How bad are your spasms

vickyb · Post by **vickyb** » Wed Aug 22, 2012 3:27 pm

For those of you with RLS that experience limb movements, how bad are they?
I have had restless leg syndrome for a very long time, and had it confirmed with two sleep studies. I'm not sure its not more appropriate to say its periodic limb movement disorder, though I also get the urge to move, so I don't know what it is.

Anyway, when it gets really bad, either over-tired or augmented by medication, I get crazy CRAZY spasms, sometimes even while awake. My arm will shoot out, or a legs will flail wildly. If I really think hard about it, I can control it, but if I relax for a moment, *bam* spasm. My arm will shoot in the air or leg will raise my foot 2-3 feet off the ground. It's quite insane, actually.

Which makes me wonder if it's really RLS or something else just because of the extreme nature of the spasms. The rest fits - happening when I'm really sleepy or laying down or when asleep. The urge to move around. The weird twitchy body sensation. Anyway, part of why I'm asking is that RLS can be comorbid to other conditions, and I often wonder if there isn't something else going on.

Post by **Chipmunk** » Wed Aug 22, 2012 5:55 pm

I'm not really sure why RLS tends to go with PLMs, but I know that many people with RLS will have their limbs jump if they don't move. It happens to me when I'm lying in bed reading a book or trying to go to sleep. When I'm on meds that are more effective, I still have jumps but they are very small, closer to twitching.

Unmedicated the jumps are about a foot or two off the bed. I don't usually have them while I'm standing or sitting, probably because I'm rarely still in either of those situations.

rthom · Post by **rthom** » Wed Aug 22, 2012 7:29 pm

Mine is like that as well. I can control it for a second or two when it is really bad but inevitably I have to move or let the jump happen or it will happen anyway--only more intense and painful (the muscles feel like they are tearing if i keep trying to stop the jerks). It is very exhausting and there is no way at those times I can do anything at all. I then have to go to the hospital and have them stop the jumps/jerks with paralysing type drugs. I learned my lesson the last time--I keep a better control of the symptoms now at home and don't allow it to go so far.
I also have both RLS and PLMD. Found during a sleep study as well.

Post by **ViewsAskew** » Wed Aug 22, 2012 7:38 pm

I go through periods with no limb movements while waking, and others where they are terrible.

For me, they are always worst when I'm on a dopamine agonist and I've augmented. I can be standing and have my leg shoot out from under me. Without something to hold on to, I'd topple over. Several of us have commented that during augmentation they are absolutely awful. I hate to say it Vicky, but sounds like you're one of us! Guess it's better than the alternative - not knowing what it is.

On the meds regime I'm on now, I have none. Can only hope this continues for a nice stretch.

dogeyed · Post by **dogeyed** » Fri Aug 24, 2012 10:49 am

I've had all sorts of strangeness with my RLS. Started in one leg, eventually both, got in my arms, and a couple times I nearly jerked right out of my chair! Really startling. The most movement I've had is when my legs get to kicking in the bed. One time I was pulling some support knee-high stockings on, and I noticed these little fibers in my calf muscle were rippling all over the place, in a small area, very peculiar looking. I also have back problems, including the lower back, and at first my family doc sent me to a neuro to make sure it wasn't my bad back doing this, but he declared RLS. Since I've been taking codeine for all this, my RLS is just a shadow of what it was. It is strange, tho, to be sure, how the urge to move kinda takes over. GG

debbluebird · Post by **debbluebird** » Fri Aug 24, 2012 10:06 pm

My husband said he would have never believed it until he saw my legs jumping a foot to two feet off the bed. If my leg/legs start before it's time to take my meds, then I have to take meds and walk around. If I don't, then it slowly gets worse and worse. It starts with a slight sensation and each time (every 3 seconds) the activity gets worse. Different things will get my leg going. Doesn't always affect both legs, usually just one leg. If I have been in a car ride too long or increased physical activity, it will set my leg off. It has gotten worse over the last 5 years. I have changed my meds many times. Who knows what the future will hold. DEB

Teacher516 · Post by **Teacher516** » Mon Aug 27, 2012 2:26 am

I am scared about what the future will hold for me as well. Diagnosed witth RLS last summer. Getting increasingly worse. Started at night and now has moved on during the day. Can't sit down for an extended period of time like a concert because the legs will go. Very embarassing and annoying as all hell! I feel that it will never get better and will just get worse. Very upset over it.

Post by **ViewsAskew** » Mon Aug 27, 2012 3:22 am

Teacher516, what are you taking? It doesn't always progress that fast unless you're taking a dopamine agonist such as pramipexole or ropinerole.

dogeyed · Post by **dogeyed** » Mon Aug 27, 2012 11:49 am

TEACHER, I agree with Ann, medicine is the solution, might take trying out a few to get things straight, it's an ongoing process, but the drugs do prevent one from going crazy and settles the legs down.

Teacher516 · Post by **Teacher516** » Thu Aug 30, 2012 11:44 pm

taking ropinerole

Post by **ViewsAskew** » Fri Aug 31, 2012 3:20 am

Teacher516 wrote:taking ropinerole

It may be something else, but sounds a lot like you are augmenting. Are you familiar with that term? If so, ignore what I'm going to say.

Augmentation is when the medication (ropinerole and pramipexole are the most likely ones) cause the symptoms to occur earlier, last longer, be stronger, etc. There is a LOT of info here about it. Search on the term and you'll have a lot of reading to do and to help you.

vickyb · Post by **vickyb** » Fri Aug 31, 2012 6:46 pm

Thanks everyone for your responses. I was starting to think I was the only one. It seems like most doctors (aside from my sleep doctor) don't appreciate how bad it is or how over exaggerated the spasms can be.

Teacher516 · Post by **Teacher516** » Sat Sep 01, 2012 4:35 am

thank you, viewsaskew for that information.

Elzier · Post by **Elzier** » Mon Sep 03, 2012 11:47 pm

Hello group,

Am diagnose with RLS last month. Am so miserable ,can't sleep at night, wanted to switch my sleeping to day time can't sleep either.
Am taking requip and ambien for my legs spasm, it only works for few nights. I had 3 days/24hrs without sleep, tired, slurred speech, weak, don't have apetite, i lost a lot of weights.

How will you sleep?
Give some tips on how to manage this wierd disorder.

debbluebird · Post by **debbluebird** » Tue Sep 04, 2012 1:47 am

Elzier, Ambien is probably causeing some of the side affects. You probably need to add another WED med. I have had better success with Tramadol, Methadone, and before that Oxycodone. Only take the first two now with Gabapentin. Requip and Mirapex don't work for me anymore due to augmentation. I'm sorry to say that it is trial and error. You might try cutting out caffeine and alcohol, they go against most of us. I hope you have a doctor that will work with you. DEB

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