Hello fellow RLS suffers.
I’m looking for some advice, I’m suffering badly during this warm weather spell. I’ve upped my medication, Gabapentin, walked regularly and soaked my feet in cold water.
Whilst these measures ease the restlessness I’m still have a lot of “jumping” at night.
So my question is this, has anyone tried using a foot vibrating pad? Did it work? Has anyone any other suggestions to help during warm weather.
Thanks.
How much gabapentin are you taking?
Hi Sue.I was having augmentation with Pramipexole, I was taking 1.83 at night. I had an appointment with a neurologist and he has partially moved me off Pramipexole and on to Gabapentin. My current medication is 200mg Gabapentin in the morning, 200mg at lunchtime and in the evening 300mg Gabapentin and .52 Pramipexole. I have upped to 400mg Gabapentin at night currently due to this warm spell.
I am glad you are weaning off the pramipexole. The gabapentin won't fully work until you have been off the pramipexole for a few weeks. I imagine (correct me if I am wrong) that you are taking it during the day because of symptoms from the augmentation. If that is the case once you are off pramipexole you can probably drop the daytime doses and take it only at night. A total of 700 mg is still a low dose even if it were all taken at night, so you could certainly increase the amount you are taking at night. I hope you are gradually reducing the pramipexole as I mentioned to you previously. Did you have your ferritin checked?
Hi Sue,I can’t remember what my Fermin level was but my neurologist said it was fine.
I find this warm weather seems to irritate my legs more, tried putting my feet into cold water,this sometimes works, but am now trying warm water to see if it makes any difference.
What is fine for other people is not fine for those with RLS so you should ask your neurologist what it was. You want it to be 100 or more which helps 60% of those with RLS. If it is not 100 or more. Come back here for advice on what to do. Are you taking any other medicines or over the counter supplements.
I bought the Revitive vibrating pad and it made my RLS much worse.Have you checked your iron levels? Raising ferritin above 100, often 300 can resolve the majority of RLS cases.
Are you taking anti histamines or anti depressants? Statins, beta blockers, PPI meds? All these can worsen RLS.
How long have you been taking gabapentin and what dose?
I notice you were on Pramipexole and only came off it recently. Withdrawal can take months to settle. Also, if increasing the dose or switching to pregabalin doesn't help, you may need to discussow dose opioids with your doctors. Gabapentin and pregabalin sometimes don't work on people who had augmentation on Ropinirole or Pramipexole. Dr. Buchfuhrer believes it's because our dopamine receptors were permanently damaged by years on those poisonous drugs.
Thanks for getting back to me, I’ll give the vibrating pad a miss.In answer to your other questions, my Fermin levels are good.
I had a heart attack 5 years ago and am on statins etc.
I was having augmentation with Pramipexole, I was taking 1.83 at night. I had an appointment with a neurologist and he has partially moved me off Pramipexole and on to Gabapentin. My current medication is 200mg Gabapentin in the morning, 200mg at lunchtime and in the evening 300mg Gabapentin and .52 Pramipexole. I have upped to 400mg Gabapentin at night currently due to this warm spell.
While you're still on Pramipexole, you will inevitably still get augmentation.Until you're completely off the stuff, you will still get RLS.
The statins will also worsen the RLS but I understand that you may not be able to find an alternative to those. I know some people have managed to control cholesterol etc through switching diet and adding plant sterols. Discuss fully with your Cardiologist.
The best thing you can do is get off that .52 of Pramipexole.
You say your ferritin levels are good. Do you know what your ferritin is? What is good for other people is not good for people with RLS.
I have a Relaxis vibrating pad. Made it worse.
I bought a machine years ago that was an older version of the modern vibrator pad....completely useless for RLS, sadly...may be useful for oedema etc but did nothing for me...gave it away.....I have never taken medication apart from herbal Valerian and Passion Flower tablets etc occasionally. I read somewhere on here that using a strap on my legs, putting pressure on them by pulling could help...and it does work...but I also take gentle iron tablets every other day at night on empty stomach...
I bought a Rock and Fit vibration trainer last week and was going to feedback my experience after I’d used it a little longer. However, my initial findings are so far brilliant! Obviously this is a more vigorous movement than a massager with several settings and I’m finding it really effective for helping if I’m not yet quite due medication. I use a very high setting, do knee bends, twists etc but it is quite vicious and may not suit some medical conditions and people. I’m on track with withdrawing from the wretched Ropinirol and horrendous augmentation. I changed Gp and found a sympathetic one who actually read the Mayo clinic paper (amazing!) and prescribed dihydracodeine to help with withdrawal (tried tramadol first but it didn’t agree with me). So, I’ve gone from 3mg Ropinirol to 1.75 (going to 1.5 next week) and upped gabapentin to 1500-1800. I’m on second month of ferrous sulphate (my serum ferritin level was 12) and vitamin D and feel the most hopeful and better than I have in years. I can only praise and credit this incredible site for all your wisdom, knowledge and support - you’ve all collectively changed my life profoundly and cannot thank you enough😊
** I don’t think I replied specifically to Ex Rugbyplayer so have repeated my post to him! **I bought a Rock and Fit vibration trainer last week and was going to feedback my experience after I’d used it a little longer. However, my initial findings are so far brilliant! Obviously this is a more vigorous movement than a massager with several settings and I’m finding it really effective for helping if I’m not yet quite due medication. I use a very high setting, do knee bends, twists etc but it is quite vicious and may not suit some medical conditions and people. I’m on track with withdrawing from the wretched Ropinirol and horrendous augmentation. I changed Gp and found a sympathetic one who actually read the Mayo clinic paper (amazing!) and prescribed dihydracodeine to help with withdrawal (tried tramadol first but it didn’t agree with me). So, I’ve gone from 3mg Ropinirol to 1.75 (going to 1.5 next week) and upped gabapentin to 1500-1800. I’m on second month of ferrous sulphate (my serum ferritin level was 12) and vitamin D and feel the most hopeful and better than I have in years. I can only praise and credit this incredible site for all your wisdom, knowledge and support - you’ve all collectively changed my life profoundly and cannot thank you enough😊
Two things: First: 1500 to 1800 gabapentin is a lot to take before you are off ropinirole. Once you are off it for several weeks, try reducing the gabapentin, because you probably won't need as much. Reduce by 100 mg at a time every week or so. Second: Since you are taking that much, I hope you aren't taking it all at one time. Anything over 600 mg at a time is not well absorbed. The proper way to take it is 600 mg 1 to 2 hours before bedtime. then take 600 mg 4 hours before bedtime and the remainder 6 hours before bedtime. Taking it this way you will probably find you don't need as much. I'm glad everything else is working out for you and that you are coming off ropinirole.
Many thanks for your feedback Sue. I do appreciate it. I should have clarified that I’ve been on gabapentin for 10 years - totally unrelated to RLS and it was prescribed for pain management for a broken femur (pinned). I’ve always been on 1x 300mg 3 times a day and recently increased to 1 or 2 in the afternoon; 2 at lunchtime and 1 or 2 around 8pm. I certainly plan to reduce back to my ‘normal’ dose when I’m through the Ropinirol withdrawal process but am starting with a high tolerance to gabapentin. At the time of my accident, I was prescribed slow release morphine (the pain was excruciating) and was on that for 4 years. It took me nearly 1 year to gradually withdraw from the morphine and THAT is when I track back to when my RLS appeared. I’ve no idea whether there is a correlation with morphine withdrawal triggering RLS or whether it was a coincidence? But I’m guessing I’ll never know!
Thank you once again
I have a Chi machine which kind of rocks/vibrates your legs on 3 different speeds. session is finished you get a pleasant feeling in your head so I think it must activate the vagus nerve somehow. . and perhaps increase dopamine. Sometimes when my legs are bad I put the machine on the end of my bed and do 1-2 5 min sessions. It definitely calms the legs and back (I get RLS up my back as well). My other go to is having a hot bath: going on the exercise bike until my legs are really tired. All these things seem to work to a greater or lesser extent depending on how bad my legs are that night. I use these when I am taking a break from the medical cannabis which I do 3 nights a week.
In reading your bio you said you took 100 mg of gabapentin but it did nothing for you and you stopped because you were afraid of augmentation. You can't augment on gabapentin. And yes 100 mg is an extremely low dose. According to the Mayo Clinic Updated Algorithm on RLS, "Most patients require 1200 to 1800 mg of gabapentin daily." Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know about it including the latest treatment and refer your doctor to it at
Https://mayoclinicproceedings.org/a... Also, have you had your ferritin checked?
Thanks for that - I decided after reading about the severe side effects that could occur in some people to try Cannabis which works quite well so far for me. I do have to avoid alcohol, sugar, junk foods. I make my own meals from scratch using good oils and ingredients and have lots of fresh foods and veg in my diet. So far I am managing to get enough sleep for my needs though I wake up several times a night and have to battle with the demon to get back to sleep. I take gentle iron, magnesium and quite a few other supplements and as I am 73 hold those stronger medications up my sleeve but hopefully I can keep my quality of life without needing them.
The side effects for most people disappear after a few weeks and those that don't are usually mild. severe side effects are rare, You will read about them on the forum because people come here for help, But I understand if you don't want to take it.
Have you had your ferritin checked?
Hi Sue my reason for not taking Gabapentin comes from this article which concerned me.
Gabapentinoids linked to serious hazards, including suicide
The study,7,8 published online in April 2019 in the journal BMJ, examined data on 191,973 Swedish residents who filled gabapentinoid prescriptions in the years between 2006 and 2013.
In that time, 5.2% of them either received treatment for suicidal inclinations or died from suicide; 8.9% unintentionally overdosed, 6.3% were involved in a traffic accident or traffic-related offense; 36.7% were treated for a head or body injury due to an accident, and 4.1% were arrested for a violent crime. The researchers concluded gabapentinoids treatment was associated with:
A 26% increased risk for suicidal behavior and death from suicide
24% increased risk for unintentional overdose
22% increased risk for head or body injury due to an accident
13% increased risk for traffic violations or accidents
4% increased risk for violent crime offenses
Of the two gabapentinoids, pregabalin — which is the newer of the two9 — was clearly the worst, accounting for most of these adverse effects, while gabapentin — an older drug — showed “no statistically significant hazards.”
Stratified by age, the risks associated with these drugs were the highest among those aged 15 through 24, and the risks were dose-dependent, so the higher the dose, the greater the risk. According to the authors:10
“This study suggests that gabapentinoids are associated with an increased risk of suicidal behavior, unintentional overdoses, head/body injuries, and road traffic incidents and offences. Pregabalin was associated with higher hazards of these outcomes than gabapentin.”
As is often the case, the risks associated with these drugs have only become apparent as their usage has increased. Dr. Derek K. Tracy of Queen Mary’s Hospital told Reuters that:11
“While it’s not clear why prescribing of gabapentinoids has grown so rapidly … anecdotally it appears that many doctors regarded them as relatively effective and with a low side effect profile.
As we accumulated more information over time, it has become clear that this is not the case, and most recently there has been a countering drive to try reduce their usage as their harm profile came more to the fore.
nexusnewsfeed.com/article/c...
Yes I get them checked regularly and are all good.
It says "recent research" but doesn't cite the research so there is no way to know why the gabapentin was prescribed nor the amounts that were taken. Many people use gabapentin to get high and use high doses and are more likely to engage in risky behavior, or they use it for pain and use high amounts and if it doesn't work, they might become suicidal. The effect of gabapentin on RLS is different. Yes there is a small risk of thoughts of suicide, but that is more often in people with RLS who aren't taking any medicine. Overdose in RLS patients - hardly, nor violent crime nor traffic accidents nor head and body injures. Search this forum for these. I did and found zero reports except for suicide thoughts in those not taking medicines. Those are most likely associated with higher doses than are prescribed for RLS. Gabapentin has been a life saver for most.
Hello, fellow sufferer, I've got RLS and have tried most ways to ease the nighttime problems, I've got a Revitive massager for legs and feet, its by the side of the bed, I frequently use it from 7 to 30 minutes in the night, I've found if I do 7 minutes then get back into bed I get 7 minutes relief, so you can see where I'm going, I've got Ice Power gel, its the best thing for me I can get a couple of hours, hot rub isn't as effective nither is the CBD rub. The Ice Power I bought over the counter in Lanzarote, its difficult to buy here in the UK. try and get some its not a cure but just another spanner in your toolbox.Good luck, how nice would a solution be, !0
Have you thought about trying gabapentin which can completely control your RLS?
Are you stretching regularly, especially before bedtime? Loosen the the legs. Sit on the bed or floor with legs straight out. Get a towel, wrap it over the toes. Pull for 30 seconds. Stand upright on stairs on your toes, lower your heels, 30 seconds. Repeat. These stretch out your calves. I do this + gabapentin, sometimes with aspirin.
Also, I'm on 300 mg gabapentin 3x daily. A doctor told me to take 2 of those before bedtime. That helps, too.
600 mg at bedtime is a low dose if you expect it to control your night time RLS. According to the Mayo Clinic Updated Algorithm on RLS "Most patients require 1200 to 1800 mg." Check out this Mayo Clinic article which will tell you everything you want to know about it including the latest treatment and refer your doctor to it at
Https://mayoclinicproceedings.org/a... Is there a reason you are taking the gabapentin during the daytime?
I have a Relaxis Pad that I paid $800 for. I found it effective, although it was, more often than not, just easier to take my hydrocodone. Through the grace of God, (and six years of prayer), my RLS has been cured after 20 years on opiates. I would be happy to give you this pad if you give me an address I can send it to. I also have these devices that wrap around your foot and apply pressure to, I guess, an Accu pressure point. The verdict is out because I only used them a couple of times before my legs got better… but I do believe I had some positive results. But the things are kind of a pain because you can’t walk very easy while wearing them. Overall, I would say the Relaxis Pad, which they don’t make anymore, is a better bet. It has 56 vibration settings and a gradual slowing and turning off so you can fall asleep. God bless you and all who suffer from this horrendous condition. (I put my email and phone number down, but as I was closing I was advised against it. At any rate, if we can figure out the logistics safely, I would be happy to follow through from Southern Utah.)
In His Grace,
Rick
Firstly that you for your reply, secondly I am really glad your RLS symptoms have gone, must be a great relief and finally thank you for your kind offer of the Relaxis pad I couldn’t/wouldn’t ask you to send it to the UK.
Sorry I took so long, my wife and I are still recovering from Covid. If you change your mind about the pad, it’s still in good working order, please let me know… although I don’t know how the address thing would work. I would be happy to pay for the shipment if I can afford it? (I paid $16 for a relatively small bag of pistachios the other day… I might have to refinance the house for another tank of gas.)😀
Praise the Lord for your healing. It's all in God's time. I have been praying too for healing and am waiting for healing.
Unfortunately it is never cured, just under control, but I am glad you have found something that works for you.
Yes I did and it did not help. I shook my legs for five hours yesterday. That was a bad night. Started at 5 pm. Finally looked at clock 12:30 am and my legs finally allowed me to go to sleep. I believe the only thing that can heal me is God and He hasn't or isn't going to.
Are you taking any medicines for your RLS?
Yes. One .50 tramadol daily . You responded to me earlier and my levels were checked by my doc and according to her were good. IncubAtor can heal me if it's His will
You need to ask your doctor what your ferritin is. What is good for others is not good for RLS. It needs to be 100 or more. Improving it to that helps 60% of people with RLS. Have you thought about taking gabapentin which can completely control your symptoms?
Thank you I will ask her about it
I prayed for six years and He finally cured me. Doesn’t have to take so long for you or anyone else… I’m adding my prayer to the mix. Please don’t give up… I believe each prayer brings us closer to an intimate relationship with our Father in heaven.
I know he heals but not everyone I still believe he can if it's His will. 🙏
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Hot and cold pads and RLS
