Living with Sudeck's syndrome

Is anyone else still hanging in there?
I’d love to hear what you guys have been going through...

Well, (sadly) we’re still hanging around.
I don't want to dive into the weeds just yet until I see if infinite (or maybe someone else) is still lurking on this forum, but once that's settled, we can get back to chatting about this "cheerful" topic.

Hi there, I’m checking in too.
I hope things are starting to look up on your end 🙂

Please, let me know how you're doing.

So, my mother-in-law—she’s 48—is dealing with Sudeckov. It all started about a year ago when she sprained her ankle and some medic botched the cast application. Ever since, it’s been a nightmare. She’s done the whole circuit: physical therapy, EMG tests, even heart catheterization after two heart attacks. They put in two stents at the bifurcation; one failed and the other is barely hitting 70% capacity. We've done MRIs and everything else you can think of, but nothing works. Her leg is still swollen and painful, the skin color is totally off, and the swelling is creeping up toward her knee. Since the doctors basically hit a wall, she tried various alternative medicine remedies, but honestly, it hasn't moved the needle an inch.
I'm putting this out there to see if anyone here has dealt with this specific condition. Any advice on what we should do next? What's the move? 😕

What’s the best way to handle Sudeck syndrome?

I was diagnosed with Sudeck after suffering a humerus fracture that required surgery, all under the care of the physical therapist I was seeing for rehab. Once they identified the issue, my treatment plan was overhauled to include specific pain management and mild sedatives, which made a world of difference...
After doing some digging online, I realized that combining targeted physical therapy with medication is indeed the standard approach for this condition.
I have Type 1, which manifested as these agonizing, unrelenting pains shooting through my entire upper arm every single time I tried to move...
Fortunately, once we pivoted the therapy toward highly customized, dosed exercises and electrotherapy, my condition improved significantly.
I suppose I was just lucky that my therapist had enough experience treating Sudeck patients to catch it in its early stages before things spiraled further...

Hi everyone,

I’m at my wits' end trying to figure out where to turn, so I thought I’d try my luck posting here.
My mother—she's 66—broke a metatarsal bone in her left foot about a month and a half ago (an avulsion fracture at the base of the fifth metatarsal). To start with, they just kept passing her around from one specialist to another, insisting it wasn't an emergency and telling us to wait three weeks for an appointment; long story short, she’s spent the last six weeks wrapped in bandages and using ice packs, and we only just got her crutches two weeks ago to help her get around. We had a follow-up, and the good news is that it's healing fine—no displacement or anything.

But here's the real issue: her foot—specifically around the break, the toes, and the ankle—just keeps swelling up constantly (for instance, if she sits at the table for just 15 minutes to eat, the whole thing puffs up), and the color changes—it turns red, then goes bluish—and it’s incredibly painful to the touch. We saw a second orthopedist after the first one basically shrugged his shoulders and said, "Well, it's broken, what did you expect?" when we asked why it was acting this way. This new doctor, however, says the swelling shouldn't be happening anymore; his diagnosis is "Suspected Sudeck syndrome, left foot," and he referred us to a physiatrist.
So we go there, only to be told to wait another three weeks—which is a nightmare because with Sudeck, you really need to act fast. We finally managed to squeeze in as an "urgent" case, and the physiatrist suggested using Lioton straight from the freezer to apply to the area (though applying it hurts like hell!), along with some range-of-motion exercises. Despite all that, the swelling persists, and the cream (which feels more like something for varicose veins!?) isn't doing a thing. When we called them this morning, they just brushed us off, saying, "Well, she needs to work on her mobility, and you should keep using the compresses"—which she hadn't even mentioned before, and our orthopedist specifically said compresses won't help with this—and then added that for the Sudeck issue, we need to go back to the orthopedist.
Where do we go from here? Honestly, I can't tell who's incompetent: either this specialist doesn't understand what Sudeck syndrome is or how to manage it, or the orthopedist doesn't realize that *he* should be the one handling it (which seems less likely). I'm totally lost on where to go or who to trust, especially since everything is happening here in Pittsburgh.

Thanks so much for any advice!

Nega should have been put in a cast.
I dealt with the exact same kind of fracture myself. I was stuck in a cast for six weeks, and once that finally came off, I wasn't allowed to put any weight on my leg for another four weeks—I had to rely on crutches.
On top of that, you have to do physical therapy. It’s a long road; it took me seven months before I could finally stand comfortably, like when stepping off a bus or something, without feeling that pain.

Patrick Young2, thanks so much for getting back to me!

I wanted to ask—after an injury like that, did your foot end up looking wider than before?
My mom is about two months out from her fracture, and her foot is actually a full size wider than the other one—it’s just so swollen—plus everything feels completely stiff. Her toes are still puffed up, she can't really move them, and she’s having a hard time rotating her ankle at all.

Thanks again!

Hey everyone,

Three years ago, I had a sesamoid bone removed from my foot. Ever since then, it’s been nothing but chronic pain—this constant tingling and burning sensation. My whole foot hurts when touched, especially near the top of my big toe. Even though they actually cut a nerve during the procedure, the pain is still there. I’ve gone under the knife five times now. Three of those surgeries were with Dr. Nemec, but nothing has worked. I've been passed around with all sorts of diagnoses like Sudeck syndrome or phantom limb pain, but none of them seem to hit the mark. It hurts like hell if anything touches it, yet I have zero surface sensation in one specific area of my foot. If anyone here is dealing with something similar, please reach out. I'd love to chat and see how you're managing it. My main issues are the stinging, the burning, and the tenderness, and honestly, it hasn't let up for three years straight.🙂

jadegull13 said:hey everyone

About three years ago, I had a sesamoid bone removed from my foot. Ever since then, it’s been this constant, chronic pain—stinging, burning, and just hurting like hell whenever anything touches it. It burns the most right near the top of my big toe. Even though they actually cut a nerve during the procedure, it still hurts just as much. I've gone through five different surgeries now. Three of them were with Dr. Nemec, but honestly, nothing worked. I keep getting bounced around with all sorts of diagnoses, but none of them seem to hit the mark—Sudecko syndrome, phantom pain, you name it. The thing is, it hurts incredibly much when touched, yet I have absolutely zero surface sensation in one specific spot on my foot. If anyone out there is dealing with something similar, please reach out; I'd love to chat and see if we can make sense of this together. My main issues are the stinging, the burning, and the sensitivity to touch, and man, it just hasn't let up for three years straight.🙂

You really need to go see a neurologist or an anesthesiologist who specializes specifically in pain management.
Since you've been dealing with this for three years already, it's pretty unlikely you'll get relief without some serious, long-term pharmacological intervention—we're talking things like anticonvulsants or maybe tricyclic antidepressants...
The catch, given how long this has been dragging on, is that the meds aren't going to work overnight. In plain English: you're going to need a massive amount of patience and persistence. You'll likely have to tweak and adjust your prescription multiple times before finding the sweet spot.🤷
Once you finally hit a period of remission—you know, when the pain starts to dial back—I'd suggest looking into a psychologist or therapist who specializes in pain management techniques. They can help you learn how to mentally "unhook" from that pain loop.

velvetmoose9 said:Find a neurologist or an anesthesiologist who actually specializes in pain management.
Since you've been dealing with this for three years now, don't expect a quick fix. You're likely looking at long-term, aggressive medication—maybe some anticonvulsants or tricyclic antidepressants...
The catch (given how long this has dragged on), is that nothing works overnight. You have to be patient, stay persistent, and be prepared to tweak and adjust your meds multiple times. 🤷
Once you hit remission—meaning the pain starts to dial back—try seeing a psychologist or therapist who specifically deals with chronic pain management.

I’m already seeing different neurologists. Right now I'm in Pittsburgh seeing Dr. Marović; he put me on Tegretol 200 mg and Lyrica 75. My resting pain has dropped about 10-15%, but any touch still feels unbearable. The issue is that nobody seems to want to take my case seriously, except for the staff over at Nemec Hospital, whom I'm in constant contact with. Just as a side note, I actually have a degree in kinesiology, which makes this even harder—it kills me that I can't do anything, can't rush, let alone run. It seems like you all know your stuff. Are you a doctor? Any advice or help would be appreciated...

thanks a lot for the reply 🙂

Unfortunately, there are more of us out here :-(

What kind of treatments or meds would you guys suggest? And does anyone have a recommendation for a doctor who actually understands this stuff and knows how to help a patient deal with it?

I'm really hoping someone keeps an eye on this thread, because honestly, most of the posts around here aren't even relevant anymore.

Ugh, I’m dealing with the exact same thing. I actually went in for physical therapy and they tried everything—TENS units, magnetic therapy, you name it—but honestly? It hasn’t done squat.
The pain just keeps ramping up every single day. Now my doctor is throwing around the idea of a sympathetic nerve block, so I’m wondering if anyone here has actually gone through that? Has it helped anyone?

Could you let me know which doctor you're referring to? I'm looking for some guidance on setting up an individual exercise routine—thanks so much!