long time sufferer, recently diagnosed

[lstasi]

After recently being diagnosed with RLS I have realized I have had this disorder all my life, since I was a child. I have always had restless nights and felt the need to shake my leg. I even notice my brothers do the same thing. The problem is, as I have gotten older the symptoms have gotten worse, much worse. I have spent many a sleepless night, even weeks due to this relentless need to move around and inability to just sit still. Being 6 months pregnant at the moment is not helping matters in the slightest. My question is this...I mostly about this disorder effecting the legs. Although I do, at times, have this feeling in my legs I feel the source of the restlessness and "out of my skin" feeling is more throughout my body. Almost like an anxiety within. I'm wondering if anyone else is experiencing these symptoms in places other than their legs.

[Calgary Cowgirl]

I appreciate fully your concern regarding anxiety levels felt. Having had RLS for over 20 years I found that it wouldn't allow me to relax, especially in the evening - so watching a movie or playing the piano or just sitting in a chair were pleasures I couldn't enjoy. I believe that when any of us are deprived of an ability to relax for long periods of time our bodies react to this - i.e., the anxiety. How do we relax - try setting the environment and treating yourself to some of your known pleasures. Things that have worked for me (and not at times) warm bath, do leg exercises in the evening just before bedwarm, raise mylegs for a minimum of 15 minutes 4 -5 times per day, wearing proper support hose with a minimum of 15 (something) of compression all the time. Not getting proper sleep starts wear on our bodies, physically and emotionally. I found I was depressed at what I thought was the RLS - when I beleive that it turned out to be depression caused my major sleep deprivation - therefore not having the energy to do much of anything. Once the doctor prescribed a strong sleep medication and I have now slept for 3 weeks I feel quite different - not depressed and my legs aren't so bad at night. I do find that my legs really act up when I start to get overtired. So overtired, legs act up, more not sleeping, more overtired - vicous circle. I have been taking a magnesium supplement at night. Not sure if it helps or not, but the additional magnesium sure helps.
Hope I've helped you somewhat!

[sardsy75]

After recently being diagnosed with RLS I have realized I have had this disorder all my life, since I was a child. I have always had restless nights and felt the need to shake my leg. I even notice my brothers do the same thing. The problem is, as I have gotten older the symptoms have gotten worse, much worse. I have spent many a sleepless night, even weeks due to this relentless need to move around and inability to just sit still. Being 6 months pregnant at the moment is not helping matters in the slightest. My question is this...I mostly about this disorder effecting the legs. Although I do, at times, have this feeling in my legs I feel the source of the restlessness and "out of my skin" feeling is more throughout my body. Almost like an anxiety within. I'm wondering if anyone else is experiencing these symptoms in places other than their legs.

Hi Istasi

It is not uncommon for RLS symptoms to appear in other parts of the body e.g. the arms & torso. When i'm in "full swing" I battle with both legs and both arms and it's the most frustrating thing I've ever experienced!!! On the worst night ever all I could do was lie on our bed, thrashing around. My poor hubby was at a complete loss as he could do nothing to help. It was about 3 hours before I could settle enough to doze off, and even then I'd had a rather scary cocktail of drugs trying to make it all go away.

Even though my legs are pretty much under control at the mo', when they do kick in, i've been noticing that I have problems with my hips and lower back. I'm still trying to figure out if its the symptoms, or pain from my reaction to the symptoms...

We are yet to try and start a family, which is something i'm not looking forward to really, as I have to go off all my drugs completely. However, if you can do it, then I can do it! Just as soon as I can talk my hubby and neuro and GP into it

Stay positive!

Nadia

[sorelegs]

Iv'e recentlty been diagnosed with RLS. It's taken almost 3 years for this diagnosis to be reached and several doctors. I've been really fortunate with my current practitioner.. he really seems to care and takes great time and trouble with his explanations.. My symptoms apparently baffled him from the off (I signed up with him in March last year) but he has researched a lot of them and having ruled out various other illness/disease process, we;ve come up with this. LOL, it's just my luck to get a diagnosis with such a crappy name!

Im 28 years old.. I'm glad that I have my diagnosis though. I've spent the last 3 years extremely fearful for my health, so much that my worries exacerbated other symptoms. I had a HIV test which came in negative (thanksfully) but my fears were that great.

I'm struggling finding any reliable sources re: treatment of RLS. My GP has started me off on ropinirole 1mg at night but that doesnt seem to be helping yet.

I have pain in both legs and often in both arms. Mostly I average 4 hours sleep per night. I work fulltime and have a child just started school..

What I want most in the world is for the pain to subside, a normal sleeping pattern and to wake up daily feeling pain free and refreshed. I'd also like to look better (lol, like I havent been dragged through a hedge backwards). Obviously the lack of sleep and worry makes for nasty complexion, poor eating habits, anxiety and sometimes I feel paranoid.

I don't know if many people read these threads but it's actually a good feeling just typing my heart out.

i would really welcome any advice about reducing symptoms, sleeping etc and would love to hear from/maintain contact with others in the same boat.

I know that this post is gloomy but I'm facing the prospect of another long night. Seriously, I'm not always this downbeat.. -)

[sardsy75]

Iv'e recentlty been diagnosed with RLS. It's taken almost 3 years for this diagnosis to be reached and several doctors. I've been really fortunate with my current practitioner.. he really seems to care and takes great time and trouble with his explanations.. My symptoms apparently baffled him from the off (I signed up with him in March last year) but he has researched a lot of them and having ruled out various other illness/disease process, we;ve come up with this. LOL, it's just my luck to get a diagnosis with such a crappy name!

Im 28 years old.. I'm glad that I have my diagnosis though. I've spent the last 3 years extremely fearful for my health, so much that my worries exacerbated other symptoms. I had a HIV test which came in negative (thanksfully) but my fears were that great.

I'm struggling finding any reliable sources re: treatment of RLS. My GP has started me off on ropinirole 1mg at night but that doesnt seem to be helping yet.

I have pain in both legs and often in both arms. Mostly I average 4 hours sleep per night. I work fulltime and have a child just started school..

What I want most in the world is for the pain to subside, a normal sleeping pattern and to wake up daily feeling pain free and refreshed. I'd also like to look better (lol, like I havent been dragged through a hedge backwards). Obviously the lack of sleep and worry makes for nasty complexion, poor eating habits, anxiety and sometimes I feel paranoid.

I don't know if many people read these threads but it's actually a good feeling just typing my heart out.

i would really welcome any advice about reducing symptoms, sleeping etc and would love to hear from/maintain contact with others in the same boat.

I know that this post is gloomy but I'm facing the prospect of another long night. Seriously, I'm not always this downbeat.. -)

Hi there

Fellow 28yo RLSer here from down under. I had undiagnosed RLS as a child, which "went away", only to reappear with a vengance in June 2003. There's nothing like getting on to one of these support lists and typing away all your worries - there are plenty of us who will see what you're going through and be able to offer support and advice.

Finding a GP who you can actually talk to and who cares about what you're going through is the first big hurdle taken care of. Now all you have to do is sort out the drugs, and believe me, being your own guinea pig ain't all that fun sometimes My GP was as scared as I was when I first rocked up to his office last year - my legs in fantastic swing! But we're working through it together.

Below are two links to RLS sites with excellent information on medications/treatments. You might want to print them out and take them to your next GP appointment.

http://www.jmjudson.com/medications.html
http://www.rlshelp.org/rlsrx.htm

I know you're not going to like hearing this, but.......don't over-do-it!! Always ensure that you put your health first. I have just learnt that the hard way and as a result had to resign from my job. I have severe RLS and until six weeks ago, I was working 10-12hr days, plus taking work home at night, plus weekend work while averaging 1-3hrs sleep at night. I ended up in hospital as a result. If you have family/friends around you, don't be afraid to ask for help and support.

Ropinirole is one of the better RLS drugs out there at the moment. It may take a while for the effects to be evident, however, if you don't feel that it is improving your symptoms at all, go back to your GP and discuss increasing the dosage (you can go up to 9mg/day with that one). Watch the side effects though!

Sleepwise, have you tried the herb Valerian? I've found it very helpful at night when I'm trying to relax enough to get some sleep. If you think you need something more, discuss the options with your GP. With a young child you need something that will let you sleep at night without being drowsy the next day. Be careful with anti-depressants as some can actually increase RLS symptoms in some patients.

A good site for suggestions on how to beat RLS at its own game is the RLS Rebel site. Jill has a myriad of ideas and suggestions which are non-drug related and quite effective http://www.rlsrebel.com

I have also found that regular massages (including my legs) and cranio-sacral therapy (working with the central nervous system) have been excellent. Keeping your mind as active as possible is also good too.

Well, i've rattled on quite enough for now. Hope you get something useful out of all of this. Feel free to vent in my direction at any time (sardsy75@yahoo.com).

Take care
Nadia

[Guest]

Thanks so much for replying. It's such a relief to learn I'm not alone.

I'm a slow learner in terms of helping myself.. lol smoke 20 ciggies a day, 8 cups of coffee sometimes work 10+ houre..

I'm actually about to make some changes. I have determined my non smoking day and I also have a friend at work (a really gorgeous/caring person) who has offered to do me massage and reika (sp).

I will be going back to my Gp in 4 weeks. I only started on ropinirole 4 weeks ago at 1/2mg this went up yetserday to 1mg. I guess I need to give it some time to see if it can start to kick in

my next step now is learning as much about rls as I can - I know knowledge is power.

The majority of my pain is in the tops of my legs.. outer thighs. Is this normal?

Thanks again for replying

[sardsy75]

Thanks so much for replying. It's such a relief to learn I'm not alone.

I'm a slow learner in terms of helping myself.. lol smoke 20 ciggies a day, 8 cups of coffee sometimes work 10+ houre..

I'm actually about to make some changes. I have determined my non smoking day and I also have a friend at work (a really gorgeous/caring person) who has offered to do me massage and reika (sp).

I will be going back to my Gp in 4 weeks. I only started on ropinirole 4 weeks ago at 1/2mg this went up yetserday to 1mg. I guess I need to give it some time to see if it can start to kick in

my next step now is learning as much about rls as I can - I know knowledge is power.

The majority of my pain is in the tops of my legs.. outer thighs. Is this normal?

Thanks again for replying

Yikes! 8 cups of coffee? One glass of Coca Cola is enough to send my legs ballistic for a week! Caffiene is 99% of the time an RLSer's worst enemy. Some people can tolerate 1-2 cups of coffee a day, but I think up to 8 might be pushing the friendship! Giving up smoking is a good thing too. Definitely take up that massage offer as the sooner you can get rid of some of that tension you've built up the better off you will be, and you will probably start to get a few more hours sleep too!

Start with this site for more information by going up to the Medical & Scientific Info section and reading the publications provided there. There are three other sites which provide detailed information on RLS as well:

http://www.wemove.org/rls.html
http://www.jmjudson.com/rls.html
http://www.rlshelp.org

Usually when you first increase your dosages it can take one-two days for it to work. Then, it will be about 5-7 days before you know if that dosage is strong enough. If it's not, then your symptoms will more than likely kick in again (pardon the pun ) and you will need to call your GP and discuss another increase. Don't do anything drug-wise without your GP's "OK" though.

Take care
Nadia

[Guest]

Hi all, I'm a 24 yr old with RLS for as long as I can remember. I haven't had a full nights seelp in years. I used to wonder why all my friends and roommates could stay up for all hours of the night studying and partying and I could barely make it through a few classes without needing a few hour nap. I've seen GPs and rheumatologists for joint pain but no one suggested until this year that maybe all my pain is due to lack of sleep! I called a sleep specialist and took the sleep test and lo and behold I've been waking up every 15 minutes due to my leg jerking. They say that's mild but I think it's incredible that I'm still alive! right now I'm in a study for a new drug Sumanirole. So far I have yet to see results and I think I mught opt out of the study to try something different. I hope something works. I'd like to be able to stay up for a whole day for once.

[Monica]

I have never been diagnosed with rls, but I had symptoms for a long time. It become unbearable when I was pregnant. My doctor, after a series of tests, determined that I had magesium deficiency. I have been taking magnesium ever since and it helps a lot. I do not have symptoms anymore (unless I forget to take the magesium pills). Did anyone had similar experience?

[miamoss]

Posted: Wed Apr 14, 2004 3:54 pm Post subject: I FOUND A CURE FOR RLS

--------------------------------------------------------------------------------


I am 32 years old and suffered from RLS all of my life. This disorder is so bad that suicide has crossed my mind many, many times. But one day I started taking a drug for another condition and I noticed that my RLS completely went away. The drug is called Neurontin, it is used for many things, but mainly epilepsy (which i do not have). For me, Neurontin has NO SIDE EFFECTS WHATSOEVER, it is great. What a relief. I just take 3 around dinner time (before the onsite of the RLS) and then I sleep fine, and I can watch tV now and go to the movies and fly on airplanes. Wow, I am so happy that "by chance" I found permanent relief from RLS. Now, I am no doctor, but my doctor was happy that we discovered this and supports it all the way. Please talk to your doctors and try it, I promise it works. Some may need to take more Neurontin or less, I take 300ml a day. Most important though, you should not wait until the RLS is starting to kick in before taking Neurontin, take it before the onset, if you wait too long, it will take twice as long to work. So I just take it early, before dark, that way I am covered, and I never even feel the RLS anymore, ever.
I hope this helps. Now I can live.
Maria Moss
Suffolk, VA.
mariamoss@charter.net