Hi, I just wanted to say how good it is to see a site especially for RL sufferers.
I am 61 years old and I have had RL for over 15 years and my neurologist says I am in the top 2% of sufferers. What an amazing achievement!
I have type 2 diabetes and control it with diet and exercise. I lost 31+ Kg and was able to reverse the insulin and medication use. I still need to lose about 10 - 15 Kg which is my current challenge and my neurologist says it should help.
My iron/ferratin levels are good though I have to check what they were last blood test.
I have eliminated caffeine, alcohol, salt, refined sugars- including syrups, gluten and dairy . I take iron, magnesium, vitamin Bs, pramipexole, baclofen, pregabalin, reboxetine and oxycodone when they are really out of control.
I was prescribed fentanyl by a physician some years ago and it was marvelous. I didn't have any RL. I decided to go off it after about 18 months as I was physically dependant on it and it seemed silly to just keep increasing the dose every 6 - 12 months. I knew I would have to find another solution eventually anyway and I didn't like to be dependant on a drug in the way I was.
I have arthritis in my feet, ankles, knees and the pain from these triggers my RL. I'm on Tramadol to help control the pain, thus the RL.
I am a gardener and that is my best form of exercise. However, lifting things now caused pain to increase so it's getting more difficult.
I have RL from morning to night and am standing up now as I write. f(It's 8 pm in the evening Australian time.) It's the only relief I find when they're bad. However, it means that the pain in my joints increases which then triggers the legs. I resort to the oxycodone at times like this to shortcut the RL.
I sometimes despair that I will ever be able to sit and relax for an evening or even sit down all day at work. I have a sit/stand desk and use it to the full.
I am seeing my GP on Jan 3rd and hope to discuss the whole problem in detail. It just doesn't seem to be really improving as much as I think it should.
I shall be so glad of any ideas. Are my drugs working together or not? Is there anything I can do?
I look forward to reading more posts and I feel right at home here- it's wonderful to have found a place where I'll be understood and I hope will find some new ideas to try.
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restlessstoz
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Hi restlessstoz, I too am from Australia. I have had rl for a few years now, the only relief I can get is by taking Tramadol, I usually take 100gs in the morning and another 50mgs about 6pm which takes me through till the morning.I worry because we hear so much anti-tramadol but when I did go off it, my legs got really bad so I only lasted 10 days without it, so now I say "what the heck" i need it so I will take it..I also have C.O.P.D, so I am on oxygen 24 hours which is also a nuisance, but i am learning to manage it okay..I am sorry i can't really advise you on your medications but I am sure if you discuss all this with you Dr. when you see him, they can advise you the best way of dealing with it..This is a great site, I have learnt so much especially about my C.O.P.D..You will find people on here are so nice and helpful..
Thank you mistymim, it's so good to talk to someone who understands. Being on oxygen must be a real challenge and I agree that if Tramadol helps then you have to have it.
My doctor is worried that I'm taking too much medication... It's all been prescribed and I only take what the dose says. However, it's getting really complicated with all the meds now so I want to try to reduce- if it's possible. As you say though, what the heck, if I need them then I need them. I'm certainly doing everything I can to help myself otherwise.
I am always looking at different medication for my lungs, I have found a few on here and have asked my Dr. to try me on them and he has always obliged. There was a Dr. here once as a locum and I asked him what he knew about rls and he said he had never heard of it! lol...so some Doctors need a bit of a refresher course I think. I tried an anti depressant called Kalma and I couldnt take it, so I am not on any atm..could do with some at times...
Hi mistymim, I went to bed after the last post and didn't read your next one till just now. (Not that I slept well at all... but that's par for the course.
I haven't been that assertive with my doctor yet but I am heading that way. He's a good GP and has been looking after me for over20 years I think! Wow!!! Anyway, I can talk to him easily and I will try to have more ammunition for when I have my appointment.
Pity you can't take antidepressants. I can't take any anti-inflamatories and I could really do with some to help my arthritis. However, I can't change that so I'm concentrating on what I can. I must say that with the issues you face, it's not a surprise that you could do with some! I hope that chatting can help a bit too. Knowing that there's someone else who's in a similar boat can be a bit of a comfort.
Hello and welcome. You definitely will get great info and support here, I don't know what I would done without this site. You do have a lot to deal with and it sounds like you are doing a great job of looking after yourself as best you can. That is a lot of meds you are on - not saying it's a bad thing because combination therapies seem to work better for many people than monotherapy, but it does make it harder to figure out what is and what is not working for you. A couple of things leapt out at me:
Are you familiar with the concept of augmentation with dopamine agonists? As you have pramipexole in the mix there is a possibility this is causing augmentation, and the other meds won't be able to counteract this.
Anti depressants can trigger RLS or aggravate it. I hadn't heard of reboxetine but a quick google search suggests it is one of the very few anti-depressants that does not trigger or aggravate. There doesn't seem to have been much research, possibly because it is not licensed for use in the US where (it seems) most of the RLS experts are. But we restless-leggers tend to respond very individually to meds - for example, wellbutrin/bupropion is an anti depressant that is not believed to aggravate RLS but I am sure I have seen comments on this site and elsewhere that people have found it had a negative effect on their symptoms.
Hope this is some help and I am sure others who are much more knowledgeable and experienced than me (I only got a diagnosis earlier this year and still trialing meds) will have some ideas for you to take to your GP. Hope it goes well.
Hi Tattiana, Thank you for your reply... I only started on the anti-depressant two weeks ago on the advice of my neurologist. He suggested it may have a positive effect on RL. I will give it a trial and see. I'm also worried about augmentation after reading some posts and will discuss with my GP. As I've also read though, there isn't a great deal of understanding or knowledge about RLS amongst the medical fraternity and my doctor is one of them. He certainly tries his best to help but isn't terribly knowledgeable. My neurologist seems to be quite good but I've read some things already here that suggest there are other things to try as well. I suggested cannabinoid therapy when I saw him two weeks ago but in Australia it isn't legal unless special permission is granted for a prescription and the authorities are incredibly cautious about giving it. I live in hope of finding some solutions here.
Hi restlessstoz, welcome. I second Tattiana in various things, especially the number of meds you are on and the pramipexole being one of them. I suspect augmentation, as you describe you have RLS symptoms during the day, whereas they typically only occur in the evening and at night. As a first course of actuon you may want to reduce your dose of pramipexole slowly until you’re completely rid of it. Once you’re several weeks without, you can re-assess the state of your RLS and take it from there. In general, I think taking a few medicines and as low doses as possible is the best strategy, combined with striving for 90+% over symptoms coverage rather than total elimination.
Read up, print info from rls-uk.org and papers that are relevant for your situation, think yourself of a cpurse of action and discuss ot with your gp after she/he has read the relevant info. I hope things will improve for you. And never hesitate to ask for advice. We’re here to share what we know and have experienced ourselves.
Thanks LotteM. I have already started reducing the pramipexole so will continue to do that. I am grateful for all the advice and any improvement would be most welcome!
- what is your blood ferritin level? The normal range for most people is not sufficient for those of us with RLS. For us, it usually needs to be at least 100.
- what are the daily dosages you're taking for pramipexole and pregabalin?
- I'm concerned that you are taking two opioids: tramadol and oxycodone. Were those prescribed by diffent doctors, and if so do they both know you're taking both of those? I would recommend talking with your doctor(s) about that. It is not usually advisable to take more than one opioid.
Hi, thanks for the reply. I was taking pregabalin and changed to gabapentin. I was creating my profile and added the pregabalin and was going to put 'past treatment' but must have clicked the wrong spot, then got it into my head and put the wrong thing. I've tried to get in to edit it but my drugs etc aren't there???
My ferratin levels aren't nearly 100 and the neurologist said aim for 75 so I shall be doing something about this. I'm not sure what the last blood test said- a lot was happening at the time and I forgot to ask. Will be checking on 3rd.
However, the pramipexole is 5 mg twice daily! Which I see by reading is way too high so am already cutting back. The gabapentin is 2400 mg daily in two lots.
The tramadol is for pain prescribed by my GP and the oxycodone is for RL to stop them when they're too bad, prescribed by my neurologist. It a one off dose of 5 mg daily if required.... Comments?
Once again... I made an error. RL when I'm typing can do all sorts of things so, instead of 5 mg twice daily its 0.25 mg twice daily!!! Does everyone find that when their legs are restless there is also mental confusion/fuzziness/irritation?
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advice on anti inflammatory?
Ferritin level from last blood work
