I guess taking the "L" out of "RLS"! I can think back to when I was a child this happening once every few years. As an adult it grew more frequent. The last year, it's been once every few months. I'm up to every night now over the last week.

This is what happens: While I'm sleeping I'm very restless. It wakes me up. I feel this creepy crawly feeling starting in my vaginal area (very internal) going all the way up to my neck. It feels weird in my upper arms, too. It's not pain at all. Almost like an internal tickle that is driving me crazy. I can't lay down, as soon as I try to lay back down, it starts furiously and I almost feeling like I'm seizing I'm moving so much to get rid of the creepiness. If I get up and walk around, it helps. The minute I lay back down, it's back. If I spend too much time laying down watching TV, I can feel it comming on. I've been on Norco for my back pain lately and I'm finding if I hurry up and get up and take 1 before it gets so bad I'm moving uncontrollably, I can fall asleep as soon as it kicks in. It's horrible.

I've read symptoms of RLS, but it fits perfectly, but I feel this nowhere in my legs. I've explained this to a few doctors, they all look at me like I'm crazy. I can't stand this. I do have Sleep Apnea, but don't see my sleep doctor very often. Before I make an appointment with him, I want to see if anyone's heard or dealt with this. Thanks everyone.

Renee

I am having this problem as we speak right now. I would call my Restless Arm Syndrome because it's more or less in my left arm. It's also sort of in my chest. All I know is it's driving me insane and I can't take it.

Lord Jesus guide me here to be brief and honest. Thank you my merciful God, Amen! Listen please. Your post sets off all kinds of alarm bells, based on my ongoing personal experience of symtoms you describe. I always receive relief nightly for sleep. Believe this, I KNOW I am being attacked by demon spirits, that ALWAYS STOP and LEAVE at my quiet command in faith believing saying "In Jesus name, devil (meaning any spirit serving Satan) go out to the pit." That ALWAYS go. Some return (which is scripual), but I never fail to take authority over the situation "in Jesus name." Don't worry if nothing "seems" to happen. The power in His name causes havok in the unseen spirit realm. If this ever failed me, I wouldn't share this. Be calm and persistant in this. I don't know about the safety (spiritually) of these meds. I defer to my more experienced deliverance ministry associates at "bustadevil.com". There you can be anon. and post topics related to symtoms, your ancestors or your involvment in the occult (like psychics and fortune tellers) for addl. info that is annointed and apporinted by God. God wants you saved, healed, and delivered more than you can know. I'm avail. at yeslord498@hotmail.com also (though I am male) and willing to share spiritual guideance any time. I'm sure your on the verge of something wonderful!

I have had RLS for many years. It mostly effects my legs, but on some occasions it will travel to my arms. I have also experienced vibrations in my spine along with the rest of these symptoms. When I mentioned these symptoms to my doctor, he knew right away what it was. I have been taking sinemet for quite some time with great sucess. The dose has been increased more than it was when I first started, but at least I can get some sleep.

what is restless leg syndrome?

What is Restless Leg Syndrome? Well, I have it and I can tell you what it feeks like......a million maggots crawling around inside your legs and you can't do anything about it except move when you move they don't. But then you get so darn tired and then you start to go crazy

Originally posted by NaeNae:

This is what happens: While I'm sleeping I'm very restless. It wakes me up. I feel this creepy crawly feeling starting in my vaginal area (very internal) going all the way up to my neck. It feels weird in my upper arms, too. It's not pain at all. Almost like an internal tickle that is driving me crazy. I can't lay down, as soon as I try to lay back down, it starts furiously and I almost feeling like I'm seizing I'm moving so much to get rid of the creepiness. If I get up and walk around, it helps. The minute I lay back down, it's back. If I spend too much time laying down watching TV, I can feel it comming on. I've been on Norco for my back pain lately and I'm finding if I hurry up and get up and take 1 before it gets so bad I'm moving uncontrollably, I can fall asleep as soon as it kicks in. It's horrible.
Renee[/B]

I was just able to find your post and wanted to let you know that I experience alot of the same symptoms that you do, however, I do have the sensations of needing to stretch my legs as well. I know exactly what you're talking about with regard to the vaginal sensations. They are very unnerving. I just started on a multivitamin after reading the other posts. I don't have enough history to know whether it's going to do any good but I will let you know. Have you had any success with anything that alleviates the symptoms?
Thanks and hope you're doing better.
June

I think it's called Restless LEG Syndrome because that's the most common, or most obvious area. Most people I've spoken with have it in other areas of the body. It can show up anywhere - after all, it's a neurological condition, and neuro condititions can effect anything and everything.

I have it in my neck, shoulders, and back mostly. I also get weird internal feelings, but for me, they're in my stomach and chest.

Regardless of where you experience it, the treatment options are the same. But what works for one may not work for another. The best place to start is to make sure you're not iron deficient by checking ferratin AND transferratin levels (ferrtin should be above 50).

Some people find relief from taking calcium and magnesium and by avoiding coffee. Meds that act as dopamine-agonists may help (usually drugs for Parkinson's disease) - meds that act as dopamine-antagonists will make symptoms WORSE (most antidepressants and OTC cold medicines are in this category). And other people will have more ideas that might be worth trying. For me, the biggest thing is that I have to avoid getting overly tired. If I don't go to bed when I first get tired, or if I stay up later than usual, my symptoms get bad enough that I can't fall asleep at all, then it sparks off a viscious cycle or being overly tired / unable to sleep.

Good luck,

~ Z

Boy! Do I understand the "all over wiggles" syndrome. I've had RLS for eons, but went through a spell for several months were I would start with my torso curling up and my arms moving. Get up and wander around, and as soon as I went back to bed it started again. I did a lot of house cleaning during that time period - washed windows, mopped the floor, swept the sidewalks (fortunately, we live in the country, so I could be out in my jammies at 1 AM and nobody knew but the raccoons!) - well, you get the picture.
Anyway, I did find that I could get a couple hours sleep - of a sort - leaning back in the recliner. Hubby would tuck the blankets around my legs, and prop me up with pillows, and I'd actually be able to get some rest. About 2 or 3 in the morning, the spasms woud wear off, and I'd flop into bed and sleep until 8 or 9. One of the advantages of being retired, as I know that schedule won't work for eveyone.

Ask your Dr for Klonopin I ve tried everything cut out caffeine and one before bed youll sleep like a baby, a very rested one...It has changed mylife

My PLMD affects my legs, arms and neck and perhaps my throat.

I used to have restless legs occasionally, but then it became every night for awhile. At the time, I also had hayfever, and was taking antihistamines. When I quit taking the antihistamines, the restless legs went away.

I also experienced this when I was weaning off narcotics for pain.

But now I still have this problem all over sometimes, it seems to happen along with anxiety, and feeling like I can't get enough breath. It is always in the evening, or when I climb in bed.

I recently learned this might be a symptom of fibromyalia (check out this board if you don't know what this is), which my PCP thinks I might have. He has referred me to a specialist to diagnose.

Well, that's my discoveries for this topic. Nice to know I'm not alone!

I'm so pleased at the responses I've gotten. Until I discovered this on my own, I thought I was alone. I had no idea what it was, no idea how to describe it, and thought I must have been wired wrong!

Junebug-if you're still reading, how are your multi-vitamins working?

I started on Prozac about a month ago (switched from Effexor) and it crept up with the Prozac. I remember my doctor trying me on Prozac about a year ago and the same thing happening. Now that some of the initial side effects are wearing off from Prozac, I'm not bothered as much with RLS. Now watch it happen tonight since I said that!

Funny how someone mentioned Fibrmyalgia. I'm undergoing Physical Therapy for body pain that came on earlier this year unexplained, and Fibro is one of the things on our mind with diagnosing this.

And someone mentioned weaning off the pain medicine, how long did you have the trouble with RLS and weaning and how bad was it? I ask because I take Norco for my pain in my back and all over. I know as soon as it's time for my next dose because I can almost feel the RLS start to come on. And when RLS does wake up, I'll take 1 Norco, it helps so much, gets rid of it and helps me go back to sleep.

Thanks everyone for your responses!

I've discovered that taking Benadryl makes the restless leg syndrome (and arms) MUCH worse.

I've discovered that taking Benadryl makes the restless leg syndrome (and arms) MUCH worse.

Hi VeryOldLady,

I get a kick out of the fact that your username is VeryOldLady, but right under your username, it says you are a junior member.

Anyway, the reason why Benadryl worsens your RLS is becuase it is a dopamine antagonist. Medications that are dopamine agonists help RLS, those that are antagonists worsen RLS. The former group includes many anti-Parkinson's medications, and the latter group includes a lot of OTC cold remedies, anti-nausea meds, anti-depresants, and anti-anxiety meds.

RLS is likely due to dopaminergenic disregualtion. See Neuropathological examination suggests Impaired brain iron acquisition in restless legs syndrome written by J.R. Connor (lead author) and published in Neurology 2003 volume 61 page 61 for more technical info on the cause of RLS / PLMD.

I think it's a shame that most doctors don't know that the cause of RLS has likely been determined, so I try to let people know about Dr. Connors research. Hi website is http://fred.hmc.psu.edu/ds/retrieve/fred/investigator/jconnor and you'll find links to many of his publications there.

~ Z

Thanks, Zazzaz! I hadn't even noticed the Junior under my name. That's funny. Old is relative, anyway. [grin]

I bokmarked your link and I will keep an open mind while reading it. But, I had never had any problems with this (except one night when I was pregnant) until I fell into a huge hole and injured my neck and back. The pain never left. It got worse and worse and then it began to get a little better and then it leveled off. But, with that pain came RLS, which was SO annoying because moving made the pain worse, but I couldn't lie still. I thought that the restlessness was from not being able to move...like when you laugh hardest at church where you know you're not supposed to. But it never went away.

Recently, a doctor began prescribing pain meds to ease the pain (I was taking several OTC pain relievers at a time several times a day before he prescribed the medicine). The cool thing was it took away the RLS. Hey! As well as this has calmed my movements, I honestly believe this medicine has helped me more in the RLS area than in the pain area. In other words, the restlessness was worst than the pain itself.

The restlessness isn't always in my arms, but it does effect the arms at its worst. It was always in my legs before I began taking the medicine. Last year, for instance, after a 24 hour bus ride one way, I arrived at my destination with my legs and arms so bad off I couldn't stay still for a second. I wanted to ball up in a ball with someone tying up a blanket around me and tying it as tight as they could tie it to squeeze me. I never had this as a kid.

Recently I saw a girl in a medical show (reality tv) who had scleria (sp?). They described it as "dancing disease' and thought it was caused by either lupis or rhumatic fever (turned out to be RF). but, I declare, that girl looked like I felt when I had restless leg/arms. She wasn't jerking. She just had to move. And it wasn't a constant moving. She just couldn't stay still. Strangely, since she was young, she didn't complain about it. Her parents noticed it and contacted her pediatrician.