NEW COMERS - SYMPTOMS TO KNOW IF YOU ACTUALLY HAVE IT

[BuggedGuy]

LET THIS BE A PLACE WHERE EVERYONE DESCRIBES, IN DETAIL, HOW THEY FIRST CAME TO REALIZE, FOR SURE, THAT THEY HAVE RESTLESS LEG SYNDROME...

TRY TO REMEMBER EVERY FEELING THAT YOU FELT AT THE BEGINNING...
TRY TO REMEMBER EVERY FRUSTRATION YOU OVERCAME...
TRY TO REMEMBER THE LITTLE THINGS THAT MAY HAVE LEAD THE READER TO THIS VERY SITE...

DESCRIBE IN AS MUCH DETAIL AS POSSIBLE HOW YOU CAME TO REALIZE THERE MIGHT BE A PROBLEM WITH YOU...


PLEASE DO NOT POST REPLIES ON THIS STREAM...SIMPLY LET THE READER SCROLL DOWN AND HEAR HUNDRED'S EVEN THOUSAND'S OF PEOPLE DESCRIBE THEIR REALIZATION...

[ViewsAskew]

I don't even remember not having RLS. . . but I don't think I always did. I think I always knew I would, so when it started it wasn't anything big. You see, my mom has it. My grandmother had it. I grew up watching my grandmother shake, shake, shake those legs as fast as she could. Someone here described it as sewing machine legs. Then she'd walk, walk, walk, up and down the hallways. Sometimes she'd be up until 3, 4 or 5 in the morning, all the while shaking or walking. Even though at the time no one knew what it was, I jsut assumed it was a family thing. The one thing I remember about it when it started was that I worried that I was just imitating them! I was in my mid-teens. At first, I thought I imagined that I felt what they felt and was jiggling, jiggling, jiggling as a learned response. Too bad that's not the case . I was in my 20's when I realized it was a 'real' disorder. There wasn't much of an 'aha' because I already knew it was real and that we all had it. The only thing that did was to give it a name instead of jumpy legs. Mostly in the family, it's still jumpy legs, though, even though we all know what the 'real' name is .

[thechic]

I've had rls as long as I remember, but didn't know what it was. Runs in the family. I remember in eighth grade my legs went completely numb and I thought I was paralyzed - it was math class, the last one I needed to miss. I can still see myself sitting there, I can picture everything around me like it was yesterday. That was then, I'm 28 now and it's still here!!!! Remember my mother shaking her wrists and hands, and legs especially later at night or if she'd been sitting down. It's so much a part of our lives that when I asked my stepdad (been with us 16 yrs) if he knew what I was talking about and explained what mom does he said he'd never noticed. It's such a part of life he just wrote it in!

Robin

[umpwidow]

Symptoms: Early on they were general weakness, my legs were shaky when I'd go down the stairs, my hands were shaky but not visible, I was exhausted, and my eyes were sore.

I couldn't stay in my seat very long at work. My concentration went. I began running red lights and not being able to pay attention to driving. I couldn't do simple math. Focusing and remaining on task was difficult.

Within 14 months I developed migraines.

I was tired all the time. I'd come home and sleep at 6:00 pm. I'd sleep virtually all weekend

By the end of the two years my speech was slurring, I was dragging my left foot at one point, I couldn't lift my left arm to blow dry my hair. My hands would visibly shake when I'd do things. My whole body would shake when I'd lay down. I stuttered. I couldn't remember words. I couldn't remember how to spell some words. I was tired all the time but couldn't sleep.

[NashvilleSinger]

My sister has RLS and thats the only way that I knew i had it or that there was a name for it. I always just thought i was a fidget...
I remember it starting years ago, as a teenager (im 32 now)...
I always move my feet and legs around when relaxing... however, it isnt severe... my sister has a much more severe case and Im imagining that mine may get worse as time goes by...
It doesnt keep me up at night... only on occasion....
Mostly it is just a fidgeting sensation to where I cant stop moving my legs/feet.

The problem I have now, and I dont know if this is in any way associated with RLS... my hands seem to be shaky...
Like as if i had parkinsons disease or something. I can be sitting there and they will be trembling or when I try to hold a spoon, it can get really bad.
Does anyone have any insight on this? Is it related to RLS possibly?

Thanks!

[umpwidow]

Nashville,

My hands shaking were one of my very first signs. That's why the first neuro gave me an anxiety dx, I was put on meds for depression, and when I had a psychotic reaction to them, was then given a bipolar diagnosis. Spent the next 18 months treating the shaking hands as mania until this second neuro figured out the RLS. I'd never heard of RLS until I was diagnosed. I was visiting multiple sclerosis and parkinson websites as that was how bad my symptoms had gotten from the sleep deprivation.

[Lovechild3113]

I have had RLS for almost a year now. I remember 17 months ago when I was giving birth to my son and how it felt like I was having contractions in my legs. It was terrible. Then after I had him the feeling went away. Then a couple months later, I can't remember exactly when, but my legs started killing me, so I went to the doctor, and they could not figure out what it was, until a month ago I finally got to see a neurologist, and he diagnosed me with RLS. I am currently on Ultram and Neurontin. It really helps. Before that I was on Kadian, and that helped even better, but it was like moriphine, and the doctors did not want me on that anymore because whatever I am on, I will be on forever, said my neurologist, but I also have other symtoms, like my legs cramp really bad, the worst pain I have ever felt, and I get very weak, and I also get hot and cold sweats, REALLY clammy feeling, but no one else seems to have these symtoms, so I am very confused. Please help with your comments.

Lovechild3113@aol.com
Lovechild3113

[cornelia]

Hi Jamie,

I can follow up on the others who answered your post as regards to the sweats. I have had hot sweats as soon as I started meds and still have. I am on Requip, Ultram and Neurontin. I am used to them now and take no notice anymore. The hot sweat is most of the times in my face. There are so many side effects of meds we have to learn to live with. When I experience strange things in my body I always go to www.rxlist.com and read the side effects of my meds and then I feel reassured. If you can't cope with them you could ask your doc to try somethings else.

Good luck, RLS is not a nice thing to have, you have to learn to try and live with it. On this board you can vent, ask questions, learn to cope.

Corrie

[Sleepyhead]

I remember "growing pains" as a child starting around 5yrs. utill the present. (I am now 55yrs.) It has been present for all of my life but worse at some times. I could connect it with monthly cycles and I knew when I was ovulating by my leg pain. When I started menapause it went crazy. It was at that time around 10yrs. ago that I knew I couldn't live any longer without help. I was getting suicidal thoughts always passive in nature like "It would't be so bad if on my way to work today, my car was hit and I crashed into a bridge abutment" or something wonderful like that. I had gotten to a point where if this was the quality of life that I was going to have I really didn't want to go on. I thought that my family would be better off without me because it was gettiing harder and harder to participate in everyday things. This is what sleep deprivation does to a person, it not only causes real physical fatigue but total mental collapse also. One day on my way home from work, I actually fell asleep at a red light. I must have closed my eyes when the light changed & I didn't even realize it till the car behind me started honking when the signal changed. This really scared me, I often had my grandaughter in the car with me and even though I didn't have much concern for my own life, there was no way I was going to jepordize her or anyone else in my family. I started to seek medical help and decided that I was going to go to as many doctors as it took to find help. For me, it was a sleep disorder specialist that finally helped.
This disorder runs in my mothers side of the family. My mom only had RLS while pregnant and then it left her. My grandmother had it worse but taking Quinine (an old remedy) seemed to give her relief. While visiting relatives in Ireland, I questioned if any of them had RLS and found that both a cousin and an aunt had "Jumpy Legs" as their family referred to it. So far, both of my kids ages 33 and 35 have not had any symptoms and after living with me, they are very aware of what to look for . I am afraid that my grandaughter now 13yrs. old is going to be the next one in line. She had "growing pains" when younger and now has leg pain occasionally.
Stress also plays a big role in RLS for me. Of course, what isn't worse when you are under stress? Well, that is my story. Hope it has been of some help.

[becat]

Hi Sleepyhead and welcome to our little RLS family.
You and I could be related. Your story is much like mine. I got this genetic gift from both sides of my family. Yes, a bit Irish myself.
Mom's side of the family worse. But had to say "thank you" for talking about that time of the month. AND knowing when you ovulated. I always have too. The link below talks about this very thing. Interesting reading and it has a name. (TY SLy for finding that info).
http://www.babyhopes.com/articles/painf ... ation.html
Yes, I would have to agree, sleep deprivation is just unreal. It's not a natural way to try to live. Thankfully, I never fell asleep in the car, but I can understand it. I chose not to drive when it's bad. Not always an option, but being aware of the problem helps.
It's tough knowing you've pasted it on, isn't it? Thankfully, my son has a mild case for now. I fear that it will be worse on my grandchildren (future, that is), this has been the family pattern thus far. Having spent time with 19 members just last month, 13 of us had it. Interesting watching the workings of a family with RLS trying to move around a house constantly.
I'm glad you shared your story.
There's great people around here just like yourself. I'm glad you showed up and hope you do again soon.

[rockchk71]

I am new to this site, and have done some research since first hearing the term RLS. It started in full about 10 years ago (age 24). On some nights, I would wake up, look at the clock and inevitably it would be around 2 a.m. My legs felt "twitchy" inside and I had the urge to keep stretching them out. My arms would also get the sensation. It is so hard to describe, but basically they just feel like they need to be stretched out. I would read, watch TV, do whatever I could but usually could not get back to sleep for 3-4 hours, and have to get up about an hour later. I remember always having a flood of relief wash over me when I could finally sleep again, and feeling absolutely exhausted. This would usually happen 3-4 days in a row, then go away for an extended period of time. One night it happened, and was pretty cold outside. I turned on my space heater and laid down on the floor with a blanket over my legs and heater. I quickly found the heat helped tremendously and I was able to get to sleep quicker, usually within one hour. I thought at first it was just nerves or stress or something, but a friend of mine who was a doctor said the fact that it always happened around the same time pointed towards a biological concern. Finally one day my mom read in a Readers Digest about RLS, and I started reading up on it. I've tried various non-prescription remedies (vitamins, herbs, oils, heating pads) and I still find the quickest way to relief is the space heater. I have also discovered my episodes happen more frequently if I am sick with a cold or virus, and the symptoms are aggravated and triggered if I take NyQuil or any night-time cold medicine. I'll stop babbling on now, but it's good to know I am not alone in this and there are others who are in the same situation as I.

Stacey

[Lovechild3113]

Hey Stacey,
My name is Jamie. I have had RLS for a year now. The best meds that work for me are Ultram and neurontin. You need to go and see a neurologist. Also stretching and walking helps too, but the meds work the best, but of course, everyone is different. I hope this helps.

Jamie
Lovechild3113

[bjf]

I have had rls for as long as i can remeber. mid teens until now (30). I had always thought it was my body's way of telling me that i was exhausted and that i should go home. It didn't hit me that it was a problem until i was twiching so bad that i coulcn't fall alseep. Sleeping meds helped me sleep but i still twitched all night long. I think there is pain also. reoccuring dreams of being unable to walk b/c my legs hurt so bad lead me to think that way. The cramps are mostly in my thighs. If i lay on my back and put my foot under my butt this streches the muscle to the point of pain but the cramps cease long enough for me to find sleep. Yoga seems yo help too.

Good luck

[Diane]

I don't remember when my symptoms started. It used to only happen once in a while - not even often enough to be a problem. I never knew my sister had it until a few years ago. She said her mother-in-law, a nurse, told her it was caused by certain medications (sinus). My sister said she only noticed it when she was taking those medications. I noticed I had it on other occasions. The hardest thing about it is that it's impossible to explain. My sister and I describe it as wanting to just pull our leg/arm off and sit it in a corner until it stops. It doesn't really 'hurt,' it's just the most annoying feeling imagineable. Over the past couple of years, my symptoms have increased, and it has gone from happening every once in a blue moon, to a couple of times a month, to a few times a week, to nearly every night. Sometimes it happens more than once a night. No matter how hard I try to lie still, I can't. If I try really hard not to move, my legs actually jump on their own. It's the strangest thing. I don't take any medication for it. My husband is very sympathetic, trying his hardest to understand how it must feel. He is actually the one who first heard of restless leg syndrome. I, like so many other people on this site, felt a huge relief just knowing I wasn't crazy and there really was a condition I was suffering from. I eat way too much chocolate and probably have low iron levels. I haven't been officially diagnosed with RLS, but I know - on my own - that my symptoms are definately RLS. I've always had it in my arms and legs too. It doesn't always effect my arms & legs at the same time. My legs are the only extremeties that actually jump. The only thing that releaves my symptoms is a warm bath and/or walking around - although walking around doesn't ease the arm & hand symptoms. The most frustrating thing is when the symptoms have been relieved by a warm bath (in the middle of the night), and as soon as you crawl back into bed, it starts back up. I easily lose 1 hr. of sleep every night because of it. Sometimes the jerking wakes me up, but usually it's just the uncomfortable feeling that wakes me from a dead sleep. I find that I'm fatigued more than ever.

[Guest]

Like Diane, my husband had heard a program on RLS and came home with the *good* news "I know what is wrong with you!" Their description of a RLS individual he could identify with my *problem*! *BG*

Not that RLS is good news by no means, but it was a relief to finally know that there were others like me! This site has been so helpful and without their support and knowlege I am not certain that I would be doing as well as I am today.

As a child I remember having *growing pains* and problems being a fidgeter! It has always been a part of my life getting progressively worse with age. Beginning in my late 40s I knew there was definetly something wrong, yet there was never a diagnosis. Sleep problems became an issue affecting the quality of my daily life. My husband was truly frustrated with my medical care as he knew it was not all in my head!

So thankful that RLS is getting more coverage these days!

Hazel



Thankfully,