It seems like most people have restless legs syndrome, I have restless syndrome. Every night I take Requip 3, and during the day I take requip 1 of my toes twitching.
when I go somewhere overnight and forget to put my requip in, that night my toes do their twitching and then they start hurting so bad there's no way I can go to sleep,but I usually make sure I have them in.
Does anyone else have restless toe syndrome ?
No, it is my legs and sometimes arms and body. My toes are not affected. I don't think I've heard of a case where it was confined to toes before. Was it always your toes? Is that why you started requip? If you have been on requip a long time it is possible that it is contributing to your symptoms now as that range of drugs (dopamine agonists) can cause problems if used over a long time and particularly in relatively high doses such as you are taking.
Yes I do it seems but it still hasn't been confirmed that its RLS despite having MRI scans. I do not fit the criteria really so no futher on that when it was first 'diagnosed'
Yes I do and I have had it confirmed by a Neurologist
Have had RLS for 30 years
Have just managed to get myself off Patches & was put on Pregabalin 2 months ago
which hasn't worked for me
Am now taking Tramadol 50mg every night which seems to be helping
I was referred by my GP to
a specialist foot surgeon re my painful and twitching toes
He immediately said it a nerve problem & referred me on to a neurologist who agreed, especially when he heard I had RLS.
He also advised my GP to prescribe Capsaicin cream
& I do find that eases the pain too
Hope this is of some help to you
Regards
I get RLS sensations in my left foot mainly under the arch but never by itself always accompanied by the sensations in my legs. I get it in both legs and my left arm but getting it in my feet is by far the worst place for me x
No toes, but one leg or the other..anywhere from the calf to the knee, AND for good measure an area between the shoulder blades has a dull ache. Usually the back goes first then one of the legs, then the other. Then I start thinking about a chain saw.
You are not alone, My RLS always starts with the toes on the left foot and spread to the calf, impossible to stay in bed and sleep. Spend many night hours walking about the house. Have just managed to get off ropinirole, horrendous. Now trying Neupro patches (rotigotine). My ferritine is low at 66ug after 4 months on oral iron and vit C it was 25ug. I am hoping the neurologist will concede infusion of iron to get level up above 150ug which according to some studies will cure RLS. one way or the other I am going to kill this evil affliction, and when I do you will hear from me again. In the early days I could use Lanacane to numb the toes for 4 or 5 hours and that cured RLS in my leg, unfortunately it becomes less effective the more you use it and it makes the skin sore, but worth a try for a quiet night now and again
No but that is very interesting
Yes but it then always moves to my legs. As Involuntary Dancer mentions above, it could also be high doses of Requip. Augmentation causes RLS in other parts of the body and it seems you’re on a very high dose.
Hi,
My name is Annelle, I have restless toes syndrome.It's a irritating sensation that makes me move my toes or the feet until it goes away.I'm taking ropinirole 3mg. at night several hours before going to bed.I also take ropinirole 1mg. for during the day.
If I go somewhere for a few days and forget to put in my ropinirole I suffer with horrible pain in my toes, so now I make sure I have them in.I alway's will take the ropinirole 3mg. and the ropinirole 1 mg., because I don't like the sensations in my toes when I don't take them.
Hi,
I wanted to add that RLS runs in my
family.My mother had it in her legs and when I was a teenager I had it in my legs ,but now I only have it in my toes on both feet.
I also have arthritis in my joints in my toes and I'm wondering if the arthritis has something to do with my restless toes, I mentioned this to my Doctor, but he didn't think it did. Maybe it's just coincidence!
My Doctor put me on vitamin D supplements, I hope they help with my restless toes syndrome. But I will continue taking my ropinirole.
I hope this helps someone that is suffering with restless toes syndrome, I would suggest talking to your Doctor about taking ropinirole ,I started with 1mg.and now I am taking 3mg. at night and 1mg. during the day .
hope this helps !!
Annelle, your dose of ropinirole is way too high and very likely contributing to your symptoms. RLS, or in your case, RTS, normally only occurs in the evening and night. If you need to take ropinirole during the day, I assume that means your symptoms also occur during the day. This is one of the four telltale signs of augmentation, and something that happens almost exlusively with dopamine agonist, of which ropinirole is one. The other three are increasing intensity of symptoms, symptoms occurring more quickly when at rest and symptoms in other body parts. See this easily accessibly paper: sleepreviewmag.com/2015/02/...
I would advise you to read this paper and also the many many posts on this forum on augmentation. You may want to use the search function. It may be wise if and when your current doses of ropinirole don’t suffice any more, NOT to increase them further, but rather reduce. That may be the start of what may turn out a difficult withdrawal process. But in the end you will most likely find that your RLS is far less severe than it is now.
Get yourself loaded with information and when it is time, talk to your doctor to get proper help (see the paper for suggestions). Lots of good info, also on augmentation and alternative treatments and medicines to avoid, on rls-uk.org. Take care. And come back with questions of you have them or simply for support. We’re here to help AND we understand!
I only have it in my toes ,thank
goodness. It started at night and then I started having RTS during the day while relaxing.
my Doctor started me out on low doses of ropinirole and gradually increased them to what I'm taking now.
The pain in my toes is so severe when I don't have my ropinirole to take ,that I NEVER want to be without it.
I can stay with the doses I'm taking, but I will keep on taking the ropinirole, I don't think I ever want to be without my ropiniroles.
I am willing to start taking Iron supplements, because I've been anemic several times in my life ,and that may help my rtl , also my Doctor has prescribed VitaminD2,he said I was very low on Vitamin D. The two supplements D and Iron,may help ,it sure won't hurt to try who knows I may be anemic and not know it.
I'll try them and then I'll let everyone know if they helped.Who knows they may help some of the others that are suffering with RLS ,Wouldn't it be great if taking Vitamin D or Iron tablets would help lessen their RLS, It's worth trying,Right?
Does restless legs syndrome cause high blood pressure
Restless leg syndrome 
Restless legs syndrome
Restless legs
What works for restless leg syndrome 
