RLS nightmare: If you're having severe... - Restless Legs Syn...

Restless Legs Syndrome

22,320 members16,386 posts

RLS nightmare

Suzytom profile image
7 Replies

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.

Written by
Suzytom profile image
Suzytom
To view profiles and participate in discussions please or .
Read more about...
7 Replies

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.

gypsy49 profile image
gypsy49

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 :)

johannasuar profile image
johannasuar

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.

justcrazer profile image
justcrazer in reply tojohannasuar

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.

Pippins2 profile image
Pippins2

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

MumofSam profile image
MumofSam

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.

dena1 profile image
dena1

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.

Not what you're looking for?

You may also like...

Current RLS journey

I've had RLS for about 12 years, and am also Hypothyroid. I search everything I can to find help....
Suzytom profile image

Rls

I just want to say I’ve suffered badly with rls and insomnia for years and my sleep pattern has...
Hoochybaby profile image

RLS nightmare.

My RLS is probably worse recently than it has ever been. This past few weeks have been terrible....
Derry323 profile image

Understanding my RLS Symptoms

Hi togther, I am new to this board and registered because my RLS spread to my arms, shoulders,...

RLS relief after MANY years...

I have suffered for many many years with RLS and now at the age of 41 I think I have come across...
chrillo1976 profile image

Moderation team

Kaarina profile image
KaarinaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.