I've had severe RLS for over 20yrd. In my late 50's not and otherwise healthy. Is it common to have it in one limb at a time.? I would say 80% in the left leg. But will switch to my right or even my arms . Blood work always comes back as normal. As a child ,I would wake with cramps in my feet. Would that be related?
My Rls . Is it unique?: I've had severe... - Restless Legs Syn...
My Rls . Is it unique?
Written by
Sleepdodger
To view profiles and participate in discussions please or .
62 Replies
•
Yes that is normal.
Welcome to the forum. You will find lots of help, support and understanding here.
Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.
When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.
Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip), Neupro patch (Rotigotine) or pramipexole (mirapex). They used to be the first line treatment for RLS, but no longer are because of the danger of augmentation.
Instead ask your doctor to prescribe gabapentin or pregabalin. (Pregabalin is more expensive than gabapentin in the US.) Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. 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. (You don't need to split the doses with pregabalin)
Most of the side effects 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 (200 to 300 mg pregabalin)."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). 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 up-to-date on it at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen , dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Just to update as I lay in a hot bath at 1:15 am. Lol.. I have started to decrease my mirapex by . 125. For the last 5 days. Managed to see my doctor with the info I got here. He seemed reluctant at first but as he researched as we spoke agreed with my concerns. So.. not to bore... But my ferritin is at 242. He told me not to take any iron supplements as it wasn't needed . I am to continue to try and lower my med intake . And for the life of me I can't recall the name of the new prescription but I can't take it with my present. He first suggested an abrupt change over but then told be to try to get down to just one .25mg before the switch over. He said it will be rough until the new med builds up in my system to which I asked for possible doctor notes if I miss time at my work. My blood work looked good except low in vitamin D. For the bottom of my heart . Thank you for all the advice and support. Now someone please put out that full moon tonight.lol
I am pretty sure he prescribed pregapolin(spelling?) but I haven't picked up my prescription yet . Will tomorrow.
Pregabalin
That's great but I would reduce by only one-half of a .125 mg tablet. And yes that is a good time to start the pregabalin but don't just stop the pramipexole at that point because the hardest drops are the last ones.
I''m glad he tested for Vitamin D as low Vitamin D can make RLS worse
Hello Sue. Hope I'm not being a pest... So I have been tapering off my pramipexole ( mirapex) for 2 weeks. Quite honestly. My Rls has actually been pretty good. I have consciously stayed away from alcohol and not fighting sleep to keep a pattern. So if I feel sleepy even early ... I take advantage of it. Tonight is my next tampering... I'm a little concerned with pregabalin which my doctor prescribed.. he wants me to be off pramipexole completely before I take it
That's great that it has been pretty good so far! It takes 3 weeks for pregabalin to be fully effective so you want to start it 3 weeks before you are off pramipexole. You already have the prescription so you can do that.
You can show your doctor this if needed that says up to 3 weeks to be fully effective - rls-uk.org/medical-treatments
Do you think there is any chance that if I get off my meds , I could possibly go without pregabalin? I kno not is a stretch but I so want to be in medicated. Is that a pipe dream? I know you don't know my health...
Oops I meant to say hoping thatI Could be non medicated .
Since you had RLS before you started any pramipexole and your ferritin is fine your RLS will go back to what it was before you took any medications unless you were taking something then that makes RLS worse and have since stopped it.
Can you post your blood results? 'Normal' for general population is way too low for RLS.
Thank you so much. I've been on mirapex for 20 yrs. I often said that I believed it worsened it but I can't get relief without it. I've tried to whine off of it but without success. My blood work has in the past showed normal iron levels. I do eat quite well. But have tried a gluten free diet in the past . Exercise, and many alternative medicines . Nothing in the past ever made a difference. I will listen to your advice and read more throughly. It is wonderful to be on a forum like this . We have a family history of rls but mine is the most severe
• in reply toSleepdodger
Hi Sleep, are you on an SSRI or a similar drug? That’s usually what drives people to a DA in their 30s. You’re clearly pre-disposed to RLS, but 30s is young to begin a DA.
Oh dear. That's a huge problem. 20 years on Mirapex means you will DEFINITELY be experiencing drug-induced worsening (augmentation).Please look at RLS-UK website and the section on Augmentation. There's a withdrawal schedule under 'useful resources'.
You will need to slowly reduce Mirapex by half a 0.125mg pill every 2 weeks. Go slowly and ask for a low dose opioid like 50mg tramadol or 30mg codeine or 10mg oxycodone to settle the severe withdrawals at each dose reduction.
Ensure you raise serum ferritin above 200ųg/L via iron pills every other night OR iron infusion.
Start pregabalin or gabapentin about 4 weeks before the last dose of Mirapex.
And join rls.org to get access to free webinars & latest research & help groups & RLS experts near you.
Once off Mirapex you'll realise how severe the drug was making your symptoms.
Most of us have been in your position.
Omg . Thank you so much! I'm so appreciative of this . I will make an appointment with my doctor and share all this. Sony unthink I can reverse the severity?
Definitely. Thousands of us have done so on this forum.I went from 38/40 on the IRLS severity scale to 0/40..
I never experience RLS now. I take 0.4mg Buprenorphine.
Others do well on gabapentin or pregabalin. Some are med free after going through withdrawal and then getting an iron infusion.
Your doctor needs to read the Mayo Clinic Algorithm and the new American Academy of Sleep Medicine Guidance.
Mirapex is effectively relegated to 'end of life' scenarios now by the top experts.
Spend a few hours reading all the posts headed Pramipexole or Ropinirole and you'll see the answers are all the same.
Most doctors aren't taught anything about RLS so are unaware of the VERY high rates of Augmentation anc Impulse Control Disorder. Many people have lost homes/ careers/ relationships to gambling or Impulse spending. Overeating is common as well.
But you need to be aware that you have to go through a brutal withdrawal first. Hardly anyone escapes it. But those 3 or 4 weeks of hell are worth it because your RLS reverts to what it was before you started Mirapex. And then the replacement meds (gabapentin, pregabalin or Buprenorphine) will cover the evening & nighttime RLS.Also look up relacs.com an excellent website by Dr Andy Berkowski. He explains why augmentation happens and what drugs work.
Hello. Everything looked good except vitamin d. Ferritin was 242 he told me . Everything else was apperently good
Serum ferritin levels can be falsely high due to inflammation or if you took any iron pills in the 48 hours before the bllod test. But 242 is a good level and they won't do an iv iron infusion.You should supplement with Vit D3 (& take vit K with it to increase absorption). In the winter months 5000iu pills are advisable.
And do set aside 3 or 4 weeks free of work/ social engagements for when you drop that last Mirapex. You'll get little to no sleep for weeks & will not be able to function.
Also ask a friend or family member to stay up with you for the first 3 nights. If cannabis is legal where you are- get some. It can knock you out for 30 mins and that will help get you through.
There's a withdrawal schedule on RLS-UK website (RLS-UK runs this help forum) under 'useful resources' which tells you what to expect.
Good luck.
I agree 100% with Joolsg. Let me give you my usual advice which repeats some of the things Joolsg said but also adds some things.
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole (mirapex) reduce by half of a .088 [.125] tablet)(ask for a prescription of these if needed) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The gabapentin or pregabalin that I mentioned in my first reply won't help you while you are on pramipexole. Start it 3 weeks before you are off it. After you are off it for several weeks you can start increasing it as I advised above.
Do get your ferritin checked as improving it can help your withdrawal.
Where do you live in Canada? I may be able to give you the name of a doctor who is knowledgeable about RLS.
Hello. Yes I am in Canada. I managed to get a doctor's appointment this afternoon. I have already started to cut my dose .I will speak to the doctor about possible time off while I have withdrawal.As my job is quite stressful and I won't handle it without sleep which worries me but hate to miss. For once I have to put myself first .
Hi Sleepdodger, I may have missed it in the replies, but regarding your question if it is common to have RLS in one leg at a time and then it seems to move to the other leg or a different area. I’ve wondered the same thing and haven’t read anything about that happening to others. It always seemed so strange to me how it would be so terrible in my right calf then move to my left calf and then to my right thigh and other areas. Just wondering. Good luck to you. I see you have gotten some excellent advice. There are so many caring and understanding people on this site .
Oh Shoot, I now see the answer to my question was in the first line of Sue’s answer to you.
Thanks again to Sue, she is so helpful and knowledgeable!
It never hurts to repeat it and in this case to see that others experience it too.
Yes I am over whelmed but the support . Finally getting answers . I've tried my own research but never got much that helped .
Sue and Jools are incredible for all the wisdom and support they offer us. Incredible!! 😍
Very common. Happens to most RLS patients.
Thanks Joolsg! You’ve always been so helpful over the years. I have always wondered about it. Didn’t make any sense how it can just “jump” to my other leg or thigh. I thought I must be the only one!
No. It's the usual pattern. Most people seem to get it in just one leg at a time and then, as you say, it jumps to the other leg.Even when in severe augmentation and withdrawal, I still only had it in one leg at a time.
And my right leg was always the 'prominent' leg.
We should do a survey!
Hello. If your doctor has prescribed Mirapex for 20 years, like most physicians, they are likely not educated on RLS developments. My suggestion is that you join the Restless Leg Foundation. RLS.org They offer medical studies and white papers you can print off and take to your physician. Your physician will appreciate and respect the information coming directly from trained experts.
Good luck to you. Getting off Mirapex will not be easy. I was on Ropinerole for 15 years and stopping it was one of the hardest things I have ever had to do. However, I have taken low dose Methadone for 5 years and am RLS free. Best of luck to you!!!!
Thank you. I will try again. I've got days without sleep. I used to be able to function on fumes. But now as I am older it hits me harder. I've been on vacation this week .and seriously rls has been better. I am normally on my feet a lot .
mine is quite often only in my left leg and always starts there ,
Yes same! I am the least superstitious person there is . But there is definitely something with a full moon.
Definitely noticed this - I spend more of the night wandering round the round with bad RLS symptoms when the moon is full!
See my previous posts on this. Now I'm on Buprenorphine I don't get ANY RLS so the full moon doesn't worsen symptoms.
healthunlocked.com/rlsuk/po... over 4 years ago.
hello, restless legs / cramps / jerks are caused by the brain not the legs themselves - so it makes sense that the brain sends messages to one area at a time causing the symptoms. That’s why we have it in one leg but then it will move to the other… and then sometimes an arm…..most people seem to have one side that is affected more… mine is the left side and I am left handed… so I’ve often wondered if that is why. It would be a fascinating topic if it wasn’t so debilitating!
I am left handed as well.
I experience this too, it's predominantly in my right leg but does switch around constantly from around the knee area to my mid thigh, upper thigh, arms and left leg about 30% of the time. I use compression bandages to help with the symptoms so it means I'm constantly pulling them off, up, down, doubling up where it's particularly severe in one location, who needs the gym!
I tried electric impulse massagers. Hoping it would work but I found it worse
My laugh for the day - who needs the gym, 🤣🤣🤣
Good morning Sleepdodger😊
Yup, I switch tracks during the night!!!
Usually starts in the right leg, that’s what wakes me up, then moves across to the left… then back and forth. Sometimes in my right arm but strangely that can be even before I retire.. but only the right arm and “thankfully” it doesn’t persist.
I, as mentioned on this forum, and Sue did have a giggle about this observation from another poster who mentioned bananas…
I digress … I find eating a biscuit, bowl of cereal, or bananas (in this other members case) … find it eases my suffering… almost like feeding the brain and keeping it content so I can get some much needed shut eye..
I also find a mug of hot chocolate before bedtime works for me… BUT exercise doesn’t… even if I walk in the mornings. IF it’s a longer walk ( not strenuous ), then I will suffer that evening.. boy will I suffer.
“One size definitely does not fit all!! But like you I am so glad I found this forum”.
I don’t post often but find comfort from others who are in the same boat.
Keep safe my friend 🙏
I concentrate on eating a low carb diet. Avoid gluten as my son is gluten intolerant and it is beloved to be genetic. In the evening when I have bouts of rls ... I end up eating .. trying to get compfort
If you are low carb anyway, try upping your red meat intake (or experiment directly with carnivore). Doing so helped me immensely -- allowed me to wean off my mirapex completely and go drug-free. I didn't have an "after" ferritin test, but that's almost certainly the mechanism.
Yes, Iget RLS mainly in my R leg. And interestingly I discovered recently that my eldest brother, who gets bad RLS, also gets it mainly in his R leg! One wonders if that is pure coincidence or arises from the genetic/familial link- have we both got a trigger in the same spot in our brains?
My eldest bro has lupus . It has attacked his pancreas and is now diabetic. He has rls now in his 70's. We worked together for years and he saw first hand my own bouts. Not with all that he also has rls.he takes twice the dose of mirapex as I which I was shocked .
Talk to him about augmentation.
My RLS has plagued me for as long as I can remember and is mostly centred around my knees. Like you it usually occurs in one leg or the other, rarely both at once. If I’m really agitated then I get it in my arms/shoulders too. It’s a nightmare. It affects me during the day on occasions but mostly in the evenings and around bedtime. I’ve tapered down Ropinerole to 0.5 mg due to augmentation but not sure what to change to now. Interestingly, I was admitted to hospital with a small bowel obstruction earlier in the year and after 3 days of not eating plus a complete clearing of my system, when I was discharged home I had no RLS symptoms whatsoever for almost two weeks. It was bliss. It made me wonder if there was a link
That's great that you have gotten down to .5 mg.! Gabapentin or pregabalin. Start it 3 weeks before you are off ropinirole. If you need I can tell you how to take it as it's been awhile since I told you.
Thank you, I will. I’ve had a few other health issues which have distracted me from my goal.
You have had a lot of good advice. I just wanted to say yes I get it in one leg at a time. Get up walk it off go back to bed and the other one starts. Do wish they would do it together as I might then get a bit more time in bed!
Thank you everyone for all the comments . I feel connected to this group already. Already started to cut down on my meds with me luck
• in reply toSleepdodger
Hi Sleep, you really need to tell us what other non-RLS meds you are on? They could be making your RLS way worse than it has to be and we can offer RLS friendly alternatives. It might also make coming off the DA way easier
Sometimes mine is in the left leg and sometimes in the right leg. I can never anticipate which leg it will be. I also get it in my arms, hands, and shoulder.
Mine always has started in my left leg. Welcome to the group
I have had RLS my whole life. I would never use prescription drugs. I have had great success with keto diet and 10mg of medical marijuana tincture before bed. I am also in the group of people that benefits from caffeine. Right before I need to sit long, a show or plane ride I will have a cup of coffee or espresso. I was thinking of testing for iron, but it's not a regular iron test it is a full iron panel which shows ferritin levels. Apparently it should be over 100 and saturation between 20% and 45%. I do better on iron rich foods so I may be low.
my RLS starts usually afternoon in left leg then later into my right leg. My RLS only starts if I forget to take two Pramipexole tablets at 4pm afternoon. I take two again at 8pm and they work well.
Do be aware that augmentation happens the longer you've been on Mirapex and thd higher the dose. If it stops working- never increase. As Dr Winkelman says, that's like 'pouring gasoline on the fire'.Here's his article.
You are taking the maximum amount of pramipexole so do not increase it.
Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron and it has been found that suffering from augmentation can lead to painful RLS which you don't want. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...
Be aware of the symptoms of augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Not what you're looking for?
You may also like...
Is it RLS?
Hi I'm wondering if anyone has similar symptoms to me and if anything is helping them?
After about...
RLS is ruining my life!
I have had RLS for as long as I can remember. I am 40 now and you would think I would have made...
RLS Ruining my life
Hello, new to the site. I'm from a small town in USA. I have had RLS as long as I can remember....
my RLS is ruining my life
hi,
My rls started 11 or 12 years ago and I started taking pramipexole 0.88 around 2021 at first...
RLS or Is It?
This may not apply to many people but maybe if it helps 1 person it's done it's job.After spending...
My RLS Story
RLS is ruining my life....
RLS in my hands?
Is this RLS? 
RLS is there hope?
