How many have Restless Legs Syndrome

Discussion in 'Fibromyalgia Main Forum' started by gapsych, Feb 9, 2009.

  1. gapsych

    gapsych New Member

    I am wondering how many people have been diagnosed with RLS, how long they have it, and was it before or after being diagnosed with this DD?

    I have had it since I was 16, way before this DD, but only sporadically during the summer and did not have to go on medication until about 12(?) years ago. I don't know if it would have become worse with this DD as I was already on Trazodone for sleep.

    If you have it, what medication(s) do you use and how effective are they? At this point, I am taking Miripex when I need it. When I use it, I do get more daytime tiredness.

    I find my RLS is similar to my FM pain, which is a deep, down to the bone throbbing ache and feeling like I have the flu.

    My FM pain is most extreme in my legs.

    My RLS is a bit different but it is hard to explain how it is different. Maybe not quite as deep, but very uncomfortable. I get the RLS right after I first go to sleep and very early morning but I think that is the time my sleep is lighter.

    However, I have also been awakened from jerking or moving my legs during deep sleep.

    Just curious.

    Thanks in advance.

    [This Message was Edited on 02/09/2009]
  2. sharina

    sharina New Member


    I have suffered from it for years, prob from about 3 years after getting ME. It only happened when i was laying down to sleep.
    Sadly to say i get it in other parts of my body now. My arm and face but still mostly in my leg.
    I have had ME for 11 yrs.
    I dont take anything for it exactly but do take diazepan for anxiety as its then it is at its worst.

  3. TeaBisqit

    TeaBisqit Member

    I've found that caffeine will trigger off RLS in me. Once I cut that out and chocolate, basically any stimulant and alot of bad food ingredients like aspartame and sodium benzoate I don't get it like that anymore. I also cut out as much aluminum as possible. I no longer use regular deodorants and I try not to buy soda in cans. Since doing all that, it's much better.
  4. gapsych

    gapsych New Member

    I think caffeine triggers my RLS as I am not in such a deep sleep and like you said your body is overstimulated which we do not need.

    I neglected to mention that if you are anemic, it makes the RLS worse and for some people that may be from not eating the right foods.

    I do eat healthily, most of the time and also do not use reg. deodorants. Even took magnesium which did not help. I do find soaking in Epsom salts will give me temporary relief. I have a pretty severe case, so what may not work for me may for someone else.

    Thanks for the tips.
  5. gapsych

    gapsych New Member

    I sometimes will get the RLS in the lower arms but usually am in a lot of pain before it hits there.

    The clonazepam with the Trazodone really worked. I am now off the Trazodone and there are some nights will need a Mirapex. However, when I go to bed, I don't know if I am going to feel the RLS or not.


    Is PLMD really the more severe form? I would think that if you move your legs around a lot that would be even more disruptive to your sleep but maybe it isn't. I do move my legs but I wonder at what point the RLS turns into PLMD or if it can progress to that.[This Message was Edited on 02/09/2009]
  6. maps1

    maps1 Member

    restless legs very occasionally but when i started taking immovain for sleep it was bad every night. now i take requip every night as well (this is a parkinson med)

    BILLCAMO New Member

    and others .....I've been fighting RLS since about 6 months after I "got" these DDS. My arms are also often involved.

    The only non-RX relief I have received are from Hyland Leg Cramp pils. They have a small amount of Quinine in them. Thanks to the ambitious efforts of our government , they have been removed from many stores shelves since they contain Quinine.

    When I have the funds , I can still buy them via the internet directly from Hyland. Who knows how long that option will be available.....;>0

    They've helped me more with fewer side effects than other "options". But , each individual is different.

    Blessings ,

  8. MIssAutumn

    MIssAutumn New Member

    I've had it for years and by accident when I was going through a book on supplements found that if you take Folic Acid it will help. I take about 6-7 tablets when it starts up.. One thing I found is that it doesn't help if I take it before I go to bed or if I sit for too long, I have to take when it hits, but it's the only thing I found safe that does help. also, when I started taking bio identical estrogen it has help tremendously, I very seldom get now unless I decide to off the BioEst for a few days.

    Mine got so bad in the beginning my leg would literally jerk up! Almost knock myself out if I was sitting down LOL And boy did they hurt.


    BILLCAMO New Member

    PLMD = Periodic Limb Movement Disorder.

    I searched for memorylane's post of list of medical abbreviations. It was very good and helpful. Unfortunately it didn't seem make the trip from the old board to this new one in a user friendly form.

    I've posted a request on the tech support board to see if it could be corrected.

    Blessings ,

  10. gapsych

    gapsych New Member

    In the weekly email from PH there is an article about Mirapix helping RLS.

    There is also a study that shows Mirapix can help with the pain of FM.

    The "pain" of both are similar for me.

    [This Message was Edited on 02/11/2009]
  11. msbsgblue

    msbsgblue Member

    I can tell you his legs and arms jerk and sometimes his entire body.

    Hylands also now has a restless leg pill as well as leg cramp pills. I, too, have restless legs and just tried a new bottle of restless legs by Hylands. They work even better.

    Very reasonably priced, I think the leg cramp ones are less then $5. per hundred and the other is less then $4.
    [This Message was Edited on 06/01/2009]
  12. Janalynn

    Janalynn New Member

    I remember distinctly the first time I felt the horrible, weird feelings of restless legs, it was when I was pregnant with my 2nd son- 17 yrs ago. I thought it was a pregnancy thing (which I had heard you could get), but it never really went away. However, it was only sporadic for many years and got much worse a few years ago. My doc said by my description that it was RLS.
    However - I not only get it in my legs, but sometimes in my arms as well. I notice it mostly when I'm just falling asleep. My legs jerk so badly that it almost hurts, it's such a jolt. I even had my stomach feel like it was jerking one night. Talk about a strange feeling!

    Mine is worse sometimes, better at others with no real reason that I can find. I wonder if I might just have PLMD.

    Sometimes it feels like everything is jerking - my muscles are always twitching, my reflexes are hypersensitive etc.

    I used to have horrible cramps, (calf, foot) does or did anyone else experience that? - wonder if it's more common with those with restless legs?
  13. ourlife

    ourlife New Member

    I have had RLS for years and just have been diagnosed with FM. Mirapex works. I used to kick my husband or have to sleep standing up but now i take that and i havent had any problems. You should ask your doctor about it. I tried Requip but it didn't work for me. Mirapex is a miracle drug..i have gotten so much more sleep since i have been on it.
  14. Pansygirl

    Pansygirl New Member

    I had this for several years before my fibro decided to show up full time in my life.

    Mine happens while I 'm trying to fall asleep. And it's not every night , so like Janalynn
    I don't see any real reason why sometimes it's worse than others.

    I've heard that the leg cramps or was it the restless leg that is a vitamin deficiency ~ but I've been taking daily vitamins for over 4 yrs so I can rule that out I think. Smile

    I have also had the horrible calf/foot /and toe cramps that are excrutiating and these happen
    during the day~ sometimes after walking but most of the times again no real reason that I can see. :(

    I've never taken any meds for the restless legs , I guess since it was intermittant that
    I never talked to my doctor about it.

    Take care , Susan
  15. gapsych

    gapsych New Member

    If you are deficient in iron it can make your RLS much worse which I can attest to. Magnesium is suppose to help but I can not tolerate it. However, epsom salts do help but for only for about an hour.

    My RLS is not cramping but kind of an ache. Mine was always intermittent usually during the summer. Go figure.

    I did not take any meds. for years until the RLS became much worse. I take clonazepam and a very small dose of Trazedon which helps. Some nights I need Miripex.

    For such an innocuous name it can be extremely uncomfortable. I think that is an understatement.

    I find the RLS is somewhat like my FM pain but not exactly the same. It is hard to explain it.

    I remember in my teens, having to pace during the night as it was the only think that helped.

    Have you had a sleep study? My neurologist got a lot of valuable information from my sleep study.

    Take care.

    ETA I just realized that this post was started by me!!!
  16. Pansygirl

    Pansygirl New Member

    I was deficient in iron back in 2004 but actually started noticing the RLS in 2002 if my memory
    is working. smile

    But since that time I've been taking my vitamins on a daily basis so I should be okay with that.

    I haven't had a sleep study but it has been on my mind that I need to look into it. I need to find out if insurance covers it and if so how much. I almost always wake up several times a night.

    Do you take the meds daily for the RLS ? Are the clonazepam ,Trazedon, Miripex all for the RLS?

    yes you did start this post. Smile
  17. gapsych

    gapsych New Member

    I have been taking the trazadone and clonazepam for the rls but also for sleep.

    I might need the mirapex once or twice a month.

    Have you your ferritin checked? Your blood count (?) sorry brain fog, can be normal but your iron storage, ferrtin can be low.

    Unfortunately, your blood levels can be fine and still have RLS. The deficienty makes it worse but does not cause it. RLS is considered a neurological problem that effects your sleep.

    I hope this makes sense. I am tired. If it doesn't, let me know.

    Take care.