Restless leg syndrome

Discussion in 'Fibromyalgia Main Forum' started by lillieblake, Jun 1, 2008.

  1. lillieblake

    lillieblake New Member

    I shake my legs constantly, 24/7. My neurologist told me it is anxiety and not something he is concerned about, considering my other problems.

    Anyone else have RLS?

  2. SweetT

    SweetT New Member

    When I had my follow-up appointment to my sleep study, I was diagnosed with it.
  3. annade

    annade New Member


    I was Dx'd with RLS last year and my nuerologist gave me a prescription for some med. I cannot remember the name and it didn't help. What did help was taking a magnesium supplement called Natural Calm by Natural Vitality. It is a powder form of magnesium citrate. I would dissolve a tsp in warm water and drink it before bed and sure enough the RLS diminished and then stopped after a month of the supplement. I actually don't take it regularly now, only if I feel the RLS comeing back on. Hope this info. helps.

  4. gapsych

    gapsych New Member

    Yes, shaking your legs constantly MAY be a sign of RLS.

    Do you get the same feeling that you do at night?

    Basically, the brain is sending the messages to move your legs when you are sleeping or lying down to decrease the pain. This can also happen in the daytime, except you are not necessarily aware of the pain. However, your brain recognizes this just like when the pain is more apparent at night. This is a very simplified versions.

    However, there are lots of other reasons for this.

    Do you have a diagnosis of RLS since you are seeing a neurologist?

    I have RLS and before I took medication, I would constantly shake my feet while sitting. This decreased after getting on the correct meds. However, every once in a while, I will notice I am doing this.

    You might want to search the internet as I know that there are people who get the same pain during the day as at night.

    Do you pace around during the day. This can also mean that the RLS is bothering you during the day.

    But please remember this is only one reason that you may be shaking your legs.

    Good luck,

    You could ask your doctor about the magnesium and also have your iron levels checked. I responded to iron therapy as I was very anemic but unfortunately not the magnesium as my RLS is pretty extreme.[This Message was Edited on 06/02/2008]
  5. exhaustedelegy

    exhaustedelegy New Member

    I've had RLS since I was a child. Then it was mostly on long car trips...or when I was trying to sleep and it was very hot.
    It wasn't until I had spine surgery in my 30's that I knew it was called RLS as my ortho doc gave me meds for what I had described as "happy legs" (always wanting to dance at night.)
    It's gotten worse as I've aged. I take "Requip" 1mg. at night. (Now generic "ripinerole")
    First and foremost...there could be other causes to this that should be eliminated. NEXT,if it is RLS you should make certain you aren't anemic. My RLS increases a ton when I'm anemic.

    ~Exhausted Elegy
  6. frosty77

    frosty77 New Member

    I've also had this all my life. Too bad this leg movement does not count as exercise - I'd be in great shape! I've never taken anything for it though as I figure it's just a minor inconvenience.
  7. puffant

    puffant New Member

    My RLS got so bad my hubby started to sleep on the couch. My dr gave me requip and it worked for a while, like most drugs do for me. I have been going to a chiropractor since Dec of last year and after a month of going to her my legs don't bother me as much. Sure wish my other symptoms would go away as easy. lol
  8. Clay2

    Clay2 New Member

    I guess if you have RLS, I'd really question a doctor who called it anxiety.

    Many are helped by magnesium supplements, and my doctor just suggested it could also be low iron. If getting your electrolytes and minerals into line doesn't work, then there are prescriptions.
  9. AK_Rose

    AK_Rose New Member

    Have had RLS all of my life, worsened when I was pregnant, and then never went away. Used to be off and on, started to notice it mostly before my time of the month. After giving birth and having another illness (chronic ulcerative colitis which ended in surgery) it has NEVER gone away. Right now it is making me want to scream (and I'm about a week away from my "time").

    I have it in my whole body and the neurologist started me on gabapentin, which just happens to be in trials for treating FMS. The gabapentin also helps with the chronic pain I have in my hip after being on steroids for ulcerative colitis. The RLS worsens my pain and vice versa. Heat helps me, or massage. I have one of those little hand massagers that I rub up and down my legs (since my husband can only massage so much, which is way less than he used to!). That usually helps a lot. The other meds I'm on for FMS help the pain and the RLS also.

    FMS was never an issue for me, that I knew of, until after the pain in my hip got so bad and I got pain all through my body after a few months and awoke feeling like I had the flu or had been hit by a truck. Went to rheumatologist for hip pain and came out w/FMS diagnosis.

    RLS definitely isn't anxiety, but I would say it could be affected by anxiety, as our neural impulses are...

    Gotta get up and boogie my legs won't let me type anymore!

  10. Ruby1523

    Ruby1523 New Member

    Anxiety can make RLS worse but I think you need to see another doctor to figure out what is wrong. Some people do have anxiety and bounce/shake their legs. This is not necessarily RLS. True RLS usually happens when you are at rest. Getting up and walking will make it go away temporarily. The best site to get reliable information on RLS is (Hope it is allowed to give out this info on here). I have had RLS for years although it is under control for the most part right now. I would be glad to talk to you more about it.
  11. lca

    lca New Member

    Thank you Annade for the Natural Calm magnesium suggestion. I was lucky I read this post today as I just went to pick up my prescription for Mirapex and paid (GASP !) $40.00. I was on Requip for a few years, it quit working, so switched to the Mirapex. Also not working.

    I am desparate for something that will really work before I loose my mind. From what I read on the Natural Calm web site, this sounds like it might be good at helping a lot of other symptoms too.

    Can this be found in stores or purchased only online?

  12. annade

    annade New Member


    I believe I purchased the Natural Calm at Henry's Market (California), but also know it is available at Whole Foods and probably Jimbo's health food stores. Not sure where you live, but go to a health food store and ask if they carry it and if not if they can order it for you. If all else fails, order it on-line. Sure hope it helps you.

  13. lca

    lca New Member

    I was so excited after reading testimonials on the Natural Calm, ordered it right away online. With shipping it was about $23.00. We don't have any of the stores you mentioned here in Wisconsin, General Nutrition did not carry it either.

    If it works as well as people say, I'll be thrilled. A natural mineral you're body needs anyway makes more sense than Mirapex that's really meant to treat Parkinson's and is very expensive.

    I'll update how I do on this after a while.
  14. annade

    annade New Member


    Sure hope the Natural Calm works as well for you as it has for me. I saw results pretty quickly, hope you do as well.

    They say on the package to start with 1 tsp and see how you do before increasing. The reason for this, as I found out, is that it makes your stools soft and can cause diarrea if you use too much. Good luck and keep us posted.

  15. lillieblake

    lillieblake New Member

    Wow, thank you to everyone for the info and sharing. I take calcium with magnesium citrate and it doesn't help. If I can't shake my leg, I bounce it, but mostly I shake my left ankle and the pain is in my right leg (fms) and right knee (arthritis). But I do have the nicest looking ankles if I can compliment myself!

    Dr just gave me miraplex (haven't started it yet).

    If it works, I may miss the RLS - it has got to eat up some Calories!

    :) Lillie
  16. 2_TiReD

    2_TiReD New Member

    that RLS may be caused by the same neurochemicals as a whole body kind of way. I can describe my symptoms as the "butterflies in the stomach" feeling that I get when I have been startled or am overly excited, but the sensations aren't in my stomach, they are throughout the body; most often legs/arms. I have to move or the sensations become unbearable. Icky.

    I have tried mirapex, requip and sinemet and they all stopped working after a short period of usage (requip - 6 months, mirapex and sinemet - approx. 3 months). Xanax is helping at this point, along with my pain meds.

    I have noticed that certain things make it worse: drinking alcohol while on benadryl, for example, or running out of my pain medications. As long as I take my pain medications and stay away from alcohol, I seem to be okay. Also, gentle stretching and warm baths help a bit, if I remember correctly.

    RLS is horrible!!! People who have not experienced this "wonderful" (ha) disorder look at me as if I am nuts when I talk about it. I actually had a doctor tell me that "you can't have RLS because you feel it in your arms"...ummmm.....the chemicals that are in my legs are also in my arms.??

    Also, constant shaking of the legs could signal a circulation problem. I have EDS (Ehlers-Danlos syndrome) and if I sit still for longer than a minute, the urge to move becomes impossible to ignore (which is a sort of a different sensation than the RLS I feel at night/while at rest)and I start to shake/bounce my legs or feet. I was told it was because my body is unable to circulate blood efficiently, so once I stop moving, my body freaks out.

    Sorry for the long post, but I hope you find something that helps.

    For Bakeman: it sure sounds like RLS that you are describing! Have you tried requip or xanax? Requip was my first med that worked for RLS.

    Bye guys.

    [This Message was Edited on 06/22/2008]
  17. lca

    lca New Member

    I've been on the Natural Calm for about two weeks now. The RLS is really better most nights, but my stomach isn't too happy. I refuse to give up easily and will try to keep it up, hoping my system will eventually get used to the magnesium.
    Having Gastroparesis is no fun with added magnesium. I started with a scant teaspoon and have not increased the amount yet, not until my stomach calms down. Ugh, it's always something.
  18. Waynesrhythm

    Waynesrhythm Member

    Hi All,

    I just purchased a microcurrent device called the Alpha Stim 100 which I received in the mail yesterday. I've already done two sessions, and based on my initial reactions, expect to have a fair amount to report on it.

    I was browsing some Alpha Stim testimonials last night, and came across one which mentioned relief from RLS. I thought of the many people on this board who deal with it, and thought I would paste that particular testimonial below. From my initial very limited experience of what feels like a calming down of neural activity, I can quite easily understand how it could help those with RSL.

    The following information comes from an ImmuneSupport article entitled <a href="">Low-Level Brain Stimulation Repeatedly Proven Effective for Fibromyalgia</a>.

    ""More information about the technology, including abstracts of around 40 additional scientific studies and hundreds of testimonials can be found on the company's website: The Alpha-Stim SCS unit and supplies are available at""

    Regards, Wayne


    I have lived with diabetes for forty-four years, since the age of six. I have also been diagnosed with other autoimmune disorders such as Epstein-Barr/Chronic Fatigue Syndrome, Fibromyalgia, and Restless-Leg Syndrome. These syndromes have caused a multitude of symptoms such as insomnia, anxiety/depression, and a chronic overall sense of not feeling well.

    In April 2004, I underwent emergency surgery due to a spinal infection. While undergoing physical therapy after my surgery, my physical therapist suggested that I try the Alpha-Stim® SCS, because she believed it could help with some of the symptoms that were making my recovery from spine surgery more difficult; namely, insomnia, RLS, anxiety.

    She began treating me with the Alpha-Stim® for twenty minutes, two to three times a week I noticed a significant difference in my symptoms after only three or four uses. The most notable change was my ability to remain in deep sleep throughout the night. I began to notice how well rested I felt upon awakening. The disruption of sleep caused by Restless-Leg Syndrome also diminished.

    I also became aware that when I missed my physical therapy appointments and had not used the Alpha-Stim® for three or more days, my symptoms returned. I made the choice to purchase an Alpha-Stim® SCS for my own use at home. Many insurance companies will cover some of the cost, as mine did.

    I started by using it everyday, for one hour, the first two weeks, as recommended by the maker. After two weeks, I was able to reduce the number of days, as well as the length of time, to every other day for one-half hour, which is the schedule I am currently following. I continue to enjoy deep, restful sleep, with no annoying disruptions from RLS.

    Sleeping well at night allows me to feel well rested and more energetic upon awakening. My anxiety/depression levels have been greatly reduced, and I have an overall sense of wellness. I would highly recommend the Alpha-Stim®, for at-home use, to anyone who suffers from similar symptoms.
    [This Message was Edited on 07/24/2008]
  19. Rafiki

    Rafiki New Member

    First RLS

    Don't take Benadryl if you have RLS. I get full body RLS when I have taken more than my usual 1/2 dose of Benadryl. It is a known side effect, apparently. Normally, I don't have any kind of RLS. And, RLS can happen in any part of the body but is most common in the legs.


    The other night I had a dream that I was seeing my doctor - we'll call her Dr. Bell - and she had a list of names in front of her. One name was Wayne Bell Rhythm. I said, "Wayne Rhythm! Is he your son?" She said, "Yes, and I'm very proud of him."

    There's no accounting for what goes on in my brain :~)

  20. lillieblake

    lillieblake New Member

    Not sure of what you are describing as a brain pain. Do you mean the inside of your legs are weird - like they are separate from the outside of your legs?

    I decided I don't have RLS - took Mirapex trial pills and made it 1/2 way through the second batch and decided this was dumb, so quit. Saw the neurologist the next week and told him. He was ok with it. But he did put me on Iron - and he told me why but I forgot.

    I lost my brain when I got this DD.


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