Restless Legs Syndrome Support Group

Restless Legs Syndrome (RLS) may be described as uncontrollable urges to move the limbs in order to stop uncomfortable, painful or odd sensations in the body, most commonly in the legs. Often sufferers think they are the only ones to be afflicted by this peculiar condition and are relieved when they find out that many others also suffer from it.

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Sleep Disorders
/ Restless Legs Syndrome Support Group

question about new case

SweetPea3323
SweetPea3323
It all started in my late teens early 20's. I used to sleep really well no problems, but than I devloped problems. I wasn't sleeping well at all, and my legs were buging me. Nothing serious they'd twich a little here and there, I'd toss and turn a lot, and I'd wake up a lot during the night with werid feeling in my legs that didn't want to stop. At the time I had never heard of RLS before and I thought it was silly to bother a docter about my legs. All I really did know is I set into a long pattern of not sleeping well at all. Later on I tried over the counter sleep aids and that seemed to help a little bit. but I'd still wake up. After I got married my wife told me my legs would twitch in my sleep. I also started to see ads on tv about RLS. I still didn't rush into my doc. I didn't want to have it. It wasn't until this summer when I started to notice it wasn't just bugging me in my sleep anymore. I was getting the same werid feeling in my legs at work. At frist I thought I was just on my feet too much, but it didn't feel sore, and I could take tylenol like candy and it never really did much, so finaly with a nudge from my wife I took a vist to the doc and it is what I feared it was.

I wanted to share my story to see where it compaers to others. My legs like to twitch a lot. They feel like there are a million bugs in there crawling around. It's worce at night, but I am getting the crawling feeling during the day too, and when I sit or lie for long periods of time it bothers me. It's kind of confuseing me there is no family history of any kind of RLS, and I am pretty young in age only 26, I thought this was something only older people went through. The docter wanted to try anti-depressents first he said if that didn't work he'd start me on Requip, so far it's not helped any. So if this sounds familiar to anyone I'd like to hear from you, be really nice to know that I'm not alone in this. thanks
deleted_user
deleted_user
Mine started out with just a need to keep shifting my legs all night long. They do twitch but I've had 3 back surgeries and a lot of nerve damage. I thought it was all related to my back but was told by my neurologist that it was RLS along with the nerve damage. I do have the sensation of bugs crawling in my legs also. No medication the Doctors gave me helped. I use a supplement that has stopped the RLS. You just have to try different things and see what works best for you.
deleted_user
deleted_user
My story is much the same as yours. I am only 24 but i also suffer with FM.
I only spoke to my doc about it 4 months ago and i tried drinking tonic water and that did not work. Has your doc checked your iron levels? If they are low that can cause rls.
I started on Requip about a month ago and i am aiming to get up to a dose of 2mg but i am really taking my time as i know it can have bad side effects but so far i have got up to 1mg with no side effects and although they are helping a lot i still have minor rls every now and again but it has improved significantly
deleted_user
deleted_user
I had restlessness and had to get up and walk around at night, and it carried over to the daytime-- it started in my late twenties, and had continued.. eventually I had twitching of my arms and legs. Requip helped for a while, then symptoms got worse. I was changed to Mirapex, and clonazepam which I use just intermittently. Things are better... long flights are still a challenge. I have been happy with treatment from a neurologist who also is a sleep specialist. Hope things get better for you soon. I think everyone responds to different regimens, so hang in there, talk to your doc, and give things a try.
SweetPea3323
SweetPea3323
I saw my docter last week and he started me on Mirapex and it's not helping as much as I would like. I plan on talking to him about checking my iron and clonazepam. It's rough me legs flap around like a fish out of water. I'll keep this updated
deleted_user
deleted_user
RLS can feel like bugs crawling. Mine feels like my muscles are being pulled like knots. It is uncomfortable enough that I cannot sleep or sit or relax. I take Requip. 2 mg. at night before bed. It made me very nauseaus at first. It also made me dizzy, and it was hard for me to walk. I'm a little more used to it now. I also suffer from depression, and the only antidepressant I can now take is Cymbalta. All others cause RLS to be much worse. RLS symptoms are different for different people. My brother-in-law has sensations like thumb tacks poking his legs. With everyone I know who has it, it started out barely noticeable, and got worse as time went on. Good luck.
deleted_user
deleted_user
You're not alone. It affects all walks of life. I have it 24/7 and I now take methadone and neurontin to treat it. Worse part is, I am only 31 years old. RLS and my bipolar disorder almost ended my life...you can read more of my posts for more about me...
deleted_user
deleted_user
You're definetly NOT alone. My RLS also feels exactly like bugs crawling. I went for years not saying anything to anyone, bec. I too never even heard about RLS as an actual condition until they started running the Mirapex ads. The first time I saw the commercial I was stunned & relieved to know that I wasn't the only one! I'm not on anything because I don't have a job or any kind of insurance right now. The two things that do work for me, though, is drinking (a lot) of water before I go to bed & leg exercises (before bed). This is such a pain, though, because with the water, i'm constantly up, going to the bathroom & it takes me longer to get to sleep, so I've had to time it. But, I'd say it works for me 90% of the time & the rest...I just live with it. Luckily, mine only happens either at night or during long periods of sitting during the day, ie: plane flights, staff meetings. Hang in there! :)
kate93
kate93
Yep, you have the typical RLS. I'm 53 and mine just started about 10 years ago. Mirapex didn't work for me, either, but I take both Requip and clonazepam and get relief during the night but it wears off during the day. Good luck!!
kate
deleted_user
deleted_user
Dude:I was fairly the same as you, but I had a symptom free period of a 2 decades, but it came back real bad a few years ago when I got fibro, RA and CFS as well. Read my other posts. Consider pursuing LDN therapy, you likely don't need to quit your other meds but this is cutting edge stuff at the moment, my doc is the only one doing clinical research on RLS and LDN.

red pill
soulsearcher83
soulsearcher83
I was diagnosed last year. My doc thought I had sleep apnea bc of my weight. Thank God I don't but he said I had rls and periodic leg movement i think it was called. Since I had anxiety I thought that my legs were just part of it. But I'd wake up most mornings doing a marathon in bed, my legs just flailing. Who needs to train on a treadmill for a 5K when have RLS? Sinemet worked for a little and Requip put me in the hospital with severe chest pain. Persuing clonazapam as an option since I already take it for anxiety. I have started to notice the last few months that occassionally, not everyday, but sometimes I get twitchy in class or at my computer. So I shake them a little or ignore it. It's not a problem during the day for me. The night it drives me nuts. Mosly bc I wake up feeling like I didnt sleep at all and I think that it's starting to get worse at night.
deleted_user
deleted_user
Hi Jissel,
You are describing my legs. I was about 16 when I first remember having problems in my toes. They were always uncomfortable at night, then it crept from my toes to my lower legs and then it was in my full legs. I am much older than you so I have had this for 40 years, long before anyone had ever heard of it. It has only been in recent years that I have had a doctor try to help me with this. I take a drug called Mirapex. It helps somewhat but most evenings I have a very difficult time. If I sit for very long during the day, they bother me. Sometimes only one bothers me and sometimes both.
You are not alone. There are millions of folks that are suffering. Have you checked the RLS Foundation? Google it and you will find more information. I also recommend "Sleep Thief" , a book written by Virginia Wilson/ There are many testimonies by RLS sufferers.
I wish you well Jissel.