Hit a brick wall!

[Scattypatty]

I'm currently trying to get off Ropinirole and I've hit a brick wall! This last week has been a nightmare. Since getting down to .05mg of the drug my RLS has gone crazy. I've only had co cocamol to help with the pain, which hasn't helped my legs very much. I've had so little sleep and last night I just couldn't stand the pain and another sleepless night so took another 0.25 of Ropinirole to get me through the night, which did work and I had a much needed 7 hours sleep. This morning I'm feeling really guilty for doing this and although thankful for the sleep feel I've taken a step backwards with reaching my goal. Which I can honestly say I don't feel I'm ever going to reach as it seems such a long way away. I did see a neurologist in London the other day, I was really hoping she was going to tell me something new, and kinda wishing that there was some sort of miracle out there that was going to end my suffering but sadly it was not to be. She only told me all what I had already found out through this Forum. She has prescribed, which I haven't got yet, a very low dose of Pregabalin which I think is 0.25 which I can take with the 0.5mg of Ropinirole for 2 weeks and then to up it to 0.50mg and gradually come off the last of the Ropinirole. All you experts out there does this sound about right. I feel mentally and physically down at the moment and question why I am doing this. Somebody on this Forum said she looks around the Supermarket and nobody else seems to be having trouble with their legs, thinking she is the only one that suffers from this, I do the same all the time, sitting on trains, buses, airplanes, seeing people just sitting there, not fidgeting, sleeping or just relaxing and wish more than anything that I too could be one of 'those people'. Thanks

[Joolsg]

Pregabalin starts at 25mg. I know how hellish withdrawal is - went through it in 2016. I threw away all my Ropinirole to stop myself taking more in desperation. Sadly the last 2 weeks are unbearable and you’ll get little sleep and leg jerks every 10 seconds.

I can only suggest asking GP for short term opioids like tramadol or OxyContin. The pregabalin won’t help until you’re completely through withdrawal.

I can only urge you to stay strong and get off the dopamine agonists. You’ll think you can’t make it but you can.

If you can get cannabis- do. It saved my life by giving me an hour’s sleep during withdrawal.

[Joolsg]

Also, life off Ropinirole is So much better- daytime RLS has disappeared and the nights are much better, although I am on OxyContin and pregabalin. The daytime leg jiggling on the bus will disappear but only if you get off Ropinirole. Make sure you have a clear diary for the next 2 weeks so you can catnap whenever and wherever.

[Scattypatty in reply to Joolsg]

Im not as brave as you to get rid of all the Ropinirole but I'm definitely going to try not to regress any more. So pleased you managed to get through it. Thanks again

[Joolsg in reply to Scattypatty]

We will all be thinking of you and wishing you strength. Really hot baths and deep leg massage will help. Also try compression socks and lying with your legs in the air against a wall. Or sitting on your heels until your legs become numb. Stay strong 💪

[Hidden in reply to Joolsg]

You just made me realise something. I love long hot soaky baths. I can stay in for literally hours. Start off reading, then begin to feel sleepy. Not a good combination, it's cost me quite a bit in new Kindles. (I have learned to take a paper book instead).

But then - Wham, really violent legs allovertheplace. Good for making bath foam, but a bit uncomfortable.

Conclusion, maybe I'm unique, but hot baths make my legs worse.

[Joolsg in reply to Hidden]

Just goes to show we really are all different. Coffee is a trigger for many but also seems to help others. There really is no rhyme or reason with this disease.

[Hidden]

It sounds terrible, but perhaps the best thing to do is just stick it out.

There's no need to feel guilty about taking extra Ropinrole, in fact you have recognised for yourself that it was a mistake. You made a mistake and you should congratulate yourself that you realised this. Well done.

Interesting that you referred to the member who wrote about observing other people in the supermarket. Naturally you're envious that they don't appesr to have restless legs, don't APPEAR to. What happens when they get home and try to sleep? How many of them bave diabetes, how many neuropathy, MS, epilepsy. Considering that one in every two people have a cancer diagnosis at some time in their life, how many have cancer?

It helps sometimes to gain a broader perspective on our suffering, we are not the only ones suffering. You are not alone, there are any who understand your experience and sympathise with you.

[Scattypatty in reply to Hidden]

Thank you for bringing me back to reality! I was feeling sorry for myself, too little sleep. Of course it's nothing compared to how some people suffer, I know that and should be grateful that at 74 that's all I have to worry about, healthwise. The good news is after the good nights sleep, my legs have been a bit better today. I haven't taken the extra tablet tonight so if I have a bad night I feel I can deal with it better now.

Thanks again for the advice. This Forum is my first port of call when I am feeling down now, just knowing there are others understanding what you are going through is so comforting.

[Hidden in reply to Scattypatty]

I appreciate what you say. The lack of sleep has always been the worst part for me.

[JakeRLS in reply to Scattypatty]

You might want to consider Kratom. I used it for about 4 months, and it helped wean me from the dreaded Rope. Eventually lost it's effectiveness, but I was able to get a RX for Hydrocodone which has been effective for about 2 years so far.

[Scattypatty in reply to JakeRLS]

Thank you for your suggestion, I'm starting to hear a lot about Kratom now. I'm going to find out more about it.

[mmb8083 in reply to Hidden]

So true. I don’t have RLS in the supermarket either because I’m either standing or walking but 9pm every night the nightmare begins. Occasionally I notice a few people moving legs on a bus or Sitting in a meeting but there again the real leg movements generally start closer to bedtime. I am so very envious of people who can lay down and fall asleep as soon as their heads hit the pillow. I always think. You don’t know how lucky you are to be able to do that. It’s definitely putting a damper on my life

[Scattypatty in reply to mmb8083]

I know exactly what you mean, I do notice people during the day as I am going through augmentation so it affects me day and night. I used to be able to go to the cinema during the day but now unless I get a seat right at the back so that I can stand up, I don't bother going. But as I said in a previous reply there are so many people worse off but You would have to be super human for it not to get you down sometimes. Stay strong

[Jumpey]

Sending love and kind wishes to give you the strength to reach your goal.Please don't beat yourself up.Be kind to yourself.This illness is a real challenge psychologically because of the sleep deprivation. When I get really down I find a really good cry,howling!, helps to get me back on an even keel emotionally and then I can carry on more effectively and positively.xx

[Scattypatty in reply to Jumpey]

Thank you Jumpey, so kind of you to take the time to send me your support, I really do appreciate it. The crying and screaming helps for me as well, when you are dealing with RLS every day it's bound to get the better of you sometimes. Like you I'm so much better when I've let off steam . All the best xx

[bdbengtsson]

I've been taking Ropinirole for RLS for at least 10 years. I've been on one DA medication or another for 20 years. For about 8 years, I was taking Oxycodone on weekends instead of Ropinerole. Oxy was a magic bullet. It was always guaranteed to work no matter what I ate. Ropinirole is always a gamble dependent on what food I ate. I often had to double dose with that hour walk around wait or trip to the hot tube before trying to go back to sleep. If I had any beer for dinner, I would just double dose because alchohol is a major RLS trigger for me. However, Oxy became problematic in that I was very tired the next day and it affected my mood. I gave it up for good about a year ago. I was up to 4mg of Ropinirole each night in order to sleep. RLS used to be just a night time problem. Then, It got to where I couldn't watch TV in the early evening without the RLS firing up. As soon as I got comfortable in the chair, my feet would start up. Also, something new, my right butt cheek got into the act. There's no way I'm taking Ropinerole more than an hour before bed. When it works, it demands sleep i.e. I have to go to bed. I'm thinking "This Sucks!" , I can't even watch TV without banging my feet together and stomping on the floor.

I came across people in the forums and You-tube having success with Kratom. After a bunch of research, I bought some Red Vein Borneo powder. (A 70 year old woman wrote a book about her research and use of Kratom. You can find it on Kindle for $0.99.) I took a tsp of powder in warm water at 6:00pm and sat down to watch TV. The RLS started up immediately but after a half hour, it subsided. I took another tsp. in water at 8:00pm and went to bed around 9:00. To my surprise, I had no symptoms. The first week, I did have some daytime problems that were similar to the after effects of Oxy. I don't know if it was the cold turkey off Ropinirole or the Kratom. However, I stuck with the Kratom and I'm symptom free. It's been about 3 weeks now. I've not been able to take weekend naps for over a decade. I decided to try using Kratom on a weekend afternoon to see if I could take a nap. I took a tsp, waited a half hour and lay down. My first afternoon nap in years!

[Scattypatty]

Well done you for finding something that really suits you. I'm such a novice when it comes to all the different medications, it's only since being on this Forum that I'm beginning to learn about them. I'm a real coward when taking tablets and I don't think I would have ever gone on Ropinirole if I had the knowledge about it that I have now. I haven't read up about Kratom or Red Vein Borneo powder yet, are there any side affects to worry about. I'm from the UK and haven't heard of them, I told you I was a novice!! I've been very fortunate that I have never been in a situation that called for it. Thank you for your input.

[bdbengtsson in reply to Scattypatty]

Check out this book

Using Kratom for Chronic Pain and Restless Legs Syndrome By Mary Leonhardt

[lynnmcguire24]

I am sorry to hear that. I am wanting to go off Ropinirole myself. But, I am going to take Magnesium (citrate/malate) & Melatonin to night to help my restless legs. I have done some research & that is what I am going to do. I am tired of taking medications & want to go natural. Good Luck!!!

[Scattypatty in reply to lynnmcguire24]

I can totally relate to what you are saying, I really wish I could come off all medications as well. Please let me know how you get on and good luck X