I have been suffering from Restless Leg Syndrome for over two decades now. This horrible affliction used to come and go. But as I age, it has not only became permanent, but also more and more severe too. The sensation in my limbs was hard to explain to most people and even to some medical practitioners who are not familiar with the condition. Many times my complains were callously dismissed as psychological. This disease affected my overall health. Lessened sleep quality and quantity led to deteriorated lifestyle. My lowered concentration level and ability to retain important matters in memory have affected my performance at work. My behavior and attitude were not spared either. I slowly became easily irritable with situations and factors that I used to be able to handle like nothing.
Finding this group promises hope. But, boy, it looks like lot of back reading. But, hey, maybe that will help me fall asleep faster too, who know, eh? LOL.
I am currently on Pramipexole, btw. It does not help much. It just makes me drowsy on odd times of the day.
I have been at my wits end for a while now, just waiting for the straw that breaks the camel's back.
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BoiKat
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Have you thought about coming off pramipexole and switching to gabapentin since pramipexole is no longer the first-line treatment for RLS? Up to 70% of patients will suffer from augmentation which believe me you don't want. If it worked for you before and is no longer working, you are already augmenting. Augmenting is when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. Pramipexole used to be the first-line treatment which is why so many doctors prescribed it but they are not up to date on the current treatment recommendations. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't at
Https://mayoclinicproceedings.org/a... Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach and preferably at night. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it interferes with the absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets To come off pramipexole, reduce by .125 mg every 2 weeks or so. You will have increased symptoms. You will suffer and may need a low dose opioid temporarily to help out with the symptoms. But in the long run, you will be glad you did. On the gabapentin, beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin
Welcome. You say you've had RLS for 2 decades & are currently on Pramipexole. Were you on anything before?Dopamine agonists have an augmentation rate of 8% pa cumulatively. So the overwhelming majority will experience severe worsening of their RLS while taking them.
Read the pinned post on augmentation and consider reducing slowly.
Every RLS help site is full of people experiencing Augmentation and the only solution is to get off dopamine agonists.
Read all you can as doctors are not taught anything about this disease.
BoiKat-you've come to the right place to end your suffering! Just follow the advice of these 2 experts here so far, and it will change your life!
I am so sorry that you have suffered all these years-definitely sounds like augmentation. You gotta get off the DA's and onto something new. You WILL actually sleep again.
I just met with my pulmonologist this week since he follows me post-Covid and we discussed how my RLS of 25+ years has become severe now to the point that I will need to switch to Methadone. I am currently on Mirapex and Carbidopa Levo along with Gabapentin and none control my spasms with any regularity. I have already done withdrawal from Mirapex two years ago and it was brutal due to an inept neurologist who insisted I do so cold turkey. My new neurologist who I will meet the end of May is also a sleep specialist and I feel confident that along with collaboration with my pulmonologist and PCP will be able to wean me off of the Mirapex and Carbidopa and monitor my Methadone usage - at this point my RLS is considered 4+ level which is fairly severe and my options are more limited. I am going to get my Ferritin levels checked tomorrow which will help guide them with more accuracy and based on those results I may have iron infusions done which my lung specialist feels will show results very quickly.
Unfortunately, as we all know, what works for one person does not work for another. All we can do is continue to educate ourselves, make certain our medical "experts" are truly more knowledgeable then we are about treatment modalities and keep records of what works, what does not, when we go on and off of meds and try to not cry about all the nights we don't sleep and all the days we can't stay awake. My biggest fear at this point is the fact that there are definite signs that it is familial - I had an older sister with it and another one who has slight signs of it. Now her daughter is showing signs and it is progressing. Her daughter has 3 girls and I have 2 and I pray none of our children have to suffer as we have.
Glad you have such good docs on your side. Other good news is that the methadone will make it very easy to come off the Mirapex. The switch is easy and you don't suffer during the transition and withdrawal phases.
As for your kids/nieces-most of us feel fairly hopeful that new treatments will become available in the next chunk of years-in time for them to have the right info, the right doc, and easier solutions. But even now-make sure they get their ferritin way up and/or get the iron infusion. I feel if I had done that first, I would never have taken the DAs and would be fine now. Or fine with natural solutions.
Most of us suffer so much more with uneducated, egotistical doctors who won't learn, floundering on our own as to what we should try next, not having access to the right drugs, and opioids being unrecognized as a viable solution and the stigma and addiction fear issues attached to getting them.
But, things will change, eventually, and we now have the top RLS doctors fighting the good fight.
They can find out of they are genetically predisposed to RLS by joining 23andMe and then joining 23andMe+ (costs $169+$29). If they find out they are not, it will relieve a lot of worrying although of course they could still get RLS.
My 23 and me results show I'm not genetically predisposed to RLS which confirms what I knew. It's caused by scars/demyelination in my spinal column from MS.
Hi, just curious have you ever had back surgery? My rls has worsened since developing spinal stenosis…..wondering if surgery may kill 2 birds…..so to speak
No. In my case the scarring is in the spinal cord itself. In your case it may help as the spinal cord may be compressed by the vertebrae.Hope it helps.
I am controlling my RLS without the use of medicine. I have eliminated alcohol, tea (contains caffeine), Coffee, Chocolate, also things like Tiramasu which contains a little alcohol, vinegar, coka cola of all varieties, sour fruit juices and all sour fruits. I sip hot water every 20-30 minutes during the day. It worked for me. Previously I was woken with tickling or twitching muscles in legs and sometimes my whole body up to 5 times a night. Hope you find a solution that works too. I sympathise with your experience. It's exhausting. Good luck.
I am controlling my RLS without the use of medicine. I have eliminated alcohol, tea (contains caffeine), Coffee, Chocolate, also things like Tiramasu which contains a little alcohol, vinegar, coka cola of all varieties, sour fruit juices and all sour fruits. I sip hot water every 20-30 minutes during the day. It worked for me. Previously I was woken with tickling or twitching muscles in legs and sometimes my whole body up to 5 times a night. Hope you find a solution that works too. I sympathise with your experience. It's exhausting. Good luck.
There’s many options that can help you. I’ve had it for 50 yrs now! The doctors didn’t believe me for years and said I was too young. I started medicating about 15 yrs ago with just 1 Ropinirole at 9:30p and it put me to sleep. After a few years it wasn’t enough so the Dr added Gabapentin. I currently take 2 Gabapentin at 7:00p. They do not make me sleepy. Then I take 1 Ropinirole at 9:30. It no longer makes me sleepy either. It works for me. It’s key to take your medication before you get the symptoms and keep the same schedule. I have alarms that go off on my cell phone and my Alexa daily for reminders. I’m 69 now and have had to move my pill time earlier but it’s ok because I don’t get sleepy. I’ve noticed that if I have to take a temporary medication like an antibiotic it will mess me up for a few hours in the evening and I have to stand up a lot but it goes away before my bedtime. It’s a never ending game and you have to continue to be one step ahead of it. Good luck!
I am glad it is working for you. Since you have been taking ropinirole for 15 years and haven't augmented you probably never well. However I would never recommend one start on ropinirole as up to 70% of people with RLS will suffer augmentation.
Sue, I have suffered augmentation and I had no idea that ropinirole was so bad until reading all that you wrote above to BoiKat. I want to stop taking it. I certainly don’t want to get worse. I too will have my ferritin checked. In your opinion, if I slowly eliminate my 1 mg ropinirole then I can just go from my current 600mg of Gabapentin to 900mg of it on my own. I just need to take 1 pill 4 hrs before bedtime and the other 2, 2 hrs before bedtime? I appreciate learning so much from you! Thank you!
What you're describing sounds exactly like augmentation from your dopamine agonist (Pramipexole). And I agree with what SueJohnson recommends.
There's an overwhelming scientific evidence that treating RLS with dopamine agonists (DAs) results in augmentation - your symptoms get worse over time, you increase dosage, than symptoms get worse, over and over, resulting in some reversible and some permanent damage to your dopamine receptors. I know how you feel, I was there last year, but don't despair, you can get better! The good thing is that you came here.
Most of us experienced the same thing. It will be a slow withdrawal. It takes month and it sucks. But if you can get your GP to prescribe Pregabalin or Gabapentin it will help. It takes about 3 weeks to feel any positive effect from this type of medication and it has some side effects which are more intense at first. From personal experience, Pregabalin started being very effective at around 200-300mg taken before sleep.
If you've been on a high dose of Pramipexole for long, if you could get an opiate prescription from a sleep specialist, like Methadone, that would be of tremendous help. Seeing that you're in Canada (same as me), if you're not already in contact with a sleep specialist or waiting for an appointment with one, you're looking at about 1 to 2 years on a waiting list before getting there. Since I've been on a low dose of Methadone (5 to 7 mg), my sleep has improved dramatically and I've not felt the need to increase dosage since I started.
Another thing that might help while coming off Pramipexole is cannabis oil taken orally. Most people find that an Indica strand with an equal balance of THC/CBD is the best. CBD alone generally don't help RLS and THC alone can cause anxiety. Since you're in Canada, you can find that legally in any weed shop. If you want I can send you more info about the strands that helped me come off Pramipexole.
Also, I'd recommend printing this scientific paper before going to your GP, it can be of help since they're the latest guidelines for RLS treatment:
Silber, Michael H., Mark J. Buchfuhrer, Christopher J. Earley, Brian B. Koo, Mauro Manconi, John W. Winkelman, Christopher J. Earley, et al. 2021. “The Management of Restless Legs Syndrome: An Updated Algorithm.” Mayo Clinic Proceedings 96 (7): 1921–37. doi.org/10.1016/j.mayocp.20....
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Interested in opinions. RLS for me is a nightly nightmare. Been on Pregabalin up to 300mg. GP said I have depression...
Still having success (no RLS for almost a month now) with B1 supplement and celery juicing.
Hi I have been having trouble with my legs for years now,
Has anyone else had RLS all their lives, or a very long time? What coping mechanisms have you learnt?
I cut all processed foods, especially wheat and now my \"All Over RLS\" is completely gone.
