Confused

[Thea2014]

I’m a 70year old male can anyone tell me if they suffer from rls during the day as well as night because it starts from anytime during the day it even happens if I’m standing I’m beginning to to think there is something more than rls waiting for test results it’s relentless

[Madlegs1]

Sorry to hear about your condition!What medications are you on and what are you being tested for?

[grassgree]

It would be good to know more. What kind of tests did your doctor order? Yes, symptoms can occur during the day, especially after a period of resting. If you're taking a dopamine agonist, symptoms can appear a few hours before you usually take the meds.

[Joolsg]

You mention in your bio that you have kidney issues. That can definitely cause constant RLS so push for more tests & results. Ask for a full panel blood test as well to show serum ferritin, serum iron etc as well.I presume you're not currently taking any medication for the RLS?

[Nikos64]

I sometimes suffer from RLS during the day if I didn’t get enough sleep the night before. It’s very rare however. There are serious cases though where it’s round the clock from what I’ve read. Prior to being treated, I suffered RLS around the clock but it was the most intense in the evening and bedtime.

[vikkkk]

I also have daytime RLS symptoms, they start about one hour after I wake up. I can't sit down to even eat my lunch.

[Jules1953 in reply to vikkkk]

Hello , can you please give us some more information about what medications you are currently taking both for RLS and other conditions. If you are taking a dopamine agonist medication you are probably experiencing what is called augmentation. Kind regards Julie from Western Australia

[Busiris]

I'm 75 and I've had RLS for over 20 years now. The leg(s) can kick in at any time, day or night. I kept a log for a few weeks and some days had 5 episodes - up to 5 hours long. I take slow release co-cardomal but no guarantee it will help. It's SO depressing and debilitating!

[SueJohnson in reply to Busiris]

Have you tried gabapentin?

[CookiePooki in reply to Busiris]

It's a curse since there is no cure

[DicCarlson]

I had Severe RLS with plenty of daytime symptoms. I thought I had Parkinson's. Check the iron connection. There is no real test for RLS - just that uncontrollable urge to move!

[pmmargo]

I'm 61 and have RLS too. My movement specialist (Yaghi at Georgetown) is trying gabapentin starting at 100mg before bedtime and titrate up to 300mg. There is a recent study from Hopkins suggesting our problem is excess glutamate (one of the excitory neurotransmitters). The inhibitory transmitter which corresponds to it is GABA. But to get into the brain one may use gabapentin. It is too early to say how well it is working. I noticed that cold water on the legs also is very helpful and gives me an opportunity to sleep. Best Wishes, Paul

Here is the reference:

hopkinsmedicine.org/neurolo...

I believe the order to proceed is to

1. check for iron deficiency

2. try gabapentin

3. try dopamine agonists if you can tolerate them. Mirapex is very dangerous and sometimes

miraculous.

4 try cabidopa/levadopa or more of it if you are already on it.

(recently steps 2 and 3 got reversed in the RLS algorithm for neurologist guidance)

[SueJohnson in reply to pmmargo]

carbidopa/levadopa (Rytary, Duopa, Sinemet) is not mentioned in that article because they are dopamine agonists. Dopamine Agonists lean to augmentation in up to 70% of people and should not be started. The better order is 1) check ferritin 2) gabapentin/pregabalin 3) a new one dipridamole 4 ) opioids

[pmmargo in reply to SueJohnson]

I agree with what you wrote. thanks for the correction.

[Grandma132]

I am 75 and have been taking Ropinerol at night abut half hour before bed. I have found recently that my RLS begins when sitting in a comfortable chair watching television. There are times when I simply cannot sit but need to stand and/or walk. It is especially bothersome when I am tired. I have been on Ropinerol for about three years. At first 0.5mg then 1.0mg now 1.5mg. If my RLS is especially bothersome when trying to sleep, I will take another 0.5mg but that is rare.

[SueJohnson in reply to Grandma132]

It sounds like you are suffering from augmentation.

[Grandma132 in reply to SueJohnson]

Thank you. That is possible but it only happens occasionally and only when I’m stressed or extremely tired. I am maintaining my current level and I hope to continue at this dosage.

[Dougg]

Yes. My RLS started slowly at night, and then began to creep into my life earlier and earlier in the day until it was essentially round-the-clock. It's been that way for about six years now. Granted, it's worse at night, but still requires medication during the daytime as well or I'm pretty miserable. Good luck on your journey. You'll find many helpful resources and empathetic people here.

[Elaniemarie]

Yes I suffer from RLS during the day and night, am 69yrs old, and have suffered since childhood! I have been on Requip since 2004 after being referred to a neurologist. I have tried coming off the drug and trying something else because of the side effects, but am still on Requip (better the devil you know) It's a question of management really, at least I do get some relief if the timing is right, other times it is relentless and drives me to distraction. I have this on top of M.E, and severe depression. I really don't think my G.P understands the situation; how can he unless he suffers from it! Sorry you are suffering too!

[SueJohnson in reply to Elaniemarie]

Are you taking anything for your depression? Have you thought about getting off requip and switching to gabapentin?

[CookiePooki]

Yes it's throughout the day whenever it feels like it. It's a curse I believe

[Anguished]

Yes I have it most of day and all night. And yes relentless!!

[Sewknit]

I,too, have RLS symptoms during the day on occasion. My doc tells me that is normal in some cases. That doesn’ t make it easier to handle, however. Are you on any medication?

[FLfish]

I have RLS constantly. Keeping busy/active helps me because I don't constantly think about it. I often hate dinnertime because afterward--when I sit to watch some TV w/hubby--I notice it terribly. Have started gabapentin (at 300mg now); it takes the edge off. So glad I found this forum. Good luck to you.