RLS nightmare

If you're having severe jerking of your legs, and/or arms, RLS may not be what you have. I read on the internet that RLS is just a mild sense or urge to move your legs. NOT! What I have is MASSIVE, SEVERE jerking, and I know you do too. A doctor told me that I may have what is called "Monoclonus". But whatever it is, it's really terrible. There are times that I am so desperate for sleep, all I can do is cry out to God, since He's the only one who can do anything about it.This is the most insidious disease I have ever heard of. It causes great sleep deprivation, so that at times you don't even know who you are.

I find that it helps to get up and walk around as much as possible. I also am Hypothyroid so my body doesn't like heat. Sometimes it's related to how warm my body gets, so I get up and go out to the living room, turn on the TV and chew on a glass of crushed ice. It seems to cool my body down, and next thing, I'm heading back for bed.

I can't usually sleep for more than two hours at a time. I get my best sleep after 5:00 am.

It helps a whole lot if I :

Take my Iron tablet every other day.

Take 400 MG Magnesium, 600 MG Calcium, 10 MEQ Potassium every night.

Let the fan blow in my face.

When I had a "Sleep Study done, they discovered that I have sleep apnea. I also have low oxygen levels. So now I sleep at night with oxygen running and it helps me to sleep better (maybe 3 hours), waking up jerking and then to the bathroom, back to bed and sleep another 3 hours. (better than nothing).

So maybe the answer for you may be the same. I sure hope so. It's 2:41 am and I'm up with jerking legs, praying for all of you who are up too. Maybe there will be an answer someday. God knows.

7 Replies

oldestnewest
  • However, myoclonus may be a symptom in more complex and disturbing sleep disorders, such as restless legs syndrome, and may require treatment by a doctor.

    Taken from:

    ninds.nih.gov/disorders/myo...

    UNfortunatelt its RLS I have. If you find it occurs more often in the evening/night and it is relieved fully/slightly by movement its likely to be RLS and I've done my share of praying and begging God for it to end, I don't think he/she/it/they are in the position to do anything about it :(

    You can seek help from a Dr who may prescribe a dopamine agonist such as Mirapexin, which comes with its own set of problems or opiates/opioids again bringing their own problems.

    I feel your pain Suzytom, this is a nightmare of a condition and when its bad with me I don't sleep and it lasts about 18 hours a day - a waking nightmare.

    At the minute its pretty well under control although I lay and kicked and turned til 5.30am (didn't have the energy to get up) and I'm exhasueted at teh moment, life sure ain't easy with this but do look into the drugs as they can help.

    Have a look here for some treatment options:

    rlshelp.org.

    or here:

    rls-uk.org

    Good luck.

  • know the feeling gone 6am im shattered going try some sleep arms legs think they shold be doing irish dancing lol hope you got some sleep :)

  • What ever your doctor wants to call it it's fine, however, you're definitely describing RLS symptoms. Have you tried any medications related to RLS? You're only taking supplements and that's not going to get you very far. I take a pill called TRAMADOL, many people with RLS take it and it works great for me and others BUT not for all. It's a pain killer with no side effects, it's the least of all medications to cause augmentation ( augmentation will be explained by others better than I can) it lasts all night and the dose I take is very low. I've been on TRAMADOL for five yrs. with great success. I have RLS ALL OVER my body but mostly arms and legs. Ask your doctor to let you try it, some doctors don't really know much about RLS or what to prescribe for it. I take a 50 mg pill at 5:30 pm and another at 11:30 pm, afterwards I forget I have this wretched disease. If you decide to try TRAMADOL, it won't hurt to do so, start with just one pill of 50mg and see how it goes. I found that the trick is to NOT let the RLS start because then it's harder to take control, it will work but takes longer to stop the awfull feeling. Good luck. Let us know what you decided to do.

  • it is bad enough to go thru life with this but people around you have to go thru it with u or stay away .we can't do any thing about it.

  • If the jerking of your arms and legs is involuntary rether than you yourself actually moving them then it sounds more like Periodic Limb Movement disorder (PLMD) rather than RLS.Nocturnal Myoclonus is the old name for PLMD

  • I've always said that with RLS the jerking or movement of your legs (or arms) is voluntary, not involuntary. I've suffered from RLS all my life (53 years and counting) and whereas the desire or need to move is overwhelming to get rid of the sensations, it is still your own conscious decision to move or not, however tortuous it might be. If your moving or jerking is out of your control then I believe it must be another condition, and not RLS. I should just add that RLS isn't a mild sense or urge to move your legs, it's an intense urge that is torture if you can't.

  • When RLS is really bad it goes to my arms and upper body. I am currently experiencing withdrawals from Requip. I think the upper body thing is from that.

You may also like...