Which medical specialist(s) for chronic ankle, lower leg, foot pain

May 22, 2024 6:33 PM

Help me identify the right kind specialist for my Dr to refer me to for chronic lower leg, foot and ankle pain that is most likely the result of muscle and tendon problems (definitely including but potentially not limited to the peroneal muscles and tendons)

PT, PT, PT. I love PT. I have done PT. I will do PT again. I expect my Dr may recommend PT and I will do it. The PT practice I have gone to in the past is now too far for travel. If you highly recommend a PT (or other highly relevant specialist) in the Upper Peninsula, or if after reading the below a highly highly highly recommend a PT (or other highly relevant specialist) in San Francisco proper, please share or memail me.

But I suspect some specialist assessment or diagnostic may be needed, hence my question -- what kind?

I'm seeing a brand new PCP next week. My old beloved PCP left OneMedical because of Amazon's enshittification. I suppose I could drop OneMed also but I haven't yet found an alternative.

IMPORTANT: 100% uninterested in any "Your doctor will know exactly the right specialist to recommend." Extensive medical history does not support this. To passively wait for the Dr herself to do the selection -- AND happen to successfully choose a capable specialist from her computer's recommendation rolodex -- is not an option I'm entertaining. I will be an informed participant in the process, hopefully prepared ahead-of-time by the recommendations of relevantly experienced others here at AskMe. I am choosing quite consciously & for very good reasons to take an active role in this process, after having in the past spent entirely too much time and money deferring passively to Drs in a system that disincentivizes them from careful selection of referrals or effective management of complex cases.

Are you done with the soapbox?
-- Yes, thank you.

So what's happening? :
-- Walking a half mile or more that involves any sort of upwards incline will be slightly but not very painful while I'm walking, but the next day or day after there will be a constant aching pain in my feet/ankles/lower legs so intense that walking at all becomes very unpleasant and standing in place (e.g. at the kitchen counter prepping food; or showering) becomes EXTREMELY unpleasant.
-- BUT: I can go to the gym and get on the elliptical or similar machines for several minutes -- enough time to get my HR up to where my cardiologist wants me to get it -- and i will feel GREAT. NO PAIN. Sweet, sweet endorphin rush to fuel my inner junkie. BUT, next day my feet will be doomed, as described above.

How long has this been happening?
-- the debilitation has been the better part of a decade, but also a decade prior to that but at a more "manageable" level. I'm now almost 50, management is generally in decline

Have you gotten any tests for this?
Yes I have undergone extensive testing for this condition.
The problem IS NOT :
-- Vascular
-- Nuerologic (e.g. extensive nerve conduction studies and the like)
-- Exertional Compartment Syndrome
-- Plantar Fasciitis
-- Diabetic
-- Peripheral Neuropathy
-- Related to any known bone injuries
-- Spinal Stenosis

What part of the feet has pain?
Tops, sides (outer edges) ; upper arch ; around the ankles ; beneath the ankles and sides of heels. If there's any pain on the bottom of foot or bottom of heel, I can't tell

What part of legs have pain?
-- The muscles to either side of the achilles.
-- The peroneals.
-- Maybe others, hard to identify.

What provides relief?
Getting off my feet, ideally laying down for an extensive period. Much relief instantly.

Do drugs help?
-- I'm unable to take ibuprofen or NSAIDs (contraindicated with other medication) so I can't say if anti-inflammatories work
-- BUT, soaking my feet in ice does seem to help somewhat. Not entirely, but quite a bit. I don't have a situation where I can get much at all of my lower legs into an ice bath.
-- Also, massaging / rolling my calves or the muscles to the sides of the achilles (and upwards) can sometimes help somewhat.

Any history of injuries ?
The problem is possibly related to...
-- a weird habit when I was a child, and sometimes as an adult, when I would repeatedly do this... movement with my ankle, kinda like a popping (but I don't think it was the ankle bones, that gave me the sense of a stretched rubber band being plucked or snapped. it wasn't ver painful, it was just a weird habit., but I did it A LOT. In the anatomy texts it looks like the peroneal tendons could have been that rubber band I thought was only in my head.
-- Muscle weakness due to long periods of underuse AND periods of extreme overuse (overly extensive hiking ; running) after periods of underuse with no ramping up
-- a decades-long inability to stop exercising when non-sharp pain arises or generally understanding when Enough Is Enough
-- I recall a few times in my life when I turned my ankle, perhaps got a "sprain" but did not attend to it

A specialist at the local research hospital (UCSF) did ultrasounds of my lower legs and "[something something] nerves not moving easily" so he injected a steroid (?) near/around the nerves at a couple locations. The first time the outcome was "yeah, I think maybe it sorta helps?" and the second time was Nope, no effect.

There may be more that I'm forgetting but if you've read this far, THANK YOU, I will subject you to no more.

posted by jerome powell buys his sweatbands in bulk only to Health & Fitness (18 answers total)

I learned about Exosym from MetaFilter.
posted by oceano at 7:50 PM on May 22

Rheumatologist perhaps? I've been reading more about the muscle-fascia interactions ever since I have screwed up my knee in some hard to describe way. I haven't actually looked into seeing a specialist yet because of reasons, but highly recommend Katy Bowman's latest book Rethink Your Position.
posted by spamandkimchi at 8:28 PM on May 22

I do not have exactly your problems, but have had longstanding pain issues that seem to stem for some combination of overuse and hypermobility and will share a bit of my journey in case it’’s processwise helpful. After bouncing through many specialists and PTs over the years, I took a recommendation from my (very good, found via Yelp) masseuse for a specific out of network physical therapy practice. I later got the same recommendation from my Pilates instructor - it turns out that people who work in those fields know who the good practitioners are in related fields more than doctors who don’t work alongside the same specialists and have less of a professional interest in body mechanics.

I saw two different people at that practice and stayed with the one who was a better fit for me. At this point I believe that some practitioners just have “it” - they’re very observant and committed to ongoing learning, which means that they can deal with complex cases that aren't textbook issues. My particular PT is very much focused on hands on manipulation which is exactly what I need because none of the issues are strength related.

I’m not in the Bay Area so I can’t give you her name in a useful way, but MeMail me if it would be useful to see the profile/bio of someone like that so you can go pattern match to local practices.
posted by A Blue Moon at 8:29 PM on May 22

Where I am (not the US) I would see a sports medicine specialist for that and I would also be asking for an MRI, best for soft tissue. Ultrasound results are very technique dependent.

Please don’t let anyone put steroids near your tendons again, they increase risk of rupture.

(Fully hear you. MSK specialists and rehab treatments involve a whack of unsubstantiated bullshit tbh. Some of it works for some things sometimes.)

Have you tried just giving your foot a break for a few weeks ie in an AirCast? Then get some Brooks Adrenaline or Ghost running shoes. Also want to send a shoutout to orthotics. If I didn’t have them (plus Brooks) I would, no joke, need much more extensive mobility aids.
posted by cotton dress sock at 9:30 PM on May 22 [2 favorites]

Best answer: This sounds a lot like what I've been experiencing with Achilles tendonitis and/or Achilles tendinosis, complicated by loose and torn ankle ligaments from a previous sprain or sprains. It's frustrating because it's not consistent; I can get serious pain from just standing too long some days, while other days, I walk around all day and climb stairs and I'm fine.

One thing I've found that seems to correlate with the pain is dehydration, which has been found in some studies to increase tendon tightness and therefore the risk of tearing. Temperature also seems to play a role; going outside and walking a block in colder weather often resulted in major pain, whereas it doesn't seem to be happening quite as much as it warms up. (Though ice after PT does help, even if that might seem contradictory.)

Anyway, definitely agree that a sports medicine specialist, such as an orthopedist or podiatrist, is the move. From what I experienced, insurance won't always pay for an MRI until you do X-rays, even though an X-ray won't show the situation with the soft tissue, so it might take some advocacy to get that done. İt's worth it, though—an MRI is why I know my ankle not only had an Achilles tendon problem, but also an issue with at least one other tendon and all the ligaments around the ankle due to a sprain.
posted by limeonaire at 9:35 PM on May 22 [2 favorites]

To elaborate, peroneal tendinosis if that’s what it ends up being is super painful and takes a long time to heal. For me I needed a boot and crutches. Rest sometimes is just what is necessary. Then, PT - not exercises because my tendon was too weak (tried before the boot), actually I had passive treatments which I know arent fashionable currently. Massage and electroacupuncture. Sounds like bullshit I know. You get a current through the nerves (at I think 2 Hz) which helps the nerves chill out (essentially).
posted by cotton dress sock at 9:35 PM on May 22 [1 favorite]

It won’t be a full on solution, but custom made orthotics may help if you haven’t already tried them. If I don’t wear mine and I do a lot of standing and walking, I’m in pain from my knees up to my hips within a few hours.
posted by poxandplague at 11:33 PM on May 22

Help me identify the right kind specialist for my Dr to refer me to for chronic lower leg, foot and ankle pain that is most likely the result of muscle and tendon problems...

Is this a self diagnosis or based on actual testing? Anyway, I think an orthopedic specialist would be a good person to see.
posted by Thorzdad at 4:05 AM on May 23

I had peroneal tendonitis for approximately 10 months. I saw a podiatrist and a physical therapist. Podiatry focuses exclusively on the foot and ankle and its surrounding muscles/tendons/etc. I would suggest starting there, if you haven't seen a podiatrist already.
posted by little mouth at 7:05 AM on May 23 [1 favorite]

Best answer: For what it's worth, my MRI also showed mild insertional posterior tibial tendinosis. But the orthopedist didn't seem to think that was the main reason for the chronic pain in the back of my ankle; she thought the pain was still likely from Achilles tendinosis. Whereas my PT gal reviewed the MRI results and started taping my ankle over the spot where my anterior talofibular (ATFL) ligament had been found to be completely torn, as well as the back of the ankle over the Achilles tendon. The ATFL tear hasn't hurt at all, and she said that's because apparently when it's completely torn, you often don't feel any pain from it. But the idea with taping it seems to be that the loss of that ligament is putting more stress on the other stretched-out/sprained ligaments and inflamed tendons. The MRI also showed plantar fasciopathy, likely from previously healed plantar fasciitis.

The reason I mention this is that you won't know for sure what's going on in there until you get better imaging, so definitely push them to do an MRI of the soft tissue. I feel like the PT I was doing was less targeted at first because we didn't know about the other ankle injuries, and were only focusing on the Achilles. I was getting frustrated, because I was getting mixed results from the PT in terms of my pain level day-to-day. Knowing that more of the ankle's ligaments and tendons are involved helps PT better target the exercises I'm doing.
posted by limeonaire at 7:38 AM on May 23 [1 favorite]

Best answer: a weird habit when I was a child, and sometimes as an adult, when I would repeatedly do this... movement with my ankle, kinda like a popping (but I don't think it was the ankle bones, that gave me the sense of a stretched rubber band being plucked or snapped. it wasn't ver painful, it was just a weird habit., but I did it A LOT. In the anatomy texts it looks like the peroneal tendons could have been that rubber band I thought was only in my head.

Are you still able to do this?

I'm wondering if you've got a torn peroneal retinaculum, which is the tendon that holds the peroneal tendon outside & behind the outer bump of your ankle. If it's torn, it lets the peroneal tendon sublux, or 'snap', over the bone bump. That causes dysfunction and stress to the rest of your foot/ankle system. You could have torn this long ago (or maybe yours is just naturally lax), and thus you take the snapping for normal (it's not), never reporting it to a physician.

There is a surgical repair for this (I've had it, as has a friend or two).
posted by Dashy at 7:53 AM on May 23

Is there swelling? Are there color changes in your feet when this happens? Do surface stimulae, like things rubbing on or touching your feet when they're in this painful state, feel any different than they used to?
posted by elgee at 9:55 AM on May 23

You need to see a foot and ankle specialist, or podiatrist if you can't find a foot and ankle person (they are usually in the same kind of office).

First, I'm not sure why you're continuing to do the activities that result in pain/inflammation when you know what the result will be. This results in probably micro tears of tendons or ligaments, making any recovery longer and much more difficult. Second, there are areas of the ankle, especially near the Achilles that have really crappy blood flow that makes any recovery difficult to begin with. You would probably benefit from being in a boot (if not partial/non-weight bearing) for some time) and a discussion about steroid injections to help with inflammation. Where you go from there depends on the exact diagnosis and the depth of the damage.

I had this in both ankles and it took months and months (years on one ankle). it absolutely SUCKS and isn't something to play around with. I did have surgery, as well after trying much more conservative treatment - although this isn't saying that is **your** path to recovery.

By all means, please stop exercising and go to a specialist as soon as possible. Summer in a boot is one thing - fall and winter are a whole other beast that really cramps your style. I truly hope you're feeling better in short order. My sympathies are with you.


posted by dancinglamb at 11:09 AM on May 23

I don't know *the* answer, but these are some specialties to look at who would potentially be relevant to your situation:
- physiatrists / PM&R doctors
- podiatrists
- orthopedists who specialize in the foot and ankle
- Postural Restoration physical therapy (in addition to whatever you're doing for other PT; PRI therapists focus on addressing inherent asymmetry and creating adjustments that lead to healthy whole-body movement patterns rather than, for example, strengthening specific muscles, so in my experience it's useful to do both)
- pedorthists (your podiatrist or physiatrist should be able to refer you though if you do need customized help with your shoes)

To clarify: by Upper Peninsula, you mean something in the Bay Area in California, not the Upper Peninsula of Michigan, correct? Because those are two very different environments for getting access to specialist healthcare providers! When I hear UP I think the Yoop, as in snow and Lake Superior!
posted by cnidaria at 6:57 PM on May 23

For podiatrists I like Katherine chou and Alicia knee.
posted by bookworm4125 at 7:39 PM on May 23

I would recommend seeing a rheumatologist. They are often the specialists most capable of helping with the less straightforward cases. That's how I got diagnosed with hyper mobile EDS after years of useless PT and misdiagnosis and chronic pain/joint problems.
posted by litera scripta manet at 7:45 PM on May 23

What kinds of doctors have you seen previously? Who ruled out all those conditions, and what kind of "specialist" did you see at UCSF who gave you an explanation you didn't understand and steroids?
posted by decathecting at 2:00 PM on May 31

Response by poster: @ decathecting
What kinds of doctors have you seen previously?
Medical Doctors. Accredited. Two sports medicine Dr's (at UCSF). Two neurologists (one at UCSF, one at Sutter). A vascular surgeon (Sutter or PAMF). An orthopedic specialist (don't recall, probably UCSF). A spinal surgeon (UCSF). Two doctors of PT.

Who ruled out all those conditions,
See above.

and what kind of "specialist" did you see at UCSF
I don't understand the use of quotes around specialist. Are you skeptical of medical specialists, or that I saw one whose role is commonly referred to as a specialist?

who gave you an explanation you didn't understand and steroids?
Me: To be clear, I understood it at the time the procedure was performed but at the time of the AskMe posting I didn't have the exact medical jargon readily accessible in the gray matter. But to your question: one of the two Sport Medicine Dr's mentioned above who is a professor at UCSF. His bio says he's an MD MPH and has certifications from the following:
- Sports Medicine, American Board of Family Medicine
- Family Medicine, American Board of Family Medicine

Does that answer your questions?
posted by jerome powell buys his sweatbands in bulk only at 3:13 PM on June 1