Hello Friends, My RLS symptoms are significantly worse after exercising. I do weight training in the morning 2x a week and at night have increased symptoms, specifically muscle pain and therefore insomnia. What exercises work for those of you with moderate to severe RLS ?
Exercises : Hello Friends, My RLS... - Restless Legs Syn...
Exercises
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Haydenpup
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Intense exercise can make RLS worse. Moderate exercise can help RLS. The muscle pain is likely from your weight training and the muscle pain could cause insomnia.
I see you are taking ropinirole. Are you aware that up to 70% and some experts believe 100% of people on ropinirole or pramipexole will suffer augmentation and the longer you are on it the more likely that is to happen?
How much ropinirole are you taking?
I’m taking 1 mg at bedtime and will begin weaning off of that July 1. I chose that date because of social commitments prior to July 1
Good luck with weaning off: if you haven't previously read Sue's advice on weaning off slowly do make sure that you look out for it: doctors are sometimes, not always, too cavalier with their advice on this subject!
Thank you
That's good. You won't be sorry.
You may have seen my post that follows but in case you haven't, I will give it here.
First off check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole , reduce by .25 mg 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 it but they are not uptodate on the current treatment recommendations. Pregabalin is more expensive than gabapentin in the US.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [Since you are over 65 and if you are susceptible to falls beginning dose is 100 mg (50 mg pregabalin.)] 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 you are off ropinirole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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 not ask your doctor 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. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up . If you can't get an infusion, let us know and we can advise you further.
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 or s/he would never have prescribed a dopamine agonist atHttps://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(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
As of March of this year my Iron was 127; Iron Saturation 45%; Ferritin 76.40. Nighttime meds are Ropinirole 1mg (not slow release); Iron Glycinate 28mg. 2 capsules at bedtime and Magnesium Biglycinate 200mg 2 hours before bedtime. AM meds are Amlodipine; Lisinopril ; Pavastatin and multivitamin
Statins like Pavastatin make RLS worse for almost all. Nexlizet is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although it doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
If you later take gabapentin or pregabalin you should be closely monitored as statins can raise the bad LDL and lower the good HDL.
Amlodipine is a calcium channel blocker that makes RLS worse for many but not all. Lisinopril is probably safe.
Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
Take your iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption.
Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.
If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after.
Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Thank you!
Is it possible to combine intense exercise with Gabapentin? I an afraid of all the side effects like drowsiness. I’ m an active cyklist and train a lot
Vigorous exercise worsens RLS in most people. You can combine intense exercise with gabapentin, but all that will mean is that you need to take more gabapentin to cover the breakthrough RLS. You want to keep your medication as low as possible to avoid the side effects. It's unlikely that exercise will prevent the sedating side effect of gabapentin. I have been on pregabalin (a very similar drug) for nearly ten years. Having reduced my dose quite significantly in recent months, I finally have energy to undertake more exercise (more in terms of amount, not intensity).
Thank you. What dose are you down to?
Amrob has given you a great answer to your question. I can only add - do your exercises in the morning. My RLS is controlled by gabapentin and I am able to do intense exercises in the morning or at night - I play ice hockey.
Sounds great. If you are able to play ice hockey I should be able to continue with my bike training in the evening🙂
I’ll meet an neurologist next week and will discuss the possibilty to start with Gabapentin.
Beginning dose is usually 300 mg gabapentin. It will take 3 weeks before it is fully effective. After that increase it by 100 mg 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.
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."
If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason . 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 at Https://mayoclinicproceedings.org/a...
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.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate 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, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, C, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
While the beginning dose is typically 300mg, some of us oldsters (73 year old male) get by on much less - I'm happy on 150mg. Why not start at a lower dose and see?
P.S. - my doctor prescribed liquid gabapentin so I can easily adjust up or down. When I travel, I take 100mg capsules, which means 200mg per night. In any case, I still deal with morning grogginess.
Will do - thank you
Thank you 😊
Irregular (i.e. not daily) intensive exercise sessions of any kind are more likely to cause both RLS and general muscular aches and pains than regular, daily, less-intensive exercise - particularly as we get older and bodies are less resilient and take longer to recover.
If I (fairly rarely nowadays) feel incipient RLS symptoms coming on before bed, I find some simple gentle stretching exercises followed by standing on the balls of my feet and vibrating my legs by drumming my heels on the floor for a minute or so works for me. Not so good for anyone living on the floor below though!
(And having said that some people find that using a vibrating plate to achieve the same effect helps, but others that it makes their RLS worse 🤷♂️).
Hayden, how long have you been on the DA? What do you think drove you to it? Were you on HRT or an SSRI? Calcium channel blockers can also significantly worsen the symptoms of RLS (but not the disease itself) to such an extent that a person might be prescribed a DA. Please think about taking the magnesium during the day instead of night. The iron will do your RLS symptoms the most good if taken about two hours before bed on an empty stomach. Do you ever feel your RLS fizzle out about an hour after taking the iron?
I have been on Ropinirole since November of 2019. I had been on Gabapentin for a few months prior but didn’t like the way I felt (drugged). Initially I thought the symptoms were due to back problems so it went untreated for approximately 10 years, getting progressively worse until my doctor diagnosed RLS. I actually do feel it fizzle out after taking iron. I will take the magnesium at day as suggested. Since I’m only on 1 mg, although my body wants more, I have high hopes of getting off of Ropinirole soon. I do have augmentation so that’s why I’m getting off.
Yes, I agree, you will have an easier time than most, but not just because you’re on such a low dose. The calcium channel blocker you’ve been taking essentially does just the opposite to your dopamine receptors as the DA. So while the Amlodipine made the DA less effective and you suffered more than you had to, you were protecting your dopamine receptors and will now reap the benefit. If your doctor can see his way clear to allowing you to go off the Amlodipine for about a month it will make coming off the DA easier. Even if you do nothing else, please have an opiate like Tramadol or Codeine waiting in the wings for a bad night.
Thank you
Has anyone tried cannabis instead of opiates? If so, was it effective?
Cannabis is much more of a wild card. Why not have both waiting in the wings!!!
I don’t have either on hand so I was wondering what others thought before I begin my adventure
Be prepared, is my motto.
I've started cycling about 4mths now. I've worked up to 15km in the afternoon everyday and 30km sat sun , I sleep like a baby and dropped my meds , carnt believe how addictive getting my bike is lol
hi
I’m fairly new here but suffer with severe RLS and benign facilitations that were triggered post hip surgery
I’m working with my physio as I’m finding any kind of exercises triggers my RLS at anytime of day and am getting it in my abdomen and back and sometimes the sensation is around my genitals which is just awful!!
We are doing nerve flossing exercises which are helping reduce the time it takes to go from 100% of nightmarish symptoms to a more manageable 60%
Lots of videos on you tube on tibial peroneal and femoral nerve flossing
Once I’ve been doing this a few weeks if I’m convinced it’s helping a bit I will do a proper post
But has helped massively with a trapped nerve in my neck which had given me ulnar nerve entrapment and an intermittent dead arm (did an ulnar nerve flossing one) as I suffer cervical spondylosis.
Sue and Joolsg gave me excellent advice re medication and I’m back to see my neurologist next week to discuss Gabapentin or Pregabalin although not sure if one is better than the other. So fingers crossed
Hope you get sorted too.
I’m my experience the trick is to do the same amount of exercise every day. Much more or much less than usual triggers a night an extreme restless legs. So when trying to get fitter I only increase the amount of exercise I do very gradually.
Swimming really helps me.
I find it is not so much the heavy exercise but loss of salt, electrolytes and water. Add some extra electrolytes like Salt Stick, drink extra water, take Magnesium glycinate and do post-exercise massage with an msm or other pain cream, preferably with an electric massager. Don’t give up on the exercise before you try this when exercise can give you so much.
As Chris Columbus alludes to I suspect that irregular intense exercise is the worst because your muscles are always on the back foot, so to speak, and they will be more sore as a result. Personally I find if I do enough hard cycling or hill walking to make my legs ache then that becomes the focus of the RLS twitching the next night and often for one or two more. I try to avoid training to my maximum either stamina or strength although that can make improvement a little slow.
I have seen a few bits of advice for older people (i.e. me) along the lines of "less is more", basically do push yourself but not for a long time, or if you are going to do a long session then keep it to 80% of your max effort e.g. a Zone 2 ride. Other articles I've read suggest that the muscle changes in response to hard exercise are triggered within the first few reps which again says don't overdo it or train to failure, rather stop when you are still feeling good. And everyone says that consistency is the key so rather than intermittently giving your body a hard workout, focus on steady gradual improvement and building.
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