Restless legs & aching sides

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Kat1984
Kat1984 Member Posts: 47
edited July 2017 in Not Diagnosed With a Recurrence or Metastases but Concerned

over the past 2 weeks I've started getting incredibly restless legs in the evening. I had the same thing during chemo 18 months ago. It's like a can't control my leg movements, they're are achy, twitch and move involentarily especially at bed time and I can't sleep because of it. Has anyone experienced anything similar? I've also had aching down both sides, from the back of my armpit down my torso and into my arms. I thought maybe I was coming down with something but it's been weeks now. I am terrified of a reccurence but do my best to think logically, not panic and wait before rushing off to the doctor. For the restless legs in particular does anyone have any tips for symptom relief or any knowledge about what can cause this? Thank you all

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited July 2017

    There are specific meds to address RLS (originally, when the syndrome was first identified, they used quinine derivatives). The specific mechanism is unknown.Anti-seizure meds (gabapentin, Lyrica) can help, as can benzodiazepines. See a neuro. Might also want to get a chem panel drawn to check your electrolytes. The upper body aching might be related, and perhaps even just positional. Were it unilateral (where you had 11 nodes out), I’d say it sounds like the beginning of lymphedema—if so, take care of it now & nip it in the bud.

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  • ktb
    ktb Member Posts: 1
    edited July 2017

    Have your iron tested. I had symptoms of restless legs (but also had the aching/tightness in my arms and torso) for years and couldn't figure out what to do. My doctors didn't have much advice either. It seemed to get worse after my bc diagnosis, mastectomy and reconstruction surgeries. Finally, one of my pre-op blood tests showed low hemoglobin and hematoctrit, so they did an iron panel. My ferritin was extremely low. I was borderline anemic. I also had other symptoms (dizziness, fatigue, sleep problems), which I never attributed to low iron. I think my iron level had been low for many years but after 3 surgeries, it finally showed up in my blood panel. I started taking an iron supplement, and after a week or 2, the restless achy legs/arms/torso feelings disappeared. I haven't felt it since, and it has been 8 months. I didn't have chemo or radiation, but I read those treatments can affect iron levels. The type of iron supplement that worked best for me was iron bisglycinate. Worked fast and didn't cause GI issues. It's really important to have your iron tested before taking supplements, though, because too much iron can be a problem, too. Good luck to you:)

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  • Lumpie
    Lumpie Member Posts: 1,650
    edited July 2017

    Ditto! I had very bad pain my legs and they were "restless" off and on for years but it was particularly bad after chemo. Needless to say, this was scary. My PCP, oncologist and surgeon all told me I was worrying about nothing. My labs were within normal limits (my ferritin was toward the lower end of normal). I mentioned to the neurologist I see for a sleep disorder that the pain was so bad that it frequently woke me from my sleep. She said that many people with ferritin levels below about 75 ng/mL frequently report leg pain or restless leg symptoms. She recommended an iron supplement (Vitron C is one that is frequently recommended. It has vitamin C which helps your body absorb the ferritin.) It worked like a charm! Such an easy fix for some thing that was causing me a lot of worry and pain. I am distressed that my other practitioners did not recommend this solution.

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