Uncontrollable foot and leg movements

Posted by claricems @claricems, Nov 29 9:09pm

My feet and legs are in constant motion while seated or laying down. It all stops when I close my eyes and while I’m asleep. All RLS drugs have done nothing for me. No relief or side effects. When I am standing still I wobble. I can walk 1.3 miles without a problem. I am 76 and female.

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It could be akathisia.
What meds are you on?

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Sounds familiar.
My neuropathy in my feet was so debilitating after the first infusion they my oncologist lowered the disagree of paclitaxel by 20%
I am definitely better but unstable, apt to lunch out of control, and feel as though I have no control from my knees downward almost as though the circuitry to the brain has been severed.

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Do you have Restless Leg Syndrome? I have neuropathy symptoms but two nerve conduction studies were negative. But I understand that I still may have small fiber neuropathy. My neurologist doesn't put much faith in the additional studies for SFN because if the results are positive or negative, the treatment is the same for the symptoms since there is not cure. Additional studies have ruled out any other physical issues that may contribute. So I am in the idiopathic category. I do have an evening drink with my husband and this has been our ritual for many years. I understand that alcohol is a known toxin and I just may be one of the more sensitive ones.
Of late I'm much more prone to leg and foot cramps at night where I often have to get up and walk and try not to howl. Both my neurologist and my PCP seem to suggest that I may have RLS because movement helps in that situation. I don't know what to think. I'd like to hear descriptions of RLS from people here who suffer. My 300mg. dose of Gabapentin before bed seems to help me to sleep most of the night on good nights. The Neurologist believes that Gabapentin is a "safe" drug and that I can certainly up the dose if I want. The fact is that I was on a course of 300mg 3x/day and I really thought that was overkill and I still do.
Right now I'm monitoring my situation. If I add an Ibuprofen to the regimen, it seems to help along with exercise, trying to reduce stress, sugar and alcohol. So far I am mobile at age 73 and feeling fortunate.

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I suspected Restless Leg Syndrome but it was during my chemo infusions that it really became apparent that this was definitely worth checking into. After it happened once and it was brought to the attention of the nurse who was taking care of my infusions, one of the drugs that was part of the chemo cocktail was thought to be the culprit. After adding that to my IV, she could literally watch the changes that were going on in my legs. The swelling, the constant necessary movement, and the need to get up and walk it off. She felt that it was RLS. The drug was an antihistamine, strangely enough was added to the chemo cocktail to help ease leg pain. After that, they gave me that particular drug orally, which helped. Since then, I have done some research into things that can cause excessive inflammation and what can help reduce it. Like you, Gabapentin helped initially but once I got up to 900 mg per day, I started getting very anxious, irritable, low attention span. I backed off, which allowed me to get some of the exercise my neurologist recommended. I have been off all medication for several years and although I do have to pace myself with more strenuous activities, I am still able to do low impact exercises that help keep my muscles strong enough to get around. Using nutrition to help control things like Restless Leg Syndrome and severe arthritis pain has been helpful. I am always learning more things I can do. Turmeric is an excellent spice for eliminating inflammation, along with some teas. Cinnamon also helps. I only have an occasional glass of wine but whenever I do have a glass, the time of day is critical. If I have a glass in the evening, I notice that I will not be able to sleep as well that night and my legs will be more apt to have the need to get up and walk. Another thing I eliminated was caffeine with tremendous results. I have never been a coffee drinker and for tea, only decaffeinated. Coke, Pepsi, Mountain Dew all have a lot of caffeine. I can drink a caffeinated beverage once in a while without any side effects, but I really need to watch what, when and how much. I am a 6 year cancer survivor, I have spinal stenosis and severe arthritis. I will be turning 75 in a few months and have been pushing myself as much as I can to remain active. I have some beautiful flowers around the house that I am able to work with every day from spring through the fall along with getting on a lawn tractor to mow the lawn. Living in the country, there is a lot of physical work that needs to be done. I have no problem calling someone to help if there is something I am not physically able to handle on my own or with the help of my husband. My neurologist suggested three things that I can try to help me remain active. Swimming, but I don't have access to a pool, yoga or Tai Chi, something else that is limited in this area, and low impact exercise. My husband also needs to walk. We bought a treadmill, nothing fancy, and my doctor also suggested a recumbent. I have both that I try to use every day, but every other day is closer to what I am able to find the time to do. I would rather do something like this along with making good nutrition choices than having to rely on drugs to help keep me mobile and with manageable pain levels. I am often pretty sore by evening but after getting some rest, I am good to go again the next morning. Before trying anything new, always talk with your doctor. They will know your whole medical history and can guide you to make choices that are right for you. You will know what is best for you.

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Profile picture for pah17 @pah17

Do you have Restless Leg Syndrome? I have neuropathy symptoms but two nerve conduction studies were negative. But I understand that I still may have small fiber neuropathy. My neurologist doesn't put much faith in the additional studies for SFN because if the results are positive or negative, the treatment is the same for the symptoms since there is not cure. Additional studies have ruled out any other physical issues that may contribute. So I am in the idiopathic category. I do have an evening drink with my husband and this has been our ritual for many years. I understand that alcohol is a known toxin and I just may be one of the more sensitive ones.
Of late I'm much more prone to leg and foot cramps at night where I often have to get up and walk and try not to howl. Both my neurologist and my PCP seem to suggest that I may have RLS because movement helps in that situation. I don't know what to think. I'd like to hear descriptions of RLS from people here who suffer. My 300mg. dose of Gabapentin before bed seems to help me to sleep most of the night on good nights. The Neurologist believes that Gabapentin is a "safe" drug and that I can certainly up the dose if I want. The fact is that I was on a course of 300mg 3x/day and I really thought that was overkill and I still do.
Right now I'm monitoring my situation. If I add an Ibuprofen to the regimen, it seems to help along with exercise, trying to reduce stress, sugar and alcohol. So far I am mobile at age 73 and feeling fortunate.

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@pah17 I don’t know what I have. My legs do not move at night or “when my eyes are closed “. When I am awake and sitting they are constantly moving. My balance has decreased when I start moving but after I start moving I am fine. None of the RLS drugs have changed anything. I have just been prescribed Lyrica. Low dose to start and increase it weekly.

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