Med mystery #436: what does the following pattern of symptoms suggest?
April 23, 2013 1:32 AM   Subscribe

What started as an overuse injury has bloomed into a shape-shifting pain octopus, over two and a bit years. I’m not sure which pains mean what, or what to emphasize with my rheumatologist. (Maybe this is about me and maybe it isn’t, but I’ll say it’s me for the purposes of this hypothetical question, and nobody’s my doctor, either.)

“I” have a combination of things going on that is confusing everyone “I”’ve seen, which includes “my” GP, three sports med docs, a chiropod, and an ortho. Am booked to see a rheumatologist.

Current diagnosis: peroneal tendonitis, left foot/ankle. This is suspect because 1) it doesn’t quite fit. Most everyone agrees on that, but they’ve thrown their hands up and settled on this and 2) according to literature I’ve read, which it seems my providers haven’t, at this point it really should be tendinosis. Which, if true, would mean that NSAIDS are not only useless but bad for it, and also, only a few very specific physical therapies might help. I am having trouble accessing PTs who know how to provide them.

Onset: it started over 2 years ago when I, a sedentary, overweight person at the time, got into running. They were little electric twinges down the side of my left ankle that initially were only present while I was actually running, or when going down stairs. Better with rest, but only some positions – letting it lean even a bit to the left or right hurt.

At the time, looking at diagrams I thought the main pain felt like it could be where the navicular bone is. X-rays and a bone scan did not show fracture, but did show arthritis in the big toe, which didn’t bother me then (but does now).

Later, pains got worse, and appeared during & after regular activity and with rest, but were intermittent, and appeared to move across the ankle and top of foot. Across the top of the foot, there was more tingling and a kind of itching. No swelling, no bruising, ever. I could not put weight on my foot, especially after any kind of activity – swimming, cycling, anything – which made it throb like hell and made me limp for at least a couple of hours, if not days.

An MRI showed nothing, but I couldn’t actually walk, so I did a month on crutches. Things kind of improved with this, so I felt it was ok to do non-impact activity, which brought everything back.

Today: most of the time I’m not in a kind of sore, throbbing pain. It feels like the foot and ankle, up to mid-shin on the left side, are full of a kind of pressure. Like it will burst if I don’t shift after a few minutes, whether feet are flat on the floor, or elevated (the full feeling is especially with elevation). I can’t walk for more than ten minutes without limping; it hurts a lot to put weight on it at those times. It generally feels unstable. There are sharper pains that basically follow the extensor digitorum longus tendon. (I googled the anatomy and freaked out to see my pain pretty much mapped.) Occasionally there’s tingling or burning running from the ankle across the top of my foot to my toes, as if along the ends of that tendon.

I had some kind of electric conduction test, which came out ‘no probs’.

More recently I started having pain along the inner ankle. It basically feels like my foot is structurally failing, I don’t know how else to put it.

But then sometimes, if I really really stay off it, I can walk ok for a bit longer. Sometimes, my appointments fall within this window, and I forget details, even though I walk in with things written down.

Other: I’ve had plantar fasciitis as a result of previous running attempts, twice.
I’m hypermobile in my hips and shoulders (not fingers). Was recently found to have HLA-B27 and moderately out of range (high) ESR. No Rh factor. Some kind of feeling in the lower back – not pain, more a kind of tingly ‘awareness’. Morning stiffness for about an hour, both feet. Oh yeah, also in both ankles: was found to have limited range of motion.

Also, last year I had a weird week where I couldn’t use my hands to open jars, but that hasn’t happened since.

Maybe there’s an inflammatory thing happening, don’t know, but the foot issue definitely has its own thing going on and it's driving me nuts. I try to work out - weights, & weight machines for lower body, since I can't squat or deadlift anymore. (Instead I do ham curl, which still stresses out my foot, and modified cable extensions.) No cardio ever. Otherwise, I hardly do anything any more, and stay off my feet as much as poss.

I have been looking at everything from stress fractures to exertional compartment syndrome, which scares the crap out of me.

Also: it annoys me that doctors don’t review the actual scans again, they just read each other’s reports. I’m not sure the various scans necessarily caught everything – have read that different intensities or angles might miss things. (Even with x-rays: weight-bearing vs. non makes a difference, I know.) Apparently a diagnostic ultrasound, done by the right hands, can catch soft tissue things brilliantly with no ill effects. I wonder why this isn’t done more often.

What does this sound like? Or even, how can I describe it better to any med person I see?
posted by nelljie to Health & Fitness (7 answers total) 3 users marked this as a favorite
Sorry, should be "most of the time I'm IN a kind of sore, throbbing pain." And by "really really stay off it", I mean completely off it, which buys me maybe 20-30 minutes of pain-free walking time.
posted by nelljie at 1:52 AM on April 23, 2013

IANAD. I had an overuse injury in my left foot a few years ago, also from running. The pain and swelling were along the whole outside of the foot and up into the front of my ankle. It was diagnosed as tendonitis. It took a LONG time to heal. I was in a soft cast and in a walking boot for 8 weeks. That was coupled with cortisone injections into my knee every 2 weeks or so. Then I wore a brace for another 8 weeks or so. Basically 4 months of walking support. Once you start messing with your gait to ameliorate pain, you risk getting everything else out of alignment. Maybe a month on crutches was just not enough time to heal. Tendonitis hurts and does take a very long time to heal. I would ask about getting you some kind of walking boot or orthodics, or something to stabilize the area. The cortisone injections did really seem to alleviate the pain and inflammation I had going on.

I got this care at a Foot and Ankle specialist. Maybe that might be an option for you. Good luck.
posted by Katine at 6:48 AM on April 23, 2013 [1 favorite]

The foot symptoms you describe sound like you're developing or have developed some nerve issues in the area- it could be as simple as the nerves being "caught" (an impingement or entrapment), or there could be inflammation irritating the nerves, which sounds plausible. I'd suggest a cool foot soak for the affected foot which also covers the ankle as well. About ten minutes in water that's cool or cold but not freezing- don't give yourself frostbite. Then put the foot up for as long as you can afterwards.

I have no idea about the other stuff.

IANAD, consult with a doctor before implimenting this advice.
posted by windykites at 7:00 AM on April 23, 2013 [1 favorite]

Other things to look at include fascial retraction along the tendon or nerves in that area; most doctors don't address the fascia. You might consider rolfing to address this, or classical osteopathy (not the american kind) to address issues with your organs, hips and vascular system which could lead to this kind of thing. Message me if you want more info.
posted by andreapandrea at 9:11 AM on April 23, 2013 [1 favorite]

If the problem is stemming from soft tissue inflammation, you may want to give voodoo flossing a try - we have no concrete scientific understanding yet of why it works (so it's unlikely you'll get it from many PTs yet), but in a great many cases, it's miraculously palliative, especially for chronic tendon/ligament inflammations caused by sluggish local circulation. I wouldn't expect an outright cure, but you could try it for what it's worth.

Kelly Starrett uses it regularly to treat all sorts of joint impingements : Elbow epicondylitis case, Shoulder int. rotation case
posted by Kandarp Von Bontee at 10:48 AM on April 23, 2013 [1 favorite]

Thank you for your responses! I'll look into those suggestions, for sure. Kandarp - your mentioning circulation feels kind of right; I'm not sure how it's related (other than as you say a lack of circulation to 'junky' tissue, heh), but definitely elevating the foot hurts, and so does keeping it flat, after a certain amount of time. Almost feels like things are pooling in there :(
posted by nelljie at 9:46 PM on April 23, 2013

I’m hypermobile in my hips and shoulders (not fingers). Was recently found to have HLA-B27 and moderately out of range (high) ESR. No Rh factor. Some kind of feeling in the lower back – not pain, more a kind of tingly ‘awareness’. Morning stiffness for about an hour, both feet. Oh yeah, also in both ankles: was found to have limited range of motion.

Also, last year I had a weird week where I couldn’t use my hands to open jars, but that hasn’t happened since.

I think hypermobility can engender inflammation as a way of coping with the hypermobility, because inflammation can lay down new collagen, or stiffen and contract the old collagen, or both (see this question from a few days ago).

But the problem seems to be that this inflammation can go too far and even develop into a full-fledged autoimmune disease, so given your HLA-b27 status, it's good you're heading to the rheumatologist.
posted by jamjam at 2:42 PM on April 24, 2013 [1 favorite]

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