Just be diagnosed with RLS today Help!!!

Just be diagnosed with RLS today Help!!!

Finally am not going mad, Guy's have diagnosed me with RLS today and medication started. Does anyone have any experience with Clonazepam?

I now have something else to add to my other illnesses lupus, fibromyalgia, CKD, Chronic Fatigue, Osteoarthritis, Osteoporosis, insomnia, and severe migraine, each having it own chronic pain as am sure you all know. Is there anyone out there going through the same as me. My friends can't relate.

Would love to speak to like minded people, need to make friendships with people who understand eg 04:02am and I am still awake.

Nathalie

14 Replies

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  • Morning :) welcome but same time sorry you've had to find us here but you'll find it a useful site to be on you'll find everyone helpful and of course understanding ,

    the best advice i can give you is to go onto this site rlshelp.org./ you'll find all sorts of useful info guess we call it the RLS Bible ,

    I've most probs have been on Clonazepam at some stage lol been on so many meds forget most of them you'll find different meds work different with different people we all seem to be different lol ,

    hope you get some rest soon :)

  • Morning, Thank you for your welcome...your right am sorry also to find us here.

    I will take a look at the like thanks. I am going to try and get a little sleep took new medication tonight and it hasn't worked guess like the others it a waiting game.

  • your welcome :)

    you'll find that link most helpful .... has all the info you'll need on the meds .

    aye it's a waiting game have give meds time to get into your system etc! ... hope you get some sleep night night .....:)

  • Hi - i am fairly new to this site but have had RLS for over 40 years. I hope you find this site as helpful and informative as I have. I have been on Clonazepam for about 3 years and have gone from 0.5 to 3 mg and now back down to 1mg. Although I have 1-2 hours of misery every evening getting up and down, struggling with the jumping legs i do get a reasonable nihhts sleep. The higher dosage reduced the evening problems but made me really tired during the daytime so much so that my companies Doctor has declared me unfit for work since January. I am going back to work next week now i have found a reasonable compromise. Unfortunately for me my GP won't even discuss other meds so i cannot give you a comparison. Quite alot of people seem to find that different meds work better fot them than others and sometimes a change of med will work for a while before they have to change the dosage or try a different med. You will see some people have different ways of physically releaving the symptoms by massaging, stretching and so on - personally i use a meat tenderising mallet to bash my thighs with. Everyone is different but everyone here understands the pain and frustration you have. I think the best advice i can offer is to get lots of appointments with your GP so you can properly monitor how the Clonazepam is working and affecting your RLS and your mental state especially during the day. I really wish you the very best in dealing with RLS and hope you find this site and its extremely knowledgable, supportive and sympathetic contributors as helpful as i have.

  • Peterpillpopper,

    I mean this in the kindest way though it sounds like I am being a

    female dog...haha..

    Do you ever worry about causing blood clots from pounding even

    lightly on your legs with a mallet? I must comment that you are quite

    creative in finding ways to cope. =)

  • Hi there. i have not tried Clonazepam and dont think i could, as i know it has a long half life, therefore would probably make me sleep all day. I am sensitive to most RLS meds. so side effects are not a stranger to me, most meds give me side effects in one way or another.

    Good luck with the med and i hope it works well for you.

  • You look young and you are very pretty. =)

    Welcome to the club here. You will find yourself in good company

    here. Gypsie63 pointed you in the best starting point direction.

    It's been so helpful for me.

    Karen USA Wisconsin

  • Hi Natalie,

    I take Clonazepam 2 x 0.5mg at night and it takes about an hour and a half to work then I am ready for sleep. I get a full nights sleep but I still wake up with aching legs. I have been on this dose for about four years and I have not had to increase it. I also do not wake up groggy. Hope this helps. Good luck.

  • Yikes. That is a very good point about blood clots. I used to find myself using my fists to alleviate the discomfort and still do if i am not at home. I have found the mallet less pointed than a knuckle and strangely easier to graduate the level of force required to achieve the desired effect. I suppose it isn't a good idea bashing the legs within anything, but when those legs start jumping it is so difficult to resist. Seeing my GP on Monday and will discuss with him. He will probably tell me to use the mallet on my head - not the legs. Thanks Yikes I very much appreciate your thoughts.

  • Rather than use a mallet I use a percussion massager which probably works in the same way but a bit safer. Howver I was using it practically every hour last night and it didn't work expect to stop the sensations on a tempory level. Hoping for a better night tonight and that's also what I wish everyone on this site.

  • Welcome Nathalie I am sure you will find the support on this site you are looking for. Just spent the afternoon stretching out one leg as the electric shocks were active and I was in a conference so of course couldn't move very easily. Everyone must think I am such a figget. That has to be one of the worst situations when you have to sit for long periods and the jiggly legs start.

  • Welcome to our group! Your list of issues is very similar to mine. Chronic migraines, Fibromyalgia,osteoporosis, RLS, and a lot more as far as chronic pain issues from several back and neck surgeries. Did you know that people with Fibro are 13 times more likely to develop RLS than people without Fibro? anyway, Clonazepam may help your RLS, and like others have said we all are different when it comes to meds. That link that they gave you at the top is owned by an RLS expert and I have been dealing with him for 14 yrs. You can email him and he will email you back. Clonazepam , normally, does not really stop RLS, but it is sedating. In my experience, and from all the people I have talked to, plus my support groups, Clonzepam is not a first line treatment, though gald your doctor is willing to use it. It is usually used in combination with other meds that are approved for RLS. The treatment page on rlshelp.org is our RLS BIble as Gypsy said, and also see the list of "Drugs and Foods to avoid" even over the counter meds, like the sleep and allergy meds. Did your doctor sugggest anything about a sleep study? PLMD is a disorder that goes along with rLS lots of the time. It is Periodic Leg Movement Disorder (kicking while you are sleeping, and you do not notice, but your sleep partner does). It is good to know if you have any other sleep issues going on when you already have RLS. :)

  • Hello there. As you can see our group is very helpful and the site is great too. I am sorry to hear of these problems that you have. I have been on clonazepam for many years with RLS and therefore I am quite tolerant to it. It helps me a bit. I have osteoporosis too and have Alendronic Acid for that. It makes my RLS worse when I take that medicine but I have no choice. I understand about your friends not understanding and we have all been through that. I am on other meds too for my RLS. You will find support on here and we are pleased to have you. I find clonazepam which I have to take 1mg am and 2mg at night helps slightly with the horrible sensory disturbance but not sleep. I hope it helps you with sleep. You have been given great advice from others in the group. Let us know how you get on. I only recently joined and I have received a lot of support. We are all different when it comes to medications. Drugs like gabapentin, pregabalin are often used for the fibro. Were any of these suggested? As Night Dancer has said clonazepam is not the first line treatment for RLS. Was ant other medications discussed? Tahere are some now specifically licensed for RLS. They are requip, mirapexin, rotigotine. They were not suitable for me because of the side affects but not everyone gets the side affects and everyone is different.

  • Hi I was diagnosed with rls in october 2012 having suffered arthritis for nealy 16 years just thought it was nothing more was given tramadol first but couldent take it made me sick then was given nortriptyline andclonazepam which i am still taking some nights are good others are awfull

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