Rls or periodic limb movement?

Hi all u have no idea howling if been searching for other sufferers mine came on over two yrs ago overnight I'm on 8mg of ropinerole at night but neurologist put me on ropinerole n doesn't wanna know now if asked twice to b put ina sleep clinic n been refused n I'm getting worried as wen the doc started treatment after a year and a half of ignoring me he took me seriously after I showed him bruises bigger than my hand I was waking up wig and now I'm waking up win new smaller bruises now plz help xz

7 Replies

oldestnewest
  • Hi Kerrie, RLS is what stops you from sleeping or wakes you up, with sensations and that urge to move your leg/legs. PLMD, happens while you are asleep, you move and kick in your sleep. If you have a hubby/partner they would know if you have PLMD as you are most likely kicking them in your sleep. If you live alone you would get a good idea if you have PLMD as your bedding would be all over the place in the morning. And yes, a sleep study should be allowed for you. Why are you being refused..? 8mg of Ropinerole is way tooooo high and you are most likely experiencing augmentation. Thats when the dopamine med turns against you and your symptoms become worse. If your doctor is not prepared to help, then you need to see another doctor who will. RLS doesnt come on over night, unless you have taken something to trigger it off. Certain meds, can trigger RLS off. Please look at the websites which can help you. rls-uk.org or rlshelp.org Both give good info about what meds and OTC meds to avoid. Check them out and see if you have taken anything which could have set your RLS off. Thats if you do have RLS. You have to have the criteria to be diagnosed for RLS. I will post that in a minute.

    Also have you had a ferritin level test done. If not ask your doctor for one, low ferritin can be a cause of RLS. The ferritin number needs to be 70-100 for people with RLS. So, good idea to get that checked.

  • Hi Elisse

    As a very recent entrant to the world of neurological disorders I realise that not all RLS sufferers suffer in the same way. Some suffer daily some less frequently. My current situation is that I am being introduced to Ropinarole and am waiting to see a neurologist in a month's time. Can I ask your view on what an urge to move your legs is. Can it be opposed or is the movement involuntary. I have pain and an unpleasant feeling in my legs most of the time. What I can only describe as a pressure builds and then one or usually both legs spasm and things settle down for a bit. Oddly a friend who has rls may have the need to get up after sitting for an hour or so. It has been suggested to me that because my main problem is not a need to move my legs, even though they move involuntarily, I do not have RLS but I am not clear about this. I definitely have PLMD and once again was up in the early hours today with troublesome legs. If I try to sleep the leg jerking wakes me up!!

    Martino

    PS I think the current plan is to have me up to 2 mg of ropinarole by three weeks time by 0.5 weekly increments

  • Kerrie, Elisse is right with everything she told you. How did you get to 8mg of Ropinerole? Like she said, that's a huge dose and multiple times more than the max for RKS or PLMD. It would make sense for you to obtain a second opinion regarding your diagnosis and medication regimen as ropinerol has some very bad side effects, especially as the higher doses like you are on. Hope you are well!

    Jerry

  • If you were my age bruising is so normal we mostly ignore it. Neurologists in the USA always want a sleep study. They are looking for the wrong thing. Sleep clinics look for closed breathing passages, that is passages that relax and cause you to snore or in my case central sleep apnea where I hold my breath for 45 seconds 22 times an hour. They all want to sell breathing machines, but the machine begs the question. We are staying awake because our limbs flail away so much it is impossible to sleep even if you have a breathing machine hooked up and are diligent about it's use. I have two brand new machines that help my breathing and if I use them I am breathing like a baby and wide awake from excessive movement caused by the compulsive need to move everything--arms, hands, toes, knees, ankles and even face movement. The machines are useless in me.

    Windwalker

  • I have suffered from both conditions for many years. PLMD affected both my and my partners sleep. RLS made attending evening seated events increasingly painful unless I was riveted by a great film or performance. Boring meetings were the pits. One solution has been to go on walks and dance in the evenings. Flicks in the sticks is great as I can sit at the back and stand if my legs get painful. In theatres I try to get an aisle seat at the back and let my neighbours know before the start that I may need to stand during the performance. I have been taking Ropinerole for several years now. 3mg about 45 minutes before bed time gives me and my partner a good nights sleep. 1mg about 5pm and I can survive evening seated events more easily. Because the affect wears off after 6 hours I had been waking at 5am and am ready to get up. Now if I wake to go to the loo at anything from 3am to 5 am I take another 1mg and it sends me into another drowsy sleep. My doctor was concerned that I was exceeding the recommended daily dose by 1mg and sent me to see the specialist for the first time and he came up with some more solutions were my condition to get worse. I had read about Ropinerole several years before I first went to the doctor and requested it. I waited till my RLS was of a daily occurance. Interestingly my specialist thought that PLMD would not be reduced by Ropinerole. My parter assures me he is wrong.

  • Don't you think 8 mg is to much I thought 4 mg was recommended dose the trouble is the doc just puts tabs up because the dose stops working then augmentation starts its best to change your tab and start on a low dose

You may also like...