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Restless Legs Syndrome

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Hi I'm new to this forum

Gcoochy profile image
7 Replies

Hi I'm new to this forum, I've suffered from RLS for many years but after reading some of the stories on this site I think mine is mild, it affect me every night at about 8.15 and stops when I get in a cool bed. It doesn't really stop me sleeping but if I do wake up it can start sometimes.

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Gcoochy profile image
Gcoochy
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7 Replies
nightdancer profile image
nightdancer

Welcome! I take it you are not bad enough yet to be takin any meds? RLS is progressive, so that is something to think about, and you may want to start researching meds now to be prepared. I am in the US, but ave many UK friends with RLS. the best web site for the most information is rlshelp.org (in my opinion) and you can email the doctor any time. He is an RLS expert that I and thousands of others have been dealing wth since 1995 or before. The treatment page would be something to look at now if you are on ANY meds for anything. there are many meds that can make RLS worse, even over the counter stuff, so beware. any cold or allergy meds that diphenhydramine in them need to be avoided at all costs, for one example. Dr. Buchfuhrer is an advisor for the RLS Foundation, and has been helping ne with my groups since 1996, whenever I need an answer to something to be sure it is abslutely correct. He also is on the International RLS Study Group, and lots of other things. If there was one RLS doctor in the world, I would want it to be him. ;) If RLS starts waking you up too much in the middle fo the night, then that means kt is starting to "ramp up". another good idea is to keep a sleep/symptom diary, so you can show a doctor, when you need to, what has been going on and how the RLS has progressed (when it decides to) Welcome again to our group. Lots of knowledge here and support!

RobEd221 profile image
RobEd221 in reply to nightdancer

I can only reiterate nightdancer's advice. I had RLS for about a year and a half before any doctor took it seriously and then another two years before anyone suggested medication. I take a low dose of Ropinirole and it was heaven when I first took it and slept. It's not so effective now but the Dr and I agreed for me to take as and when needed. I now get the symptoms whenever I relax enough at any time of day. I worked at one time in an electrical manufacturing plant and the spasm in my leg is the same as a full electric shock every 17 - 21 seconds. - It makes the kids laugh anyway. I'm 56 and a director / owner / registered manager / social worker of a foster care agency,and was a headteacher.

Good advise from nightdancer. I hope its a long time before you need to start down the medication route, if you havent got to that stage. Welcome to the forum, lots of helpful people on here.

Rubylane25 profile image
Rubylane25

Welcome to the site. I have found it very helpful. You are fortunate you have a mild case. However be watchful

because as mys age progressed so did my RLS. You are right that a lot of us may have worse cases. Most of us once it starts we can't sleep or in my particular case even sit. I just have to keep moving and if you are up and moving you cannot sleep. I hope your RLS disappears but if not then I hope you continue to have RLS mildly and never have to go through some of the situations on here. How are you when travelling for long distances?

cicek profile image
cicek

Welcome to the forum. I agree with Nightdancer. RLS is progressive. I used to get exactly the same symptoms as you but mine started about 7.00 p.m. until bedtime. I spent every night walking around the house because I couldn't even sit down. Once it starts affecting your sleep is the time go go onto meds. Unfortunately this syndrome gets worse with age and never gets any better. There is no cure but please take Nightdancer's advice and do your research now so that when the time comes you have all the information you need before visiting your doctor. Long may your symptoms continue to be mild and that you are able to cope. You will always find help and advice on this forum so please stick with it. Good luck.

Busta1 profile image
Busta1

You should still get help for it as there's a risk it might get worse. Mine is only at night, my feet burn like mad, it doesnt wake me up but if i wake in the night it stops me getting back to sleep. The docs have just started me on roprinole 1.5mg.x

AmaraLeigh profile image
AmaraLeigh

This trick may work for you having mild RLS. I have RLS that is induced my certain medications that I take. I don't get it every night but when I do I cannot sleep for hours. I was going crazy and getting desperate the other night to have my legs calm down so I lay my legs on a full body massaging pad I have and the vibrations on my leg helped enough to allow me some relief and sleep.

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