New to Board!

[julie]

Hello to all I was just recently diagnosed with RLS. After doing research and reading the many posts here, I've come to realize that I have had it for years. Maybe since I was a child. I'm so glad that I found this board. It's nice to find others that know exactly what I am going through. My symptoms have been....an overall annoying itchy, crawling sensation through out my whole body...numbness and prickly feeling in one or both arms.....numbness, prickly, crawling in legs. Sometimes my legs have a mind of their own and twitch or jump. I am currently taking Sinemet Cr. It seems to work at night and does nothing for me during the day. During the day, what works? I can't stand feeling like something is crawling on me all of the time! I look forward to the support of this group and offering it as much as I am able.

[Heronak]

Welcome Julie, from someone also fairly new to this forum. I can't help you with your question about daytime RLS (rarely have symptoms during the day), but I am interested in your Sinemet experience/side effects (I just posted a note about it in the Pharmacuetical forum).

Best of luck finding solutions,

Heron

[Rubyslipper]

Julie, this is a great board with caring people. We are all glad to tell about our successes and failures with meds and doctors. I take Mirapex and Neurontin. I have had RLS for years but recently it has taken a definite turn for the worse. I don't sleep at night and have started having RLS symptoms during the day. My doctor is great and has increased the Neurontin but so far, it hasn't helped. So if I find something that gives me relief, I'll let you know. I have completely cut out caffeine, chocolate and alcohol but so far, no relief. Please take care of yourself and keep us posted on your journey.

Toto, I don't think we're in Kansas anymore!

[julie]

Thank you Heron and Ruby for the welcome . I just started taking the Sinemet a few days ago. The first morning after taking it, I woke up feeling like I had a bad hangover . I will get a headache and take advil or motrin for it. It does the job. But, that is the only side affect that I have experienced thus far. So far, so good. These side affects, I guess, are supposed to go away after the body gets used to it. My doc told me that if this doesn't work, he will ad something else to it. Since there isn't much that is known about RLS, he said that through the years we will work together on therapy and do what we can.

I hope that you find some relief as well. Together we will all get through this.
~Julie

[sardsy75]

Hi Julie

Welcome to the group

I have Severe RLS and as such get very few moments to myself without any symptoms of some sort....i.e. they go day and night.

During the day basically I try not to think about my legs, as much
as they might want my attention (they usually kick in by 10am). I
try to keep moving and stay as busy as possible, but without
overdoing it (you must get to know the limitations of your system or you will create more problems for yourself). Basic household chores like wasking, doing the dishes, ironing, etc, slow-paced "window shopping" at one of the shopping centres, doing some baking, or just out hosing the garden are good ways to keep you occupied.

Until very recently I was on 250/25mg levodopa/carbidopa (Sinemet) twice a day. However, because I had been switched straight to Sinemet from Madopar (levodopa/benseraside), I have just been through some pretty horrible augmentation experiences.

If you have mild RLS, then Sinemet is a good place to start though. Your doctor may be interested in reading the medical bulletin put out by the Foundation ( http://www.rls.org/literature/bulletin.html ).

A couple of good medication sites are:
http://www.rlshelp.org/rlsx.htm
http://www.jmjudson.com/Medications.html

Ruby is right....caffeine (all forms including chocolate ), alcohol, nicotine, milk-based products (icecream, thickshakes - but not for everyone) and definitely STRESS are all things to stay away from.

Take care of you and keep us posted.

Nadia

[jBo]

Hi all. I'm browsing here on my wife's behalf. She's been struggling with this since childhood. As with some others on this forum, hers involves pain - sometimes intense. Her RLS is always below the knees, settling from the upper ankle on down. Hot baths help sometimes, other times not. She keeps a bottle of painkillers beside the bed, and it usually gets opened between 12 and 1am. We told our physician of her condition hoping he could prescribe something, but he insists that if there's pain involved, it's not RLS. She has all the classic symtoms discussed here - there's no doubt in my mind what it is.

She takes Tylenol to take the edge off, but it really doesn't help. She's had good success with Codeine/Tylenol3 and Darvocet, but doc won't prescribe it for RLS. (So much for my migraine meds ) Biofreeze seemed to lessen her symptoms temporarily. She took quinine as a child until it was no longer available OTC.

We need to find a doctor who takes this seriously so we can get a handle on it.

[becattx]

Welcome Julie, hello to all.
jBo, i am living proof that RLS can be painful. I'm a lifer RLS, as are many in my family. My grandmother and I have extreme pain. I've been in an attack now since Feb.. Have slept in about 10 days now, unless i pass out. If your wife had growning pains as a child, likely she'll have Adult RLS. I've been taking Mirapex, but it's effects are having a lessen effect the longer I take it. Not sure if others would agree, but it is my opinion that RLS takes on many forms. I believe that it's a matter of finding the right "cocktail" to treat and make sure that quality of life is addressed.
Let your wife know that she is always welcome here, as you are as well. This effects the ones we love every bit as much as it effects us. This is a great place to educated yourself. Educated your Doctor as well.
Good luck and God Bless.

[jumpyowl]

Welcome Julie, my esteemed fellow sufferers already helped you so I am primarily commenting on jBo.

Your wife's doctor is woefully behind the times. A number of years ago this was the prevailing opinion, RLS has no pain. This view is no longer accepted. Sensations are sensed by nerves and they come in all types and all levels why would pain be excluded when something goes wrong?

One thing you can try is to go to the Medical Bulletin on this Forum and either print it out or ask them to send it to her doctor. If you print it out you can underline the part where they state that about 50 % of RLS patients have pain! Not treating it amounts to torture.

It was not that long ago when doctors were not treating pain. They were treating diseases and assumed that when the patient got well the the pain would be gone. The other corollary to this attitude that still exists today is when they cannot find anything wrong (e.g. fibromyalgia, RLS) then they do not believe there is pain, except pehaps in the patient's mind. So they get sent to psychiatrists and get prescribed antidepressants which can make the pain or symptoms worse.

Another bellyache of mine is that when one medication does not work (Julie, are you listening?) or have bad side effect doctors do not discontinue that but prescribe another one, in addition to the useless one often just for the side effect. If anyone with a rational mind thinks about this, it is really idiotic. Of course if you consider that medical doctors do not learn much pharmacology in medical school and all they know about drugs they learn from from drug sales reps, perhaps it is not so surprising.

[julie]

Thank you all so much for your response. jBo, It is definitely time to seek another doc. Although, not all sufferers of RLS have pain, some do. It's unfortunate that your doc seems to have totally blown this off. I was very lucky to have been able to walk into my doc office. When the nurse asked me the "general questions", as they always do, she mentioned RLS right away. After speaking to my GP, he new right away as well. When speaking to me, he would start rambling a little, analyzing out loud. That proved to me that he wanted to know more and has been doing his research. I can't think of an easy way for you to find the right doc. I wish that I could. But, don't give up.

When I walked out of my doc office, I remember thinking...."Oh great.. ...just great. I'm going to be a ginny pig. " Then I had to remember that I am still in control of whether or not I want to take any meds, how much I learn about RLS and so on.

I'm happy that you found this forum of support. Sorry that you and your wife had to seek support under the circumstances. Please keep us posted.