Hi everyone
I have a weird question. Please bear with…
I have RLS. Quite bad. I also ride a motorbike. My RLS kicks in when I’m sitting/resting/driving my car. I’ve noticed though, that this is not the case when I’m riding my motorbike, even when I’m overdue taking my meds (normally 4:30 pm ish).
Cue weird question - Are there any other sufferers who might be experiencing the same thing?
Thanks.
Yup myself also suffers with the same problem . Also I am unable to sleep at night . I use to take medicine at 7 and other at 9 pm . I feel ok in movement and as I sit restlessness starts and I couldn’t take a nap in the afternoon. Sometimes it is unbearable and I feel like to cut my feets
What happens when you ride your motorcycle?
I hear ya. I’ve even talked to my GP about amputation, kind of joking but not as the RLS is so wearing
I don't feel any RLS symptoms when riding my motorcycle. And usually I don't get RLS while driving my car, except on long trips during afternoons when I get tired and have to take a break. Then my RLS can get bad.
I have found that the more exciting the activity, the less problems I have with RLS. A boring movie will trigger my RLS, but an exciting action-packed movie is no problem to watch for a couple hours. Riding my cycle is more intense and requires alertness and keeps my brain active and awake. Driving my car can be boring and tiresome and long drives can put me to sleep. That's when my RLS kicks in. For me, caffeine is the best solution for these long drives in my car. It keeps me alert and prevents my RLS symptoms. Hope this helps.
My sister, who is 56, rides her motorcycle up and down the east coast for days long trips. She has RLS and has said several times that she doesn't get it while on these trips when she riding hours and hours at a time. I suspect it's because of the vibrations and the fact that she's moving her legs a lot more than when she's just driving her car. She doesn't get it often while in the car but every once in a while she will. But so far not at all when on her motorcycle.
It could be that your concentrating on something. I bet if you played a video game or similar you would be ok.
Thank you for an interesting thread. I don’t ride a motorbike but but can imagine this would be an RLS free zone. I agree with comments about driving a car - can be ok but not 100% of the time. I agree about watching exciting film too. Recently a lady posted on this forum that doing something creative helped her and I brought out some long forgotten needlework which gave me a couple of RLS free evenings. Playing cards usually works too. I’m not into video games, but prepared to try. Any other tips? To be honest, I’d give anything to be able to just sit and read or watch something relaxing on tv😩.
Same here! Too long sitting at my desk, on the couch, in a car or on a plane and my legs go nuts. But never on the Harley. I think it’s the vibration.
A friend of mine who has RLS said she was thinking of getting one of those foot vibration plates, but when I looked into it, some people said it either did t work or even the extra stimulation can make symptoms worse. So what does that say? What I haven’t got my head around yet is that the RLS stops the moment I stand up. So is that postural, mental, movement, brain, muscles or what???
I wish I had an answer. Funny that a few of us here have the very same experience of relief while riding. Just as some say a weighted blanket helps but just the mere thought of that makes my knees twitchy! I experience more RLS discomfort when my bladder is full - how does that make any sense? 😆
I have the same experience. In a car it’s bad. On a bike, not so much. Full bladder or bowels triggers it as well.
I’m convinced it has something to do with concentration. Riding requires a higher level of attention and focus than driving does, and I’ve noticed that if I am up with RLS at night, some kind of focusing activity helps a lot… does not let you sleep though.
I have suffered with RLS my whole life. I now find relief with Medical Marijuana for sleeping at night. I also discovered that a very small cup of coffee calms it down. Very odd but it has been working 100% of the time.
When I watch slow moving dramas I tend to experience RLS. But if it's an exciting, action packed movie, I feel fine and don't experience it. I agree with your assessment about driving your motorbike. You are more engaged and I believe the vibrations have something to do with it as well.
I believe what we're talking about here is the effect that heightened mental involvement has on brain chemistry, since that's where RLS starts. Anyone have any scientific data on this?
I am interested in this thread because it appears that so long as the brain concentrates on something, the RLS symptoms are kept at bay ... even during the night, when RLS is the worst. I've learned that during the night, when symptoms awaken me, reading won't alleviate the symptoms but doing something--cleaning the kitchen, sorting papers, etc.--something that requires intentional thoughts and activity--does work. After 15 minutes to half an hour or so, I can go back to bed and get some rest (drug still in my system), even if not deep sleep. BUT! All of this makes me wonder if RLS researchers are "barking up the wrong tree." Is there something in our brains related to mental involvement that causes our symptoms?
Another question: For me at this stage of RLS, the discomfort/pain/restlessness comes in the form of increasing "tightness" of the hamstring (back of thigh) and achilles (back of calf) tendons. I reach a point where I must get up and walk or stretch or do something for at least 15 minutes. I have wondered if I undertake a regimen of stretching every hour during waking hours, IF I could retrain my body (via my brain) so that those two areas do not tighten so much at night. Has anyone tried this?
I do Pilates and my Pilates teacher highly recommends calf and feet massage. which I do myself, to help keep the Achilles, calf and feet more supple and less tight. If you use Red Toger Balm it smells great too!
This is the most interesting thread I’ve read in a long time, all of this should be taken seriously and it would be great if the medical field would look into this further!
Mine starts anytime from 12 noon, if I’m resting/sitting/driving and until a couple of hours after I’ve taken my meds. My wife says my PLMD is bad at the moment but that’s when I’m asleep and I know nothing of it.
My RLS usually begins early afternoon.
I have suffered lifelong RLS basically at night or sitting too long. I have found that a small amount of coffee really settles things down. It blocks adenosine and increases dopamine. I also live in a state where you can get medical marijuana which I use at night to sleep.
That’s interesting because caffeine sends my RLS wild, as does alcohol and sugar. This RLS is a mighty strange beast!
It really is strange for sure. I have been trying different things my whole life. Mine is genetic. I have the same reaction with sugar. Keto diet and intermittent fasting has helped greatly.
Fascinating thread, couple of thoughts I would like to contribute Use of activity to delay RLS onset… I find driving a car long distances is similar to sitting long periods and both will make my RLS.worse. Is the actual driving a motorbike physically more active, more foot/ ankle movement ? And maybe the sitting position stretches leg muscles differently, in a beneficial way? I use Pilates stretches to cope at night, and find adding ankle movements and pressure on the base of my feet helps.
There’s been a lot of research on pain pathways in the brain which can continue even when the source of pain has gone , e.g. phantom limb pain… I wonder if there is a similar mechanism for RLS…..Are activities that use certain parts of our brain are more successful at reducing RLS onset than others? Like pain management, I find that preventing development of my RLS with good timing of medication works best. If something triggers it unexpectedly ( mild sedative during a heart echo 😬 a few weeks ago ) then I struggle to cope
I am so glad I found this blog as my GP refuses to admit I have this condition and believes it’s anxiety. I’m also on HRT (18 months) to see if that helps but to no avail. Can I ask if anyone has the muscle twitches, pulsing in arms too?( I’ve had full brain and spine MRI)
My RLS is mainly in my right leg. Less so in my left leg. Occasionally in my arms. I don’t get twitching but get the need to move them every few seconds. Your GP is a d**k. They need to get with the programme or go to another Dr for help.
Those are definitely symptoms of RLS. You need to change doctors if s/he doesn't think it is RLS. This is what is usually used to diagnose RLS: "All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition." when you see your doctor ask 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 as that is when your ferritin is lowest. 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 transferrin saturation is OK then if your ferritin is less than 75 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 preferably at night 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. 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. Above all don't let your doctor prescribe a dopamine agonist like ropinirole (requip) 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. 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. 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 don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. 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 new 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...
Wow many thanks for this . Just checked my full blood count in Feb and serum ferritin was 78. I am seeing my GP next week so will take this useful information with me and see what they say . I’m willing to try anything at this stage as each morning I wake up feeling exhausted. I do feel I have RLS, it will be a relief to end the constant researching on my symptoms
Yes yes yes this is RLS exactly . Please please can someone look into it and find out why it is only when we relax (or try to) that RLS jumps in. A doctor found this dreadful thing back in the mists of time why has no young PHD student really looked into why we cannot relax and sleep???? There are so many sufferers it would be worth a try
I find that anything that either distracts me or causes me to focus more intently can relieve my RLS. There's some nights that I couldn't sit still with that bouncing both legs against the floor until I started playing a Hearts game on the computer. Within a matter of minutes my legs had calmed down which gave me a temporary respite. I believe the motorcycle requires more concentration than driving a car just because the consequences of a minor mistake can be deadly. So boring car drive might not do anything for RLS but there's no such thing as a boring motorcycle Drive.
buprenorphine for RLS 
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