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    Painful legs moving toes syndrome
    ucrazd posted:
    I was wondering if anyone has heard of this condition. My leg collapsed from under me and twisted my ankle and injured my toes. It has been a very painful 4 years with multiple visits to neurologists, podiatrists, knee surgery, cortisone shots, MRI's, nerve conduction test...the complete gauntlet and finally someone came up with a name for what seems to be ailing me. There is not much information to be found on this subject and what little I did find requires a purchase in order to view the white paper or findings. From what I understand it is now all about pain management and increasing current medication (lyrica). Any comments or suggestion where further information may be obtained would be greatly appreciated.
    Lifes responded:
    "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 ... or at a website called We Move (google for it). I wrote once to the head of 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 ( )

    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.

    ucrazd responded:
    In answer to your questions...nothing helps. The pain is constant and oftentimes radiates up into my hip and side. If it weren't for the drugs I wouldn't sleep at night. I find walking makes it worse and depending on the type of shoes worn, even more painful. And since I sit behind a desk all day, it seems to aggravate it more.

    What I do know is this, over the past four years I have learned to live with the pain but it is taking it's toll on me. I am in the process of working with a pain management center in hopes that it will provide me the ability to manage the pain better. I have even consider alternative treatment like acupuncture...anyone tried that?

    And you are absolutely right....unless you experience this type of pain no one truly comprehends what we go through even family members. Since the injury has healed and there is no longer any physical evidence it becomes difficult for them to identify with the pain. That is the best way I can state it.

    I appreciate you sending me the information and I will check it out.
    lfgardener responded:

    I also suffer from this particular and rare syndrome. I got it after bunion surgery in March 1996, and have been suffering with it since then. I am responding to you because I remember how I felt in the beginning, and the terrible pain, anger and fear I experienced. I tried everything in the book, including a pharmacy full of drugs. I have an excellent neurologist who worked with me to manage this disorder.

    I now take seven different drugs, including opiates, which allow me to have a life. I don't have the life I used to have, but I am not an invalid, and I'm able to take care of my grandchildren, and to garden. Oddly, I went from being a scientist to being an artist as a result of this condition. I found that concentrating on creating an art work kept my mind busy, and eased the pain.

    I would be happy to talk to you about this miserable condition, if you would like. Let me know if you are interested, and we'll figure out a private way to talk.

    You have my sympathy, and more my complete understanding. My MD estimates that there are only 400-600 cases of this syndrome in the US. Aren't we lucky?
    lyndie19 responded:
    Hi! I have recently been diagnosed with PLMT (painful legs moving toes syndrome). Six months after surgery to my right great toe (an arthrodesis or bone fusion of the joint at the base of the toe) is when my symptoms began. A guidewire broke off during the procedure and poked through the bone so the surgeon had to retrieve it and went through the bottom of my toe and I think that is what has trigger my problem. My little toe on that foot is never still except when I am sleeping. This causes my whole right leg to ache. I am on the maximum dose of gabapentin for now, but it has not stopped the toe. My pain is a little better. I have been trying to research this syndrome also. Not a lot out there on it. Try going into a search engine and just typing in "Painful Leg Moving Toe Syndrome." There is a little out there.
    stephen130 replied to lyndie19's response:
    I have had PLMT for many years and find it very distressing. I don't feel well enough to work any more. Another problem is having my condition acknowledged by the medical profession. They help me, yes, but I don't fall into ny catchment area. I am not considered disabled and at the same I am in many senses quite restricted, or very restricted by this condition. I want to start an online help/chat group for fellow sufferers. Perhaps a website.
    I can be reached on MSN [email protected]
    An_221493 replied to lyndie19's response:
    I feel very sorry for you and all of us that have PLMT (painful legs moving toes syndrome. The name makes this terrible affliction sound like nothing to complain about. I have had this for almost 14 years now. At the same time approximately I got restless legs syndrome and periferal neuropathy. I also have sleep apnea so I run the gamut of everything that causes sleep loss.

    I have a wonderful neurologist who also teaches at the Univ. of California Davis Medical School in Sacramento, CA. Last Friday he filmed my toes (for the second time) for the benefit of his students since this is a very rare condition.

    Gabapentin did not work for me for the restles legs and the PLMT but it did help for my neuropathy. However, I was too groggy in the morning so I discontinued useage. I go back and forth but this is the typical meds I take for all of the movement disorders:

    Mirapex EX in the PM, Sinemet 1/2 pill 3 times/day, and Vicodin as needed. Usually I start out with 1/2 and add the other 1/2 if needed, but I usually do need it. The Vicodin stops the movement of my RLS and PLMT but I am worried to increase it any more because it can be addicting and I don't want to add that problem on top of all of the rest.

    I asked my Neurologist why there was no more research being done on it and it is for the obvious reasons that there aren't enough of us to warrant the $$ for the research. That is a real pity.

    Good luck on your quest.
    metro57 replied to ucrazd's response:
    I think I have this condition, I have high arches and have seismoiditis. About 7 months ago I developed severe pain in my left foot. I went through physical therapy for about 3 months without much success. About 3 months ago I notice my toes moving without me moving them. At first it was just slight twitches in one foot and it was usually when I would put my feet up and ice them. It is now in both feet and I notice it throughout the day. I feel a squeezing sensation in my foot before they start moving. The pain in my left foot is kinda a soreness on the top of my foot radiating to my ankle. I started to go to the acupuncturist and would highly recommend going. My acupuncturist practices five elements. In one session my pain level was at a five and she got me down to a one. She did this by putting needles in my right hand. It didn't last long but at least I got some relief. I'd say my pain level recently has been at about a two to three but it is pretty constant. I've had nerve conduction tests that suggest Tarsel tunnel. I'm also having constant tingling in my lower extremities and when I rest I have tingling throughout most of my body. My neurologist thinks it is caused by my anxiety and diagnosed me with hyperventilation syndrome, but when I asked about the pain in my foot and my moving toes. He asked me to bring a video. He also doesn't think my nerve conduction test is accurate. Very frustrating, maybe when I see him again in 4 weeks he'll believe me when he sees them moving. Now its happening more frequently I'll probrally just have him watch.

    How did yours progress, and how were you diagnosed?
    Neuro01 responded:
    Hello, I'm a neurologist and recently met a patient with this condition who noticed that when she holds her breath, the involuntary movements of her toes disappear. I would be grateful if anyone with the condition reading this, would try breath holding to see if the same thing happens. It may simply be an idiosyncratic feature in my pt's case but it would be very interesting to know if other people experience this. Thanks very much!
    DarkAngelYuuki replied to Neuro01's response:
    have this syndrome for almost 4 years now and it's frustrating a lot tried holding my breath but it doesn't seem to have any effect. i'm really glad that there is a neurologist that tries to research this case because it really hurts a lot and i feel used in the hospitals i have been. am only sixteen now and i read that it's really rare by young people if you find any other things would you please let me know?

    Thank you
    DarkAngelYuuki replied to Neuro01's response:
    hey, i have been suffering from this rare syndrome for almost 4 years. tried holding my breath, but it doesn't seem to have any effect. I'm really glad that there is a neurologist that research this case. i'm only 16 and i read that this syndrome is very rare at a young age and it really hurts a lot to. They tried a lot at the hospitals, but nothing seemed to work and it's really frustrating

    So if you find anything, will you please let me know?

    thank you
    Neuro01 replied to DarkAngelYuuki's response:
    No problem. And thanks for getting back to me. So the movements don't stop at all, even for a few seconds while you hold your breath? In the pt I've seen, it didn't stop the pain, just the movements temporarily. Sorry you're not doing well.
    ssarizzo replied to DarkAngelYuuki's response:
    I too was diagnosed with this condition last summer. I was struggling with low back pain for nearly 7 years but something changed over the summer of 2011. My toes started to move involuntarily and I had terrible pain in my legs and right foot. My toes moved in a fanning motion and I had difficulty making them stop. I had to go to the emergency room on three occassions over the summer because my leg and toes would "lock up" and the pain was terrible. Each time at the hospital, I was given a shot of diladin (for pain) and one valuim (to relax the muscles).

    I was seen by a neurologist who diagnosed me with the condition. He put me on clonidine 3 x per day and gabapentin for nerve pain. He said the clonidine worked on the same neurotransmitters for movement. I did not notice any change and the symptoms continued. I did 16 weeks of physical therapy at a place that specialized in back and necks. Again, no change and I had several MRIs. Nothing really was revealed by those MRIs. I also had a few injections in my back with no change. Clonidine, Lyrica, and gabapentin did nothing and I am off al three.

    I was then referred to a pain clinic of a major hospital in the area. The pain clinic collected all of my information from each place I received services in the past. They staffed my case and had an idea what was going on even before meeting me. When the doctor walked into room, she was confident she had an answer to my condition. She ordered an MRI; however, not on my back but my hip. As she suspected, the MRI revealed sacroiliitis, pyrformis syndrome, acetublar labral tear, and a bone spur on my hip (which caused cartilege erosion).

    Since the treatment focus has been on my hip, sacroiliitis, and pirformis syndrome, I no longer have any symptoms of painful legs and moving toes syndrome. The doctor suspected that when the sacroiliitis (arthritis) became inflamed, the muscle group (piriformis syndrome) would then be stressed and begin to spasm. Once that muscle group spasmed, it pinches the sciatica nerves and causes leg pain and moves the toes. I am going to have surgery next week to repair my hip but the surgeon said that the sacroiliitis and pirformis syndrome will not "cured" by the surgery. The surgeon believes that once my hip is fixed, my gait and walk will be normal, which should reduce inflamation in my back.

    I am taking meloxicam 1x day for inflammation
    Morphine sulfate 30mg 3x per day
    Oxycodone 500mg as needed

    I hope this helps everyone with this rare condition.
    ssarizzo replied to ssarizzo's response:
    Forgot to mention that I had four injections in the pirformis and sacroiliitis, which has helped a lot!
    metro57 replied to Neuro01's response:
    Hi, thank you for your reply. I tried holding my breath but no luck. I'm a little discouraged because it doesn't sound like much can be done for this. the only thjng that seems to help me is accupuncture. it helps with managing the pain, but my toes still move and cramp up. its really freaky. i gave up on the neurologist i was seeing, im thinking of starting again to see a movement disorder dr.

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