Painful aching legs continue despite being on ropinirole is this normal?

[Gentlechelle11]

I started with restless legs during pregnancy 8 years ago and it has never disappeared, just got worse, to the point where lack of sleep was affecting me during the day. I spoke with my doctor who recently started on 1mg ropinirole at night which has helped tremendously with my restless legs symptoms and I have begun to get some much needed sleep.  However I still sometimes wake up early in the morning (2am) with extremely aching legs and have to take pain killers to help me to continue to get my much needed sleep and even on the nights I do sleep through I wake up with such aches in my legs that I need to take painkillers.  Is it normal to still experience painfully aches in my legs despite taking ropinirole?

[martino]

Hi -I can't answer your question but am very interested in it. If the ropinirole is being effective then it should or could get rid of the painful legs which are part of the RLS symptoms. I have tried ropinirole and pramipexole and could not tolerate either. My neurologist suggested that despite the non-tolerance of the other dopamine agonists I try the rotigotine patch and failing that Gabapentin. The patch seemed to help as it got rid of the horrible urge to get up but the pain in my legs continued. I rang the neuro and asked her whether, as the pain was continuing, was the rotigotine working i.e. if it was truly effective it would stop all the RLS symptoms. To an extent she equivocated and suggested that I supplement the patch with Gabapentin so now I have 1mg patch , 900mg Gabapentin and still have pain! It is now less severe when I wake but it seems to build over the next hour or so. I was taking Zapain but my doc put me on Tramadol so I now take 100mg of that in the evenings between the Gabapentin doses. Sorry about this rambling but as you can see I can empathise a bit and hope someone can shed some light!

[Gentlechelle11 in reply to martino]

Thanks for sharing your experience with me ,whilst I wish you were not experiencing pain, it is a relief to find someone with a similar experience. The ropirinol does help to stop the urge to constantly move my legs and help me get some sleep but it does not totally relieve the pain. I currently take over the counter pain killers at present and have only been on ropinirole a few weeks. I will give it a bit longer to see how things go and keep a record of my symptoms and if things do not improve or the pain becomes more of an issue I will get back in touch with my doctor. 

However at present I am relieved to be on some medication that helps. I have had this condition for 8 years and up until recently my previous doctors have only prescribed me quinine which did nothing and told me there were medications available to treat this condition but they did not like to prescribe them.

[martino in reply to Gentlechelle11]

Hi

It is good that you have now got a doctor who has some understanding of RLS. Quinine is ok for leg cramps but ineffective for RLS. I keep a daily journal of sleep and the time I take my meds. I want to see what works best for me and it informs the doctor( who sometimes has to be encouraged to listen). Let's see who can shed some more light! Best wishes!

[SLMCP]

I use Co-codamol with my Neupro patches, not really sure what helps, or indeed doesn't! I am compiling a huge list, with the help of everyone on this site - to take to my Neurologist in June.

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I have sent you a private message.

[Cfall]

Greetings from Cfall  

Drugs are not the answer. The problem is an over active thalamus. Look into relaxis.com. It's available in US & England. FDA and CE approved. I suffered on ripenrole. It took time to get of the drugs. The medical device is the way to go. I wake up clear headed and it's wonderful . The offer a trial period in US. Hang in there Claudine

[nightdancer in reply to Cfall]

The Relaxis pad, as stated by the inventors and also the facebook page and the web site, it is for Primary RLS ONLY. They emphasize that very clearly. So it is not for everyone. I know the doctors very well who invented this and studied it, and it is only designed for primary RLS.

[gretakmac]

I have been on every medication available for RLS, including pramipexole, Ropinirol, Nuerpro and now find relief with Tramadol and A low dose of mirapex. Can't quite get off mirapex yet but working to that end. I am sleeping like a dream but my legs sometimes still ache and feel really cold, but not usually cold to the touch. Weird, isn't it? Just happy to be mostly symptom free and sleeping well as long as I take my pills on time! Anyone else have cold legs?

[SandieBeaches in reply to gretakmac]

Yes! I always felt like the bones in my legs were replaced by icicles. Causing a freezing sensation on the inside and a deep, deep ache. Ropinerole was helping but just suddenly stopped working and my symptoms went from only at night to now 24/7. I am miserable! My doctor doesn't believe in narcotic pain relievers. Hot baths used to help but not now. Anyone know why my symptoms would suddenly become so much worse? I didn't miss any doses of ropinerole.

[Gentlechelle11 in reply to SandieBeaches]

Hi sandiebeaches

I think this has something to augmentation which can occur on ropinirole where symptioms become worse. You may have to see your doctor to change your treatment. I had the same effect when I was taking amytriptaline. I started off working brilliantly and then my symptoms got worse and it started experiencing symptoms in my arms as well as my legs. However once I came off the drug my symptoms in my arms went away.

[Windwalker]

Yhere are as many different symptoms as there are people with RLS. I have a place on my left hip that itches so bad I want to dig it out with my finger nails. I have never heard of itching from anyone else. 

I can be perectly fine and in two min want to scream bloody murder. My knees start hurting so bad that I become weak and almost collapse and that goes on for two or three hours even though I have taken my meds. The only relief I can get is from so kind of opiate, namely codine.

I don't think  we will ever find a common thread that will bind us into a catagory that fits a standard treatment, but we can all dream of a cure!

Windwalker

[Doings in reply to Windwalker]

You are not alone I get itching skin on legs which pre empts an RLS onslaught. Anyone touching my feet including myself, triggers RLS. If i ever have a pedicure it has to be in morning. It’s embarrassing kicking about like something possessed.

[bestestinthewestest]

As a reply to Windwalker, I have zingy itches all over as part of my RLS! I have bruises, scratch marks, etc. from scratching. The itching is IN MY Skin! Nothing helps. I have tried everything. It isn't eczema, dermatitis, or allergies. My skin isn't dry.

[Doings in reply to bestestinthewestest]

Me too but not so bad as you. If you find a remedy let me know !!!