"Painful legs moving toes syndrome" OR "Syndrome of Painful legs moving toes" -- You know, at first I was going to reply that some docs were just pulling your leg or toes (no pun intended)-- I'd never heard of such a diagnosis. BUT, it's really the name docs call it. Learn something new everyday.
I found a few free journal articles (which you've likely seen too). The syndrome sounds like a combination of a movement disorder AND neuropathic disorder (neuropathy). Neuropathy can occur after ANY injury, even minor ones.
You MIGHT find more info at www.neuropathy.org ... or at a website called We Move (google for it). I wrote once to the head of neuropathy.org and the man was very helpful and gave me phone numbers of regular people I could call for support.
One journal article is (pdf)
The Syndrome of Painful Legs and Moving Toes - A Case Report
A K Y Tan and C B Tan
at
( smj.sma.org.sg/3704/3704cr4.pdf )
baclofen 10 mg tid and clonazepam 2 mg tid
"It has been postulated thatephaptic excitation in damaged peripheral nerves may causeabnormal impulse transmission in peripheral sympathetic andsensory nerves, leading to reorganisation of the central processingof sensory information. This reorganisation leads to pain overwide areas in a non-dermatomal distribution'8' "
You can ask any public library to make inter-library loans to get copies of ANY medical journal articles-- charge: the cost for the copies. You might research in the Journal of Family Practice because it uses less medico-jargon, versus neuro journals which could be quite heavy on jargon.
I'd ask about those 2 meds -- baclofen 10 mg tid and clonazepam 2 mg tid . Baclofen is used for dystonias .
On the practical side, with my tremors/neuropathy, my legs feel better when tightly swaddled - like swaddling a baby. Does it help you more when your feet are free or when encased, like in socks or shoes? Does weight-bearing help more than no pressure on the feet? Does it go away more during sleep-- and get worse during voluntary movement (like walking)? These are the things I focus on -- and try then to find the best things that help ME.
Docs really don't understand neuropathy. Few of them FEEL it, and (I think) they think we exaggerate the severe pain. You may not get much practical tips from Drs. I can tell you, narcotics or over the counter pain meds do NOT help neuropathy or movement disorder pain. Lyrica, Trileptal, Neurontin are better meds for neuropathy pain. Lidocaine topical cream also helps.
I really feel for you. My muscles jump and I know that's aggravating. I cannot imagine the irritation from having toes jerking around ! and yes, the leg muscles can get sooo sore and achy because the nerves are always firing. I hope you'll find the right combo of meds to help the pain.
Lifes