What The Heck Is Going On With My Leg?!
March 4, 2021 3:47 PM Subscribe
I've been having trouble with my leg for the past eight months. Its really starting to negatively effect my quality of life. I've tried a lot of things to clear whatever it is up but nothing works. More after the jump.
I've had trouble with the right side of my body for about 5 years now. First it was plantar fasciitis that finally went away completely after I got treatment from a sports therapy chiropractor. Then I had trouble with my right shoulder and lower back. Eventually that went away too. But my right knee started bothering me. I went to a good physical therapist and although we never figured out exactly what the problem was, the exercises cleared up the problem and I was pain free for a year. Until eight months ago when I started having pain in my right leg. I've been back to the P.T. but its been months of trying to figure out what is going on and nothing is helping. I'm at wits end.
The pain and other symptoms occur all over my leg. For awhile it was pain in the back of my leg right above the knee, then it was pain on the outside of my leg just below my knee that felt like a tendon attachment was hurting. I've had spasms in the muscles of my upper and lower leg. I have nerve pain where it feels like someone is scraping their fingernails down my leg nerves. I have weakness in the leg that comes and goes. I've had, what feels like, shin splint pain in my shins. Today its pain on the outside part of my knee. I've had trouble lifting my leg sometimes and other times that's fine but I cant fully bend my knee. Sitting makes it hurt more, standing in one place makes it hurt more, walking makes it hurt more.
I was running when all this occurred but I stopped that and tried to just keep walking. I walk about 2 miles a day now unless the pain flares up too much which it does regularly. I'm an active person with two big dogs to walk and lots of stairs to climb every day. This is getting really hard to live with.
What I've tried.
I've seen a physical therapist. They don't know what's going on, but I do the exercises they give me religiously. I've had a back x-ray (everything fine) when my back was hurting 3 years ago. I had a hip x-ray this summer (everything fine). I have a knee brace that sometimes helps a bit and sometimes seems to make things worse. I tried orthopedic shoe inserts that didn't seem to help and were very uncomfortable. I ice the various parts of my leg when they hurt and that helps temporarily like for an hour or so, but it only lessens the pain doesn't make it go away. I also use one of those massage guns that everyone bought during Covid and it usually helps for a day or so after use, unless I go on a walk and then the pain comes right back.
So my question is sort of multiple.
Has anyone else experienced anything like this?
If yes, what helped?
YANMD but what could be causing this?
Who should I go see about this problem?
In case its relevant...
I am a 53 year old female with flat feet, and my spine has a fairly obvious "C" shaped curve to it, though not so much as to be anything doctors have ever thought was a problem. One of my hip bones (the right one) sticks out more than the other one (always has).
I have a chiropractor appointment for tomorrow (this will be the first time I see this chiropractor, the one I saw before is in the city we used to live in and its not possible to see him again). I don't currently have a regular doctor right now but I have insurance where I don't need a referral. I just don't really know what kind of doctor I need to go to for this. I'm also not big on the regular medical establishment after they told me I'd just have to live with my plantar fasciitis or else cut a tendon, and then the chiropractor cleared it up with deep tissue massage and the Graston thing.
Thanks for anything you think might be helpful. I'm really starting to feel desperate.
I've had trouble with the right side of my body for about 5 years now. First it was plantar fasciitis that finally went away completely after I got treatment from a sports therapy chiropractor. Then I had trouble with my right shoulder and lower back. Eventually that went away too. But my right knee started bothering me. I went to a good physical therapist and although we never figured out exactly what the problem was, the exercises cleared up the problem and I was pain free for a year. Until eight months ago when I started having pain in my right leg. I've been back to the P.T. but its been months of trying to figure out what is going on and nothing is helping. I'm at wits end.
The pain and other symptoms occur all over my leg. For awhile it was pain in the back of my leg right above the knee, then it was pain on the outside of my leg just below my knee that felt like a tendon attachment was hurting. I've had spasms in the muscles of my upper and lower leg. I have nerve pain where it feels like someone is scraping their fingernails down my leg nerves. I have weakness in the leg that comes and goes. I've had, what feels like, shin splint pain in my shins. Today its pain on the outside part of my knee. I've had trouble lifting my leg sometimes and other times that's fine but I cant fully bend my knee. Sitting makes it hurt more, standing in one place makes it hurt more, walking makes it hurt more.
I was running when all this occurred but I stopped that and tried to just keep walking. I walk about 2 miles a day now unless the pain flares up too much which it does regularly. I'm an active person with two big dogs to walk and lots of stairs to climb every day. This is getting really hard to live with.
What I've tried.
I've seen a physical therapist. They don't know what's going on, but I do the exercises they give me religiously. I've had a back x-ray (everything fine) when my back was hurting 3 years ago. I had a hip x-ray this summer (everything fine). I have a knee brace that sometimes helps a bit and sometimes seems to make things worse. I tried orthopedic shoe inserts that didn't seem to help and were very uncomfortable. I ice the various parts of my leg when they hurt and that helps temporarily like for an hour or so, but it only lessens the pain doesn't make it go away. I also use one of those massage guns that everyone bought during Covid and it usually helps for a day or so after use, unless I go on a walk and then the pain comes right back.
So my question is sort of multiple.
Has anyone else experienced anything like this?
If yes, what helped?
YANMD but what could be causing this?
Who should I go see about this problem?
In case its relevant...
I am a 53 year old female with flat feet, and my spine has a fairly obvious "C" shaped curve to it, though not so much as to be anything doctors have ever thought was a problem. One of my hip bones (the right one) sticks out more than the other one (always has).
I have a chiropractor appointment for tomorrow (this will be the first time I see this chiropractor, the one I saw before is in the city we used to live in and its not possible to see him again). I don't currently have a regular doctor right now but I have insurance where I don't need a referral. I just don't really know what kind of doctor I need to go to for this. I'm also not big on the regular medical establishment after they told me I'd just have to live with my plantar fasciitis or else cut a tendon, and then the chiropractor cleared it up with deep tissue massage and the Graston thing.
Thanks for anything you think might be helpful. I'm really starting to feel desperate.
what you would actually be able to do about it if a lumbar MRI showed spine issues, I do not know, and I am not a doctor. but I know about the subjective experience of things that require an MRI to diagnose, and the answer to what you should do about these things is you should get an MRI about it. I am shocked that they stopped at x-rays when the x-rays didn't provide a clear answer.
if you have already made the chiropractor appointment you are probably not going to want to cancel it. but I would not feel safe seeing a chiropractor for these issues without having had an MRI first.
the thing to shout about in a doctor's office is the one-sided weakness & intermittent inability to lift the leg. Reporting pain is worth doing but will not reliably make a doctor alarmed for you. but this really REALLY should.
posted by queenofbithynia at 4:20 PM on March 4, 2021 [9 favorites]
if you have already made the chiropractor appointment you are probably not going to want to cancel it. but I would not feel safe seeing a chiropractor for these issues without having had an MRI first.
the thing to shout about in a doctor's office is the one-sided weakness & intermittent inability to lift the leg. Reporting pain is worth doing but will not reliably make a doctor alarmed for you. but this really REALLY should.
posted by queenofbithynia at 4:20 PM on March 4, 2021 [9 favorites]
Seconding to go to a doctor and not a chiropractor. If you don’t know which type, maybe start with a GP? Sounds like the doc who dealt with your plantar fasciitis was unhelpful but that’s not a good reason to write off the entire medical profession when you have what could be a serious medical problem - being unable to lift your leg at times sounds pretty serious to me, and more likely to get you a helpful response than the PF.
posted by penguin pie at 4:26 PM on March 4, 2021 [5 favorites]
posted by penguin pie at 4:26 PM on March 4, 2021 [5 favorites]
That really, really sounds like spinal problems to me. (I have spinal stenosis which causes me all kinds of bilateral leg trouble.)
As a non-doctor, I bet something is messing with the big nerves in your leg when they leave the spinal cord. It must not be straightforward sciatica or piriformis problems because your PT would have spotted that, but nerve compression can cause all the things you describe. (I have compression in the spine and I get pain and weakness all over the legs on bad days.)
Another thing - do you sit in a particular chair or a particular position most days? Do you have an old mattress? For me, my terrible home office chair makes my spine much, much worse - I'm pretty good on weekends because I don't sit in it. I used to have a much worse mattress that really messed up my back, too. These things didn't cause the stenosis, of course, but when I can limit my chair time and sleep on my better mattress, I get less pain and more mobility.
Anyway, an MRI is going to be a good starting point. My primary actually sent me for one.
posted by Frowner at 4:40 PM on March 4, 2021 [6 favorites]
As a non-doctor, I bet something is messing with the big nerves in your leg when they leave the spinal cord. It must not be straightforward sciatica or piriformis problems because your PT would have spotted that, but nerve compression can cause all the things you describe. (I have compression in the spine and I get pain and weakness all over the legs on bad days.)
Another thing - do you sit in a particular chair or a particular position most days? Do you have an old mattress? For me, my terrible home office chair makes my spine much, much worse - I'm pretty good on weekends because I don't sit in it. I used to have a much worse mattress that really messed up my back, too. These things didn't cause the stenosis, of course, but when I can limit my chair time and sleep on my better mattress, I get less pain and more mobility.
Anyway, an MRI is going to be a good starting point. My primary actually sent me for one.
posted by Frowner at 4:40 PM on March 4, 2021 [6 favorites]
A second physical therapist's opinion might also be in order.
posted by trig at 5:03 PM on March 4, 2021 [5 favorites]
posted by trig at 5:03 PM on March 4, 2021 [5 favorites]
This may seem like a weird question, but do you have stairs in your house that include a bend or turn of some kind?
Several years ago I moved into a house with stairs that make a right-angle turn at the top of the staircase. Not long after, I started experiencing knee problems. Eventually I figured out that I was twisting my right knee while putting weight on it as I went around that turn while descending the stairs.
I started going down the stairs more slowly and carefully after that -- sometimes putting one foot on a step, then the other foot on the same step -- and being very conscious of only rotating my legs when I wasn't putting weight on them. My knee problems soon cleared up.
A while after this, I was visiting my brother in Toronto. He was complaining of a similar knee problem. I observed that his apartment had a staircase that doubled back on itself, and I suggested that the way he went down it might be the source of his trouble.
I'm actually not sure if that ended up being the problem in his case -- I'll have to ask him -- but you might consider whether something similar is a problem for you.
posted by Artifice_Eternity at 5:07 PM on March 4, 2021 [3 favorites]
Several years ago I moved into a house with stairs that make a right-angle turn at the top of the staircase. Not long after, I started experiencing knee problems. Eventually I figured out that I was twisting my right knee while putting weight on it as I went around that turn while descending the stairs.
I started going down the stairs more slowly and carefully after that -- sometimes putting one foot on a step, then the other foot on the same step -- and being very conscious of only rotating my legs when I wasn't putting weight on them. My knee problems soon cleared up.
A while after this, I was visiting my brother in Toronto. He was complaining of a similar knee problem. I observed that his apartment had a staircase that doubled back on itself, and I suggested that the way he went down it might be the source of his trouble.
I'm actually not sure if that ended up being the problem in his case -- I'll have to ask him -- but you might consider whether something similar is a problem for you.
posted by Artifice_Eternity at 5:07 PM on March 4, 2021 [3 favorites]
Best answer: I have a lot of MSK problems, they’re concentrated on the left because a tendon injury in my ankle went undiagnosed for too long*. What can happen with something like that is, you end up compensating elsewhere in the kinetic chain, which creates an imbalance of forces on other joints, if you continue to aggravate the problem.
It is possible to have multiple joints crap out at the same time for related reasons (like the joints influencing each other) or unrelated reasons (shoulder happening to go at the same time as knee). It can be because of aging, predisposing conditions like hypermobility, or, smoking can be ruinous to tendons. You can even have multiple things wrong with one joint at the same time.
The muscle weakness, nerve pain, spasms *could* be neurological or a mix of things (scar tissue pressing against a nerve, mineral deficiency esp magnesium, maybe the pain on one side is making you favour the other so the weak side just gets weaker...). That requires clinical testing, bloodwork, and more imaging to suss out (and yes maybe a referral to a neurologist, but your point-person doc should do that).
With so much going on, you need an ally doctor who’s not going to roll their eyes at you. Someone who will not hesitate to order expensive imaging (like an MRI, which is the best for most soft tissue injuries). You also will need an ally physiotherapist, someone who’s a strong diagnostician as well. I know you’ve seen one, but some are better than others - look for someone who’s worked with competitive athletes.
(This same sort of thing happened to me over a few years. It’s the absolute worst when it’s upper and lower body at the same time, without a doubt your day to day functioning is compromised and it’s super disheartening when you don’t have answers or relief, I mean I absolutely get it.)
It’s not what’s done these days, but my experience has been that sometimes what’s needed is rest until you know how you’re aggravating things, and sometimes you just need rest for a good while. So first of all, and while you’re sorting out the doctor thing, stop walking for a couple weeks, give everything a break. Ask someone to take care of your dogs’ walks for a bit.
Secondly, orthotics shouldn’t hurt or be uncomfortable even at the start. If they’re not right, they need to be corrected. They can really help (they redistribute forces in less aggravating ways). (I wouldn’t be able to walk at all if it weren’t for my orthotics, which btw I had to get altered twice.) Just saying, you might benefit from different orthotics after all. All of this trial and error is a money pit, I know. Sometimes you don’t have another option if you want to function.
What helped me was going to a sports medicine specialist who would order the appropriate imaging for any and all problems. I had to go through *five* sports medicine specialists to find that person, because many doctors are reluctant to order MRIs ($$$). Five doctors over four years and over a dozen injuries, it was a freaking war of self-advocacy. You may have to do the same.
Regarding physio. I went to two physios before finding the one that was really great. Then also. So many parts were going off at the same time, I wasn’t actually getting anywhere with therapy for a while, it was like playing whack a mole, because for a while I just wanted the most painful part addressed and that changed week to week depending on what kind of strain I was giving myself. So I had to commit to longer and more frequent sessions for six months. That finally took care of it. (This cost $800 a month, out of pocket by the way.)
What else, the knee thing reminds me of my patellar tendinosis.
This shit ate up almost a decade of my life, between the misdiagnoses and doctors (and wait times for doctors, and wait times for MRIs). It takes patience and determination to advocate for yourself. (The treatment part is comparatively easy.) But once I found the right people, and took the right approach (systematically attacking all the injuries), managing/treating it took about a year from imaging to graduating from physio.
Again the key is a superstar sports medicine physician who does not fuck around with imaging and knows their shit. Get recommendations - ask everyone you know, scour review sites; athlete-focused clinics are usually the best.
*despite x rays and a CT scan - because those can’t catch all the issues, sometimes you need an MRI [best for soft tissue] or ultrasound. But even THEN the problem might not be captured, because of the angle, technician, machine, whatever. So the backup to all of those failures is a clinician who has killer diagnostic/clinical assessment skills, that is, someone who will order the right imaging, understands that the radiologist’s report is not necessarily the final say on the matter, and generally has solid clinical reasoning.
posted by cotton dress sock at 5:21 PM on March 4, 2021 [8 favorites]
It is possible to have multiple joints crap out at the same time for related reasons (like the joints influencing each other) or unrelated reasons (shoulder happening to go at the same time as knee). It can be because of aging, predisposing conditions like hypermobility, or, smoking can be ruinous to tendons. You can even have multiple things wrong with one joint at the same time.
The muscle weakness, nerve pain, spasms *could* be neurological or a mix of things (scar tissue pressing against a nerve, mineral deficiency esp magnesium, maybe the pain on one side is making you favour the other so the weak side just gets weaker...). That requires clinical testing, bloodwork, and more imaging to suss out (and yes maybe a referral to a neurologist, but your point-person doc should do that).
With so much going on, you need an ally doctor who’s not going to roll their eyes at you. Someone who will not hesitate to order expensive imaging (like an MRI, which is the best for most soft tissue injuries). You also will need an ally physiotherapist, someone who’s a strong diagnostician as well. I know you’ve seen one, but some are better than others - look for someone who’s worked with competitive athletes.
(This same sort of thing happened to me over a few years. It’s the absolute worst when it’s upper and lower body at the same time, without a doubt your day to day functioning is compromised and it’s super disheartening when you don’t have answers or relief, I mean I absolutely get it.)
It’s not what’s done these days, but my experience has been that sometimes what’s needed is rest until you know how you’re aggravating things, and sometimes you just need rest for a good while. So first of all, and while you’re sorting out the doctor thing, stop walking for a couple weeks, give everything a break. Ask someone to take care of your dogs’ walks for a bit.
Secondly, orthotics shouldn’t hurt or be uncomfortable even at the start. If they’re not right, they need to be corrected. They can really help (they redistribute forces in less aggravating ways). (I wouldn’t be able to walk at all if it weren’t for my orthotics, which btw I had to get altered twice.) Just saying, you might benefit from different orthotics after all. All of this trial and error is a money pit, I know. Sometimes you don’t have another option if you want to function.
What helped me was going to a sports medicine specialist who would order the appropriate imaging for any and all problems. I had to go through *five* sports medicine specialists to find that person, because many doctors are reluctant to order MRIs ($$$). Five doctors over four years and over a dozen injuries, it was a freaking war of self-advocacy. You may have to do the same.
Regarding physio. I went to two physios before finding the one that was really great. Then also. So many parts were going off at the same time, I wasn’t actually getting anywhere with therapy for a while, it was like playing whack a mole, because for a while I just wanted the most painful part addressed and that changed week to week depending on what kind of strain I was giving myself. So I had to commit to longer and more frequent sessions for six months. That finally took care of it. (This cost $800 a month, out of pocket by the way.)
What else, the knee thing reminds me of my patellar tendinosis.
This shit ate up almost a decade of my life, between the misdiagnoses and doctors (and wait times for doctors, and wait times for MRIs). It takes patience and determination to advocate for yourself. (The treatment part is comparatively easy.) But once I found the right people, and took the right approach (systematically attacking all the injuries), managing/treating it took about a year from imaging to graduating from physio.
Again the key is a superstar sports medicine physician who does not fuck around with imaging and knows their shit. Get recommendations - ask everyone you know, scour review sites; athlete-focused clinics are usually the best.
*despite x rays and a CT scan - because those can’t catch all the issues, sometimes you need an MRI [best for soft tissue] or ultrasound. But even THEN the problem might not be captured, because of the angle, technician, machine, whatever. So the backup to all of those failures is a clinician who has killer diagnostic/clinical assessment skills, that is, someone who will order the right imaging, understands that the radiologist’s report is not necessarily the final say on the matter, and generally has solid clinical reasoning.
posted by cotton dress sock at 5:21 PM on March 4, 2021 [8 favorites]
seems complicated. otoh, the simplest thing it could be is IT band trouble - which can hurt like knife goin in - and sometimes creates a bunch of referred pain.
posted by j_curiouser at 5:25 PM on March 4, 2021 [2 favorites]
posted by j_curiouser at 5:25 PM on March 4, 2021 [2 favorites]
(Want to add: I spoke in the present tense about my injuries - I graduated physio, but I still have to be mindful, sometimes pain will creep back in and I refer to my notes on managing it, and I’m barred from certain activities. But like I can do my exercises, walk for cardio, lift most things, function in the home - all of which I couldn’t do for a while. But I don’t think an injury ever goes back to 100%/normal/pre injury status. Just to set expectations.)
posted by cotton dress sock at 5:32 PM on March 4, 2021 [1 favorite]
posted by cotton dress sock at 5:32 PM on March 4, 2021 [1 favorite]
Physical Therapy is rehab, you want an orthopedist, who will a) fix it, and b) give the PT some boundaries to work within.
It's hard to tell like this. Your pain that is moving around the affected area could totally be compensation as you favor different ways to walk or stand or sit to take the load off the pain, which would help explain the problem moving around. If you decided to start using a cane, the pain might even move to your other leg! So, orthopedist.
posted by rhizome at 8:57 PM on March 4, 2021 [1 favorite]
It's hard to tell like this. Your pain that is moving around the affected area could totally be compensation as you favor different ways to walk or stand or sit to take the load off the pain, which would help explain the problem moving around. If you decided to start using a cane, the pain might even move to your other leg! So, orthopedist.
posted by rhizome at 8:57 PM on March 4, 2021 [1 favorite]
Best answer: i want to chime in and affirm your decision to see a chiro (if you want to). just like PTs and GPs, and everyone in the health entourage, YMMV by practitioner. good chiros are trained/qualified to know when not to treat you if there is a possibility of a spine injury. i'm sure the chiro you're going to see came with some referral or review that made you think they're worth a bet of trust. it sounds like you are doing a good job navigating these terribly murky waters of injury we all sometimes fall into; there is nothing particularly risky about a chiro.
i can relate to a lot of what you're talking about (in my case, going from all-day runs to barely being able to walk to the dog park, without any clear diagnosis). +1 to everyone above encouraging you try other specialists, because not every PT/GP/etc will be a fit with you or your particular case. my own entourage includes PT, RMT, GP, chiro, kinesiologist. i'm now on my third physio (i know, i know -- but i'm hopeful for this new one) and i'm pretty sure my glutes should be made of steel by now for all the exercises they have me doing. i'm also waiting for a sports med specialist booking, and have done the x-rays and blood work basics. i don't think there's anything to suggest that you haven't covered. everyone's body is different, and it's sometimes not simple to find the key(s) you need to unlock an injury. keep going.
you are moving forwards even if it doesn't feel like it some days. all of this, even the false starts, is stuff you need to go through to find what will work for your body.
something i remind myself often: i'm not after a diagnosis, i'm looking for a plan to recover. ultimately it doesn't matter if my PT can or can't definitively find the ultimate cause. and like @cotton dress socks says above, it's not unreasonable to think there is more than one issue at once. i try to keep focused on who is helping me formulate a plan to recover. and yeah, it's a lot of try, try again/more. wishing you lots of luck and better health soon.
posted by tamarack at 9:55 PM on March 4, 2021 [2 favorites]
i can relate to a lot of what you're talking about (in my case, going from all-day runs to barely being able to walk to the dog park, without any clear diagnosis). +1 to everyone above encouraging you try other specialists, because not every PT/GP/etc will be a fit with you or your particular case. my own entourage includes PT, RMT, GP, chiro, kinesiologist. i'm now on my third physio (i know, i know -- but i'm hopeful for this new one) and i'm pretty sure my glutes should be made of steel by now for all the exercises they have me doing. i'm also waiting for a sports med specialist booking, and have done the x-rays and blood work basics. i don't think there's anything to suggest that you haven't covered. everyone's body is different, and it's sometimes not simple to find the key(s) you need to unlock an injury. keep going.
you are moving forwards even if it doesn't feel like it some days. all of this, even the false starts, is stuff you need to go through to find what will work for your body.
something i remind myself often: i'm not after a diagnosis, i'm looking for a plan to recover. ultimately it doesn't matter if my PT can or can't definitively find the ultimate cause. and like @cotton dress socks says above, it's not unreasonable to think there is more than one issue at once. i try to keep focused on who is helping me formulate a plan to recover. and yeah, it's a lot of try, try again/more. wishing you lots of luck and better health soon.
posted by tamarack at 9:55 PM on March 4, 2021 [2 favorites]
Seconding everyone else above when they say ortho and MRI. When my knee first went bad it happened relatively quickly, so the physical therapist and then the regular GP I went to thought it was a meniscal tear, even after Xrays, and treated it accordingly. The treatments didn't help, the knee got worse.
I went to a womens sports injury ortho and the first thing she did was order an MRI. My bone on bone arthritis was diagnosed and I started getting the correct treatment immediately, to much relief.
A sports injury doc and MRIs are the way to go IMO.
posted by newpotato at 1:29 AM on March 5, 2021 [2 favorites]
I went to a womens sports injury ortho and the first thing she did was order an MRI. My bone on bone arthritis was diagnosed and I started getting the correct treatment immediately, to much relief.
A sports injury doc and MRIs are the way to go IMO.
posted by newpotato at 1:29 AM on March 5, 2021 [2 favorites]
I want to second trig's suggestion of a second or even third opinion. I was suffering from something that sounds similar-ish for three months, receiving physiotherapy for it but getting no relief. It was so bad that I couldn't work full time, as I couldn't sit/stand for 8 hours a day. I asked for a second opinion from a physio within the same practice, but there was no additional progress. I asked friends for recommendations and went to see a third physio - she diagnosed it immediately (piriformis syndrome) and two sessions plus two sessions of dry needling and I was pain free.
posted by unlaced at 4:37 AM on March 5, 2021 [2 favorites]
posted by unlaced at 4:37 AM on March 5, 2021 [2 favorites]
Best answer: Going to see an ortho is a good idea, but have you been in to see a rheumatologist? It sounds like you're having some joint involvement so it's not unreasonable. But as an internal medicine doctor told me, "I'm sending you to a rheumatologist because your symptoms make no sense to me, but there's something going on here, and rheumatologists are good at diagnosing this kind of thing."
I had a similar experience to you - clean xrays, clean MRI, various joint problems but also back problems. Diffuse problems but bad enough to keep me from running, etc. I was ultimately diagnosed with hypermobile Ehlers Danlos Syndrome.
I'm not saying you have EDS - although it is hard to get diagnosed, and if you have hypermobile joints (i.e. were you a contortionist as a kid?) EDS is something that could be considered. i'm just saying that a good rheumatologist can be able to take all these disparate symptoms and tests and narrow in on a diagnosis.
posted by litera scripta manet at 12:25 PM on March 5, 2021 [2 favorites]
I had a similar experience to you - clean xrays, clean MRI, various joint problems but also back problems. Diffuse problems but bad enough to keep me from running, etc. I was ultimately diagnosed with hypermobile Ehlers Danlos Syndrome.
I'm not saying you have EDS - although it is hard to get diagnosed, and if you have hypermobile joints (i.e. were you a contortionist as a kid?) EDS is something that could be considered. i'm just saying that a good rheumatologist can be able to take all these disparate symptoms and tests and narrow in on a diagnosis.
posted by litera scripta manet at 12:25 PM on March 5, 2021 [2 favorites]
Best answer: I like everyone else’s suggestions to get more imaging, find good providers who take you seriously, etc.
One off the wall thing to consider if the traditional medicine route doesn’t help is a really good pelvic floor physical therapist. Pelvic floor PT can sound a little weird before you go because it’s a combo of external and internal work, but a good PT won’t let it be weird in practice. It was actually less invasive/uncomfortable than a standard pelvic exam in my opinion (no stirrups, lots of lube, someone really taking their time to make sure you’re comfortable at all points, etc.).
I mention this option specifically because of the “sidedness” of your problem and because you mention your hip bone sticking out more on that side - I also had weird pain in different parts of my right side and my PT took one look at me and was like “well yeah, your whole pelvis is rotated on that side.” In my case it probably happened during childbirth but even if you haven’t given birth, bodies are weird and you can get weird pelvic floor trigger points that mess up a lot of other things. Definitely go the MRI route first, but if you’re getting nowhere after that, pelvic floor PT might help. I plan to go back ASAP after COVID calms down. Happy to talk via MeMail if you have any questions.
posted by bananacabana at 7:06 PM on March 5, 2021 [1 favorite]
One off the wall thing to consider if the traditional medicine route doesn’t help is a really good pelvic floor physical therapist. Pelvic floor PT can sound a little weird before you go because it’s a combo of external and internal work, but a good PT won’t let it be weird in practice. It was actually less invasive/uncomfortable than a standard pelvic exam in my opinion (no stirrups, lots of lube, someone really taking their time to make sure you’re comfortable at all points, etc.).
I mention this option specifically because of the “sidedness” of your problem and because you mention your hip bone sticking out more on that side - I also had weird pain in different parts of my right side and my PT took one look at me and was like “well yeah, your whole pelvis is rotated on that side.” In my case it probably happened during childbirth but even if you haven’t given birth, bodies are weird and you can get weird pelvic floor trigger points that mess up a lot of other things. Definitely go the MRI route first, but if you’re getting nowhere after that, pelvic floor PT might help. I plan to go back ASAP after COVID calms down. Happy to talk via MeMail if you have any questions.
posted by bananacabana at 7:06 PM on March 5, 2021 [1 favorite]
This thread is closed to new comments.
You should see an orthopedist and then possibly they may refer you to a neurologist. The orthopedist may not be willing to see you without a physical with bloodwork first from a GP who will probably also order imaging, the results of which would go to the orthopedist in advance of your appointment. You'll have to talk to the orthopedist's office to find out if they'll see you without all that.
posted by Lyn Never at 4:13 PM on March 4, 2021 [14 favorites]