeRubaloo at 7:10 AM on January 11, 2015
I would ask for a referral to a physiatrist for rehab. Like St Peepsburg, I suspect that your ankle may be falling victim to faulty movement patterns elsewhere in the body. Have the physiatrist refer to new PT.
Having used a wheelchair I can understand why your doctors wouldn't want you to get one. The conversation to have with your doctors is that your pain is not manageable and your quality of life is suffering. Insist that the doctors address the problem but let the doctors prescribe the solution. Try to stay open minded.
I am also on board with those who say look at diet. Weight management is critical. You might do this in conjunction with adding a personal trainer or kinesiologist to your team. You need an upper body strength program in addition to rehab to make your now inevitable stays on crutches less painful. This is a serious fitness effort.
posted by crazycanuck at 7:27 AM on January 11, 2015
Having used a wheelchair I can understand why your doctors wouldn't want you to get one. The conversation to have with your doctors is that your pain is not manageable and your quality of life is suffering. Insist that the doctors address the problem but let the doctors prescribe the solution. Try to stay open minded.
I am also on board with those who say look at diet. Weight management is critical. You might do this in conjunction with adding a personal trainer or kinesiologist to your team. You need an upper body strength program in addition to rehab to make your now inevitable stays on crutches less painful. This is a serious fitness effort.
posted by crazycanuck at 7:27 AM on January 11, 2015
On reread since you have seen the physiatrist you should go back to the one you saw and say you took the advice but you're not better. Get a next step from that person.
posted by crazycanuck at 7:30 AM on January 11, 2015
posted by crazycanuck at 7:30 AM on January 11, 2015
Hey, I have Hypermobile Ehlers-Danlos Syndrome, and you sound like me. There are relatively few doctors around the world who specialize in treating the syndrome, and it can be a long wait to see one. If you read up on it and it sounds like you, feel free to message me for names of doctors and treatment suggestions.
posted by femmegrrr at 10:43 AM on January 11, 2015 [4 favorites]
posted by femmegrrr at 10:43 AM on January 11, 2015 [4 favorites]
You don't mention ankle braces, have you tried using them as protection?
posted by the agents of KAOS at 1:35 PM on January 11, 2015
posted by the agents of KAOS at 1:35 PM on January 11, 2015
If you've already done a blood test that rules out autoimmune diseases, I'm not sure a rheumatologist will be able to do more for you (or that was my experience, anyway).
A geneticist could identify most EDS subtypes, including the one carrying cardiovascular risk (but not hypermobility type, which is determined clinically. One thing with that is that as femmegrr said, there isn't a lot of awareness about connective tissue disorders, and when there is, what's sought is clearcut textbook signs. A person of middle age, though, might have acquired osteoarthritis or other issues that obscure prior hypermobility. So you would want to see a doctor experienced with connective tissue disorders. Same for a physiotherapist, actually.)
Not knowing what's happening to you, on top of the loss of mobility, must be scary and beyond frustrating. I'm really sorry you're going through this. Good luck, and I hope you find an answer soon.
posted by cotton dress sock at 3:01 PM on January 11, 2015 [1 favorite]
A geneticist could identify most EDS subtypes, including the one carrying cardiovascular risk (but not hypermobility type, which is determined clinically. One thing with that is that as femmegrr said, there isn't a lot of awareness about connective tissue disorders, and when there is, what's sought is clearcut textbook signs. A person of middle age, though, might have acquired osteoarthritis or other issues that obscure prior hypermobility. So you would want to see a doctor experienced with connective tissue disorders. Same for a physiotherapist, actually.)
Not knowing what's happening to you, on top of the loss of mobility, must be scary and beyond frustrating. I'm really sorry you're going through this. Good luck, and I hope you find an answer soon.
posted by cotton dress sock at 3:01 PM on January 11, 2015 [1 favorite]
Followup from the OP:
Thanks for the comments, everyone. I some of the symptoms of Ehlers-Danlos, including ones that I didn’t list in the question because they didn’t seem joint related (although there are also some symptoms that don’t line up). That sounds like it’s basically untreatable, so I hope that’s not it, but it’s definitely worth looking into. I’ll also try to get appointments with the other recommended specialists since it’s not like I have anything else to try.posted by femmegrrr at 11:54 PM on January 11, 2015 [1 favorite]
I really appreciate all the suggestions. I didn’t include details about every little thing because the question was already long enough, but I believe I’ve got the following things covered.
I’ve been tested for vitamin deficiencies more than once, and nothing’s come up. I haven’t tried any kind of elimination diets (gluten, wheat, etc.), but other than that my diet would probably be considered pretty health by most people. I’m not a vegetarian.
My physical therapist seems to be quite good at looking at the whole body. She brought up the possibility of central sensitization and had me do mobility/movement exercises that would help, etc. It’s possible that a second opinion would help, but I’ve seen a lot of physical therapists in my life (mostly from back when I spent too much time training and would get tiny nagging sports/dance injuries), and I’ve found this PT to be the most helpful PT I’ve ever met. I’ll see if I can talk to someone who specializes in connective tissue problems, though.
The weight management and general strengthening suggestions are totally reasonable given what I wrote in the original question, but considering my current condition, I don’t think those are my biggest concern. I’m currently 5’8” and ~140 lbs. From past DEXA and skinfold tests and my current condition I’d guess that I’m at around 12% BF. I’m probably close to the worst shape of my life, but I can still easily crank out 5-10 pullups, do 40-50 pushups, etc.. I have nowhere near the strength to weight ratio I had when I was climbing, but I'm still strong enough to lever myself around just using my upper body. However, my wrists can't handle that much stress and even mild to moderate stress on my wrists (e.g., using crutches or a cane) is enough to produce significant pain that lasts for a while.
I’ve tried ankle braces. There was a time, maybe a year ago (ish) when my condition wasn’t so bad and ankle braces were the difference between being able to move around without risk of injury and not being able to do much. And then things got worse.
This thread is closed to new comments.
I have genetically bad joints. Everyone in my family has backaches, bad knees, sore hips, etc., in some combination from the time we're teenagers. I sprained my ankle once when I was twelve and another time when I was 19. Since then, it's always been weak and prone to turning wrong, though the pain usually resolves more quickly than yours does. I've done exercises to strengthen it but ankles are just a mess -- ligaments don't get much blood flow, and things down at the end of your legs get even less, so it's hard for them to heal and bounce back. Once you've injured an ankle a couple of times, it's never really the same and it's ridiculously easy to re-injure.
What you describe sounds similar to my experience, though more severe. My first step would be a referral to a good rheumatologist to get a complete evaluation, then move on from there. I'm certain there are excellent rheumatologists in Madison -- you shouldn't have to travel to find a doc.
*Some of the other non-rheumatoid diseases have weird symptoms or diseases they tend to be comorbid with. For example, ankylosing spondylitis and Crohn's disease frequently co-occur. So a visit to a rheumatologist will probably involve questions that seem to have nothing to do with your joints.
**Not intended as a knock on orthopedists -- they're great at what they do. But they have a very particular set of skills, and that's evaluating the physical structure of the joint and fixing it if it's busted.
***Ditto physical therapists -- mine was great for helping me strengthen my ankle. But again, they're focused on the specific joint that's the immediate problem, rather than the overall system.
posted by katemonster at 11:35 PM on January 10, 2015