I have suffered with RLS most of my adult life. It was in our family long before it had a medical diagnosis or a name. Our name got it was “ nervous legs”. My mother had it, I had it and now my two sisters have it. Occasionally my son and daughter also have it. It sounds genetic but actually it is not; just familial. In the early stages going y to bed was the answer. There has come a time now that going to bed only makes it worse. The uncontrollable need to move legs, the weird sensations like tingling burning and now pain find no relief. After 40 plus years and only progression of RLS symptoms, my Dr started me on Requip which did nothing for me. Then I tried Gabapentin which caused breathing issues so that was stopped. Now I take Pramipexole 0.5 mgm two at bedtime. I take it sometimes earlier and sometimes only one at a time. I also have noticed it occurs in my right arm but it does help somewhat. But the pain that accompanies it is getting worse. Sometimes I cannot ride in the car for over 30 minutes. I cannot sit in a movie theater or a meeting or church. I must be able to get up and walk around or stand up to listen. During these times, it is more than RLS. It also involves pain. Does anyone else suffer with pain in legs along with the other symptoms?? If so, what do you do to tres it? I have done hot baths,walking, stretching, heating pad, ice packs, deep heat analgesic cream, Tylenol, Advil and a small amount of Lortab. The opiate is the only thing that eliminates the pain and let’s me sleep. Anyone else have this problem?
RLS with pain: I have suffered with RLS... - Restless Legs Syn...
RLS with pain
I find taking magnesium helps I am on requip but it doesn’t always work . I too have tried everything, my doctor won’t give me opiates for the pain , doctors seem to know little about this condition I feel for you and your family it is horrible ☹️
I take Magnesium. I have no idea what’s going on. But, I do know my body and feel something is not right. Plan to discuss all issues with primary doctor next month.
Thank you for your response.
I have terrible pain with RLS - when my legs/body is at it it feels like I am running a marathon and all my muscles ache, exhausting me.
The next day my legs are sore as it feels like I ran a marathon the day before!
Thankfully I get Targinact which is an opiate that is licensed to treat RLS in the UK, it has the added bonus of taking care of the pain in my knees and back. Two birds, I stone 
Hi.
I'm not sure why you say RLS is NOT genetic, but it is familial.
Some particular genes associated with RLS have been discovered. Additionally, if a conditions does run in families (familial) i.e. passes from parents to children and there is a correlation between near relatives and less between more distant relatives, this demonstrates it's genetic.
Knowing something is genetic at least helps predict if it will occur in subsequent generations, helps with diagnosis and help prepare people for it.
I'm not intending to criticise you or pull you up in this, I think it is important to know idiopathic RLS IS genetic.
Also, again, no criticism but you appear to be taking 1 mg of pramipexole a day, i.e. two times 0.5mg.
This is a massive dose of pramipexole, above the official maximum recommended dose and far above what some RLS experts recommend.
Pramipexole is the worst of all the dopamine agonists for causing augmentation and the higher the dose you take, the more likely you are to suffer augmentation.
From what you describe, it seems likely that you have already started to suffer augmentation, which is where, instead of relieving RLS, the drug makes it worse and the more you increase the dose, the worse the symptoms become.
It might be a very good idea for you to read up on augmentation and consider taking steps to treat it. Unfortunately this means reducing and possibly stopping the pramipexole which on such a large dose, is going to be very difficult.
It may be that you are not excperiencing augmentation at the moment, but sorry to say, it's almost inevitable if you carry on.
Augmentation can be avoided so it might help others in your family to find out about this before they succumb to using dopamine agonists such as pramipexole.
Minerva,
Thank you for your response. I am studying your comments to gain more understanding and obtain the most current information. You see, I have been so tuned to taking care of my chronically il husband with multiple conditions, that I have put myself on the back burner!
I am a very good nurse......... to everyone but myself. It is very difficult for me to put myself first, but clearly it is time as I cannot continue like this.
I agree with you about augmentation. I also agree that my dosage is high and in the upper limits even though prescribed by a highly recommended internist.
The genetic component of RLS is new to me which shows how far behind I am in my own conditions. Apparently it is actually both familial and genetic with 50-65% of those tested were found to have the RLS gene. It makes perfect sense in my family.
Thank you for taking the time to inform me. I need to take care of ME first!
I know this might sound like sharing the obvious, but hearing that you’re so busy taking care of others makes me wonder if you’re like me. I have to make it a point to drink water, lots of water. I don’t know why it’s so hard to remember to do so and I find that when my symptoms increase I haven’t been drinking enough H2O. If I don’t pay attention then my arms start getting restless and cramping too! It won’t take rls away but it can ease some symptoms.
Hope you find relief soon ❤️.
Thank you SueRytt. I do NOT drink enough water either! First, I don’t get thirsty and second it is not my drink of choice. BUT, I must remember to do so!Thank you!
RN4ever, I am almost shocked by your post! You described my life with RLS completely! Here in the states it's almost impossible to receive pain medication for RLS. For the longest I was labeled a pain med seeker in my mind anyways that's how I felt. I was told it's all in my head, there's nothing physically wrong with me. I honestly got suicidal at one point. I know pramipexole is not the drug of choice. But I too take not only 2mg but I also take 1.5 mg of the extended release along with celexa. It has helped eminently with my rls. I've been taking it for about 3 yrs now.
I tried Requip with no results. The Gabapentin caused shortness of breath. Dr insisted I stop and try the Pramipexole. My doctor offered an antidepressant but I declined. I can tell that RLS is definitely getting worse and gives me many restless nights.
Thank you for your response.
You sound just like I used to. I having been using Gabapentin 350 for over a year now and get a good nights sleep with no pain. When I first started using it I did notice a shortness of breath, but than soon stopped being a problem. I take 2 Gabapentin 350 about an hour before I want to sleep. I lay in bed reading until I become sleepy. I no longer have pain or restless legs. I also soak in epsom salts if for some reason my legs do bother me a bit. Especially if I've been in the car for a long period. It did take a while for my body to adjust to the Gabapentin, but it has worked very well for me. Another thing....I started walking in place for half an hour every morning, and even tho that also took some time getting used to, that has been very helpful. Not sure if any of this has been helpful to you, but I hope it did.
Did you augment on any DAs before ?
No. I have not taken any other RLS drug long enough to have that effect. Augmentation on the Mirapex could be my problem. Will discuss with Dr next month.
Thank you for your response.
Hi, I know exactly how you feel having rls since a child and it was also causing me pain in my legs. Sometimes it felt like I was plugged into an electric socket.
After augmenting on ropinarol I was put on pramepexole but my symptoms were spread through the day. My lovely doctor then put me on pepexous, a slow releasing form of pramepexole and Gabapentin. This has given me so much relief I feel like a different person. The pepexous is 1 tablet twice daily, twelve hours apart.
Good luck
Thank you for sharing your experience. I was not aware of slow release Mirapex. I do have episodes now other than in the evening. I also have symptoms in my right arm.
Hi RN4
I suffered from Augmentation" or Rebound with a few of the medications, it sounds like this is what you have. I have been on Sifrol the longest & although i think i get a bit of Augmentation if i take it in the early evening when i am still moving around it wears off by the time i sit down.
I used to suffer more when i go to bed but now it's worse sitting down at night. I also now have it in my arms sometimes but the Norspan patch i also use helps with that. I have found that you need a cocktail of medications to find what combination works for you.
Good luck
I am on slow release Sifrol but i had to lower the dose as i was like a zombie during the day
Over the years as my RLS gets worse I get all over body ache like the flu times 10. It would go away after sleeping even just for a couple of hours. The ache started as a rare thing maybe once a month that would happen in the evening. Eventually it became almost all the time. Opiates are the only thing that helped me with my ache and latter the horrible insomnia that I developed.
Yes I can identify with all you have described. I have had RLS for 49 yrs. I am now 67yrs.
I have found after taking Pramipexole for many years, I now suffer with augmentation.
Well that is until I went onto Buprenorphine sublingual tablets
In small microgram dosage.
It is now 2 weeks ago and I have slept through the entire night.
I am still slowly wearing off my Pramipexole and Gabapentin medications while introducing the Buprenorphine.
Fortunately I had started reducing my Pramipexole 1.5 years ago.
Now each night I take......
0.125mg of Pramipexole
100mg Gabapentin
200 micrograms (0.2 milligrams)
Of Buprenorphine.
I sleep soundly.
The goal is to only be taking the Buprenorphine.
Kind regards Julie from Western Australia
Isn’t it wonderful to be able to sleep?? I am so glad for you. I really do believe there is
No “one size fits all” for any of us who suffer with this very annoying and sometimes painful condition. Our best bet is to find a doctor who works with us to find the very best medicine that works!
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