RLS daily duration

[Theonlypetied]

I get RLS from 2pm each day. Even with meds, I don’t always get relief but night time the RLS is replaced with PLMD, again, not always relieved by meds. How long do your symptoms last? Thanks.

[Madlegs1]

What medications are you taking?

[SueJohnson]

The symptoms will last until you are off pramipexole since as you know you are augmenting and then find something that helps. You will probably need a low dose opioid. Another one to try is dipyridamole. It has helped many people on this forum and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib... Also, as has been suggested to you, you need to have your ferritin checked as increasing it to 100 or more helps 60% of people with RLS.

[Theonlypetied]

Ok. Let me rephrase the question. My symptoms start from around 2pm each day. If I have a bad night, I can usually sleep from about 4-5am. How long do/did your symptoms last each day?

[LotteM in reply to Theonlypetied]

That sounds like 'normal' timing for un- or badly controlled RLS. When I didn't have effective medicines it started usually a bit later and I could control it somewhat by moving a lot. Also nighttime RLS in my cade lasted until early morning. Usually about 5am, sometimes as late as 6am. Mind you, I never got augmentation aa bad aa yours seem to be.

And as Sue wrote, the augmentation is the problem. An opioid will help of you can get it prescribed. And of course getting off the pramipexole. But only wean down slowly. Stopping suddenly will increase the agony further and you certainly don't want that.

[Joolsg]

Luckily, my RLS is completely controlled by 0.4mg Buprenorphine at night. So I don't get any RLS. Day or night.When I was on Ropinirole, a similar drug to Pramipexole I had RLS 24/7 & it moved to my arms, face and back.

[Birdland]

When I was augmenting on Ropinirole (a DA like pramipexole) I had RLS symptoms 25/7. Since I’ve been off of this horrible drug I have symptoms from approximately 1:00 am to 7:00 am.

[SueJohnson in reply to Birdland]

Now that you are off ropinirole - and good for you. I know that wasn't easy - are you taking anything for your RLS?

[Birdland in reply to SueJohnson]

Getting off ropinirole was the most difficult thing I have ever done. It was a 4 year process with an extra year of extreme depression from DAWS. I plan on posting soon about how I recently lifted the depression. . . . I’m not on any RLS meds except for a quarter of a methadone a few times a week when my symptoms are particularly bad. I can’t take it more often because it builds up in my system and makes me very sick. I rely on hot baths each night and avoiding all triggers. I get most of my sleep after the sun rises. It’s not ideal but I’m getting by.

[SueJohnson in reply to Birdland]

WOW - it took 4 years !!! That must have been horrible. Have you considered going on gabapentin which can completely control your symptoms?

[Birdland in reply to SueJohnson]

I was on 8 mg of ropinirole every night. When I got down to 1.5 mg I took a year and a half break from reduction. Dr B convinced me to continue the process which took me an audition year. The reason it took so long is because I have a difficult time with opioids. What an under statement! I went through numerous “poisonings” and had to stop Dr B’s regimen. He said I fell into the 3% he couldn’t help. That last 1.5 mg was much harder to kick than the first 6.5 mg. It was hell on earth. I did try gabapentin but the side effects made it impossible for me to get to a helpful dose. Dr B agreed with me that I should not continue with it. I am very sensitive to meds. I’ve been told I have a condition with my liver which makes processing meds difficult. So the “cure” becomes worse than the ailment.

[SueJohnson in reply to Birdland]

Boy was your doctor remiss in prescribing the ropinirole. 8 mg is twice the maximum dose for RLS. Have you had your ferritin checked?

[Birdland in reply to SueJohnson]

I wish I had been informed back then about augmentation. I was as clueless as the doctors. I thought my RLS was just getting worse. The neurologist I was sent to by my GP was worthless. He knew nothing about RLS and the dangers of dopamine agonists. When 8 mg wasn’t working anymore I spent a horrible night searching the internet for some info. That’s when I found Dr B whose office in So California is a short drive from me. My education on the predicament I was in started then. Yes, I keep close tabs on my ferritin and see a hematologist regularly. I get iron infusions when my ferritin gets down to 150. She lets me get up to 200. It helps but no miracle. I’m happy to report that I now have a well informed neurologist who is a movement disorder specialist. But unfortunately so much damage already done.

[SueJohnson in reply to Birdland]

Another one you could try is dipyridamole. It has helped some people on this forum and another one I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

[Birdland in reply to SueJohnson]

I may eventually try it. I’m very wary of all medications at this point. I just can’t tolerate most of them.

[SueJohnson in reply to Birdland]

OK. Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, massage including a massage gun and yoga. See - I hadn't quite given up on you like Dr. B, although I must admit, this is my last try to help.

[Birdland in reply to SueJohnson]

Thanks Sue. Yes I am aware of all these things. But I do thank you for your effort. Like so many of us I could write a book on the dos and don’ts of RLS! All the best to you.