Are there any of us who have completely given up with trying to find a medication that will get rid of this awful affliction? If so how do you cope with the tiredness. I am feeling so alone at the moment. GP’s really don’t want to prescribe anything new for me. I have had Pramipexole, and suffered augmentation. Then on to Tramadol, now augmenting on that. I asked my gp for something different all that was on offer was Ropinerole.
I am trying yoga, it worked for a few days occasionally, but now has no effect whatsoever.
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Gmc54
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Sorry to hear you are having trouble. Honestly, I have only taken tramadol and before finding this group, I had no idea what augmentation was! I would be of little help to you, except to offer you up commeraderie. Good luck and good sleep be with you on your journey.
One thing that encourages me is that Dr Mark Buchfuhrer, an expert on RLS, believes that every person who suffers from RLS can be effectively treated. It is a question of finding what works for that person. I have a cocktail of medication that is effective at the moment but my neurologist is trying to mess it up by removing the Tramadol. Thankfully my GP doesn’t agree so I sort of remain. I say sort of as the GP has slightly increased the Tramadol to see if that helps with my pain.
I too find solace in that opinion of Dr. Buchfuhrer's. Also I found my GP to be more helpful ultimately than my specialist - not more knowledgeable but more willing to work with me to achieve a solution.
Thank you Jools. Changing my GP is not an option sadly, I live in a small village in Lincolnshire UK. My GP hadn’t even heard of opioids for rls, and took some persuading to let me have Tramadol. It is pointless going back to see anyone at my surgery. I have to learn to live with this somehow.
Changing your GP may not be an option but changing your GPs views on how to treat RLS is an option. You do not have to learn to live with this awful disease without treatment when there are effective drugs that will control it.
I have posted useful links below which I suggest you print off and show to your GP.
Pregabalin is effective for many people and opioids like oxycontin at low dose are also effective. In fact, the only drug specifically licensed for RLS is Targinact ( combination of oxycontin and its antagonist naloxone to prevent constipation). Your GP cannot ignore official advice on RLS from the governing body for health/drugs in the UK.
The US experts on RLS are also of the opinion that opioids are now very helpful for RLS and I have set out links below that you should print off for your GP.
As your GP is so lacking in knowledge and unwilling to educate himself, you have to become an expert and read everything you can and show all the info to him. A useful book ,which you can buy on Amazon, is "The clinical Management of RLS" by Drs Lee, Allen, Buchfuhrer and Hening. It is actually quite straightforward to read, even for a lay person, and you could show it to your GP and suggest he acquaint himself with the current thinking on treatment of RLS.
Until you can persuade him to treat you properly, get hold of magnesium bisglycinate and take at night and ferrous bisglycinate and take every other night.
Get a blood test from your GP to show your current serum ferritin which needs to be above 100 ( your GP will tell you it's normal if it's above 15, but for RLS it has to be much higher). Also, start a vegan diet as that has helped Raffs control his symptoms and it is really helping me too. I was still getting RLS twice every night despite pregabalin and oxycontin but since becoming vegan I now only get RLS 2 or 3 nights a week.
You are not alone and there are treatments that will help.
Excellent advice from Joolsg there. You could not do better. The book she recommends is a medical textbook (but very accessible to a lay person) and your GP would struggle to ignore it.
I now take pregabalin because when I researched it, I found that studies have shown that it DOESN'T augment as the dopamine agonists medications do. It is another group of meds altogether but it does seem to be effective for a lot of people. Google pregabalin for rls. Good luck, you really are not alone if you've found this site.
Pregabalin was very effective for me for some years then the effect wore off. I believe i did augment on it eventually. It appears to be rarer or it may be that it has been used for a shorter period of time and so most folk haven't got to that stage yet. I say this not to burst anyone's bubble as I used to beg my GP to keep prescribing it, long before it was officially known to help RLS ( I took it for the pain of peripheral neuropathy and found the RLS effect by chance before the research had been done ) but just to be aware and take care not to keep increasing if the effect wears off. It also takes several weeks to wean back down from.
It does help many with rls but it is a pernicious drug for some and discontinuance can take longer than several weeks.
I am currently weaning down - not sure I will be able to eliminate it but would like to reduce the dose. It is proving very unpleasant. I reduce by about 10% every few weeks. I went down to 75mg this week and am really feeling the withdrawals - a sense of worthlessness, doom and hopelessness, no motivation, anger and misery as well as intermittent restlessness and general discomfort. I think I will stay at 75mg for a month in the hope of stabilising for a while because I'm not sure how much of this I can take.
Hi involuntarydancer. I am so sorry to hear of your feelings at present. You have been so helpful to me and so many others you don't deserve this. Hope you settle really quickly and I send all kind wishes to you.
Wow, Jelbea, that means a lot. Thanks! I have had a number of withdrawals over the last few years so should be well used to them - really I should get a med and stick to it but am restlessly (haha) convinced there is a better system out there so constantly tweaking and subjecting myself to these unpleasantnesses. The worst aspect of the current difficulties is that my work has taken off in the last few weeks - which is what I have worked towards over the last few months - and now I just can't be bothered to give it the attention it needs.
What horrible effects it is having on you as you cut down. I think pregabalin did something to my mood as well, not just when cutting dow,. although it is marketed to treat generalised anxiety I think it actually caused me to feel anxious or at least when something worrying was going on i seemed to lose my sense of perspective and couldn't view it rationally but just felt panicky. all these meds which affect brains seem to do so much else than just what they are designed for. i hope it all wears off soon.
That is really helpful. DAs were not known to cause Augmentation until years after they were first prescribed and so I am now wary of another drug doing the same. The study on pramipexole versus pregabalin does mention that some people in the study augmented on pregabalin so you are not alone.
I will not increase my dose and will monitor any increase in RLS symptoms.
I agree with joolsg. Following augmentation from Ropinerole, changing Gabapentin and going up to a high dose over time, I was desperate and at a very low point. My doctor, after reading info from this site along with the okay from sleep clinic + neurologist allowed me to go onto Oxycontin which stopped my rls in its tracks. I also take Pregabalin which was added by sleep clinic because of severe sleep deprivation, which has also helped my Arthritis and knee replacements.
It is worth taking info from this site to your doctor, my doctor admitted she knew nothing about the condition and sometimes they rely on patients doing their own research. They can't be experts in everything. I hope you can find something that will work for you too. Wishing you all the best. X
Same here. Amidst my augmentation symptoms my dr prescribed hydrocodone and everything got better fast. It took going to a specialist 4 hours away for me to find someone who would keep me on it as my primary treatment but it’s worth it. Now I have to figure out the sleeplessness part — opiates keep me awake. 😡
I had that problem with them too. Apparently it’s specific to rls sufferers. It’s really difficult. I ended up trying cannabis which is about the most effective for inducing sleep
Yes that can be a problem with them. But I had severe sleep deprivation before taking Oxycontin because of chronic rls to the point of experiencing hallucinations while walking around all night and doing the weirdest things around the house without knowing I done them!! I was shocked when I saw what I had done and what I had got out of cupboards etc. mind boggling! I'm just so grateful that the Oxy stopped my legs to give me rest at least. Any sleep I get now is a bonus thanks to the Pregabalin whether 2, 4 or 6 hrs and shock horror, on holiday last week i slept for nearly 8 hrs - i couldn't believe it 😲 (i wear a sleep monitor by the way) So at the moment I'm a happy bunny. X
So pleased for you. I had the exact same experience prior to starting OxyContin. Hallucinations due to lack of sleep and bruises from falling asleep standing up. It was such a relief to get the legs under control.
Snap, I fell into the fireplace, doors, kitchen table; but the weirdest thing I did after trashing the kitchen and pouring water from the kettle into the toaster was taking the top off a jar of Douwe Egberts coffee and with a sharp knife, removing the plastic stopper, filling it with sugar and putting it back on again???????? When I came to and saw it, I thought, "What on earth is in there??" Then I saw the knife I did it with OMG! My husband was really worried and thought about putting locks on the kitchen cupboards because of all the things I was doing, especially when he saw the bleach out! As I have been know to open what I thought was a bottle of water and take a swig, only to find it was skin tonic YUK! and I did the same with a bottle of cordial!
I could be really wrong about this but my understanding is that it is not usual to suffer augmentation from opiates. Are you sure you are on a sufficient dose of tramadol? Perhaps if you show some of this research to your dr you can get something stronger. I hate to sound like a drug pusher, and they bring problems if their own, but the opiates really are pretty good for this.
I am slowly coming to the view that with rls there is a futility to chasing the symptoms by increasing the dose of the meds. It seems to me that when there is a reduction in the efficacy of the meds it is necessary to reduce the dose rather than increase it. Finding an alternative med or suffering through is then required for a period and then possibly (hopefully) a return to the original medication with newly resensitised receptors.
Continually increasing the dose - whatever the medication - always seems to end in disaster.
This is surely a miserable and confusing disorder. I’d never considered or been told about augmentation; I haven’t been wiling to try opiates due to the fatigue factor - but is it any worse than 2mg of Mirapex a day - whether the fatigue was from the Mirapex itself or for sleeplessness because it wasn’t effective, I’d fall alseep sitting in my chair at work. So now I have CBD with THC, and it works almost perfectly and is getting better as I tweak dose and timing - but I can’t travel with it. I knew this going in, I think I just didn’t expect it to work, so wasn’t ready to think about that issue. The hemp-based CBD sounds so ineffective that I’m not sure it’s worth trying, but that I could travel with. Anybody got any ideas? I hate the thought of going back on Mirapex when I travel, than back to CBD when I’m home. We travel a fair amount...
On the “no meds” thought - I can’t imagine being completely untreated. I think RLS would drive me crazy. I like the idea for Gmc54 of educating the dr as we educate ourselves. I also agree with involuntarydancer that higher doses of meds after they become ineffective (or the “RLS” is getting worse as I was told) seems to be going down a rabbit hole. With all I’ve learned over the years, and here, it seems to me that switching meds as needed/possible, and using things like maintaining a healthy diet, good general sleep hygiene, keeping up with bloodwork, activity at the level that works for you, lowering stress when possible - are all good lifestyle choices in general, and in combination may provide a lifestyle that works even with this crazy, unpredictable, changing disorder called RLS. I’ve had to look at it more like that - doing all I can to relieve my symptoms but basically creating a lifestyle that works around whatever symptoms I have at the time. That’s a tall order for any of us. I’m at the best I’ve been for 40 years, so I can only encourage everyone to keep refining, keep journals so you really know what’s effective and for how long. That’s the best infor for our dr’s, and we can back much of it up with current research.
SO pleased you have found relief with the cannabis, Mona. On top of which, there are so many claims for health benefits from it that it might be doing you untold good elsewhere also (if some claims were to be believed, there is nothing it can't resolve!). Would you consider getting a prescription for an opioid for when you are travelling? Maybe tramadol or oxycontin if you can persuade your GP to it (track down the link to the recent medical paper on opioids in rls treatment - LotteM posted a link recently - and bring it with you).
Shoot, I accidentally flicked the page and lost my response!
Thanks for the suggestion, involuntarydancer, but I really don’t want to start opioids. I may have to, I realize, but I’m traveling next week, so wouldn’t be likely to find a doc and get in and set up before then. I’m not sure how going off them every time I come home would work. I’m starting with a new dr Aug 2, so will go over all this with her, though.
I use the Indica strain. What’s most effective for me - based on this last round of tweaking - is too potent (too much THC) for daytime use but works great at night. I take something less potent during the day.
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