Hi, I feel like I have restless arms. How common is that? I am taking gabapentin, only 600 mg at the present time for RLS. Lately I been feeling restless arms several times this week - a new feeling.
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Restless Arms
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Gabapentin can cause restlessness. Is the restlessness you feel in your arms like RLS, that is do you feel an urge to move them? Have you changed anything - started a new medicine or OTC supplement, foods you eat, lifestyle changes like exercise?
You might want to try switching to pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. Divide the gabapentin amount by 6 to get the correct dose which would be 100 mg in your case.
Yes, my arms feel restless like RLS. I’ve started taking probiotics recently. Thank you for your advice. I know walking helps with restless legs but I’m not sure what to do with restless arms - planks? 
Very strange!
What's in the probiotics?
Lactiplantibacillus plantarum 299v - 85 mg and Indian frankincense phytosome - 125 mg
It may well be one of those ingredients causing you problems.
Perhaps try stopping or changing variety for a few weeks??
Thanks.
Arms are worse because its harder to put counter pressure on them.
I had my iron recently tested. Transferrin saturation 7/23 21%, 3/24 34%, now 22%. Ferritin 7/23 50, 3/24 60, now 77. Not sure why saturation went down. I have been taking iron glysinate 50 mg everyone other day since April and regular iron prior to that. I increased my iron to 75 mg starting in September. Added probiotic for awhile too. Any ideas? I don’t think my health insurance will do iron infusions. Is elemental iron better that glysinate iron for absorption?? Thanks.
The 75 mg iron bisglycinate is 75 mg elemental iron. Keep taking the probiotic with the iron. I wouldn't be concerned about the transferrin saturation. You are slowly raising your iron although certainly a lot slower than I would expect. Ask your insurance if they would cover it. If not and you can afford it you could pay for one yourself. In the UK they cost £800. I don't know what they cost in the US but my guess is it would be in the same ballpark. Otherwise perhaps increase the iron to 100 mg or thereabouts.
Thank you. Good to know. I appreciate your advice. 😊
This has also happened to me in the last few months. I have noticed though that scrolling on my phone or typing one fingered makes it worse and I have to lie on my arms for a little relief, Codeine helps though and also with legs. Also pinching muscles in arms for a while helps a bit..
Hi I have had restless leg syndrome since I was a small child. Now I occasionally get it in my arm. Apparently it can get worse with age. I take pramipexole which is great but it does have a down side. The side effects are real.
You are suffering from augmentation if it is going into your arms and need to get off the pramipexole as it will only get worse.
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 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. (Pregabalin is more expensive than gabapentin in the US.) 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 beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole 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 or magnesium-rich foods, 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 nor calcium-rich foods 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 as this will help your withdrawal. 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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist 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 (estrogen) including HRT, 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.
Hi your information is very informative. I was on gabapentin to start with but after a time it was no longer working so my GP prescribed pramipexole. It does work. I ran out of them once and omg my RLS was unbearable. I have had RLS since I was 5-6 yrs old. The foods that cause my restless syndrome are anything containing tomatoes eg ketchup,fresh tomatoes etc. Mayonnaise also sets it off. I have had tests for iron. My mother had RLS in her legs. My dad said he had it . My sister has it like me . Both in our feet .I think it's just something I have for life and manage with the current medication. Thank you for your reply
If the gabapentin worked at all but then didn't, it was probably because you didn't take enough. The maximum amount is 3600 mg. although above 1800 mg one would switch to pregabalin so it could all be taken at one time. It is your choice obviously. But since you are suffering from augmentation you would be wise to get off it and try gabapentin again as the longer you are on it the worse it will get, the harder to come off it and the more likely gabapentin and pregabalin won't work as your dopamine receptors will be damaged. And there are other things you could try if you were off pramipexole that would completely control your RLS. Do you really want to be suffering for the rest of your life?
You said you had tests for iron, but did they test your ferritin, because that is what is important for RLS.
Lactobacillus plantarum 299v no plantibacillus, has the ability to help absorb iron is you are iron deficienct.
I took gaba for sometime as well but know how to ward of rls completely with this protocol.
NO SUGAR even fruit.
No dairy, yeast, gluten.
Tumeric, goldenseal, oregano oil
Vit d, b12, iron
Lactobacillus plantarum 299v
Spirulina.
After a month or so, i can eat whatever i want and the rls goes away foe months while i enjoy the things I previously obstained from. What a relief! When it creeps back in im I know what to do. No Dr. Buchfuher for me!
Hi 1, what type of iron do you take and time of day? Thank you!
At one point I was taking iron carbonyl from a brand called natalist (for pregnant women but I am not pregnant). Carbonyl iron is not hard to the stomach and does not have digestive issues.
Then I was taking iron combined with Lactobacillus Plantarum 299v ( not lactoPLANTIbacillu) that is combined with iron in a low dose suppliment called Good Belly.
Good Belly’s whole line it made up of the 299v strain, but many of their drinks/foods have natural flavor which can cause inflammation which causes rls. So i only take the suppliment.
This 299v strain helps you absorb iron. You may not be deficient in iron but your body is just not absorbing.
I take the iron every other day at night with food.
Also if you start this protocol also try intermittently fasting as well.
You need to fight the inflammation that is causing the highjacking of dopamine, which causes the dopamine disregulation, which causes the iron to not be absorbed in the body.
Rls is an inflammatory response.
Yes!!! I’ve read that severe calorie restriction will up-regulate dopamine receptors. In everyone, not just us with RLS. And over-eating will down-regulate the receptors. Plus, I find eating any food later at night will trigger RLS right then and there. Not quite sure why. I think the gut wants to go to sleep and there’s a gut brain connection that then provokes RLS symptoms.
And yes, more inflammation = more hepcidin = less serum iron (not to be confused with ferritin). Serum iron plummets at night (in everyone) and since we with RLS have so little “brain” ferritin we rely very heavily on that free floating serum iron. We don’t need inflammation/hepcidin compounding the problem.
I need to take iron every night, which raises that free floating serum iron, and relieves my RLS . If I took it every other night then I would only have relief every other night. Glad you are RLS free!
Wow! Thank you for that further info! I appreciate the insight and I wish you the best on your journey! Will copy and past this into my notes
I’m going to do a separate post about this.
Have you had your ferritin tested? 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 and 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. I
Checking out GoodBelly's iron it only has 4.2 mg iron which is very low. Normally one needs 65 mg of elemental iron to raise one's ferritin, assuming you need to. from your ferritin results.
If you do need to raise your ferritin I suggest you take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Also take Lactobacillus plantarum 299v as it also helps its absorption which you can take without having to take Good Bellys..
Take it every other day as more is absorbed that way, 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 (or magnesium rich foods), calcium (or calcium rich foods) 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 turmeric as it can interfere with the absorption of iron. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
More insightful info! Yes, I think my iron is good and my rls is goes away with my protocol. The good belly suppliment with iron will not replace a proper dose of iron if you are deficient. I jusy get it mainly and sometimes the non iron one because its the easy supplement to find Lactobacillus plantarum 299v and thats the only probiotic they use. If the probiotic don’t specify that it is the 299v strain or the Lactiplantibacillus 299v (from my understanding does not help to absorb iron.) I wont take it. Thank you for the further info!
If you just want the Lactobacillus Plantarum 299v, on Amazon in the US the Good Belly costs $19.99 for 30 count for the 10 billion bit you can get Swanson brand for the exact same thing without the vitamin C and folate for $9.99
Be sure you get your ferritin number as doctors will say you iron is good when what is good for others is not good for those of us with RLS.
I agree, good belly is expensive and I am excited to try this alternative! Thank you so much again!
Thank you for that reminder, I should definitely get my iron tested.
I also just found this
“ however, the Lactobacillus plantarum 299v® strain is by far the most widely researched member of the species. As of April 2020 L. plantarum has been officially reclassified to Lactiplantibacillus plantarum subsp. plantarum so the full strain name may also be referred to as Lactiplantibacillus plantarum subsp. plantarum LP299v® (Zheng J et al., 2020).”
I have it in my arms too.
I can tell you firsthand it can spread to your chest and your arms …in my case it was horrific. A simple google search will tell you that almost 50% of rls sufferers or get this. I suggest you Google before you ask these people because you will get all sorts of misinformative answers along with the good ones.
If you’re interested in curing rls and don’t know about iron and ferritin. Let me know.
until I started Gabapentin I would get restless arms as well as restless legs. Sometimes in my legs and arms together or different combinations. (EG One leg, one arm). I found that the Gabapentin stopped both most of the time. I take 600mg at 7pm and another 300mg at 10pm with an iron tablet (ferrous sulphate) which works for me.
I may have told you this but you want to take your larger dose of 600 mg closer to bedtime and then 300 mg 2 hours before that for maximum effectiveness.
Thanks Sue, I’ll do that.
hi I get rls in my arms and legs, it’s a slightly different sensation in my arms but equally as uncomfortable and occurs in the same situations. I didn’t always have it in my arms and started after taking some meds for my legs. Might have been ropinerole. I was on gabapentin as well and pregabalin for a time. I am taking codeine ant the moment and it seems to provide relief most of the time although it’s a balance getting the right dose… sometimes nothing seems to work. I did buy the therapulse contraptions recently but did not have relief. Might take longer for these to work or more than likely they just don’t work for me. Thinking of trying acupuncture and other traditional Chinese medicines but don’t have much hope. It’s a horrible condition.
I have it in my arms too. I’ve had RLS in my legs for over 30 years but the arms only started about 7 years ago. I’m on small dose of Subutex sublingual tabs (0.1mg) which I take at 9pm at night which works really well. Occasionally if the RLS breaks through in my legs and/or arms during the night I take another 0.1mg. What I used to do to counteract RLS in my arms before I started meds was: 1) stretch arms out - my husband pulls each arm for 5-10 secs and repeats as often as necessary 2) place hands on window shelf or counter top, step back so arms are straight, bend at hips so your body is at 90 degrees really feeling the stretch in your arms 3) plank 4) place L arm out in front, palm facing down, put R hand under palm and pull fingers up and back, bending at the wrist so you feel the stretch in your forearm, repeat on other arm 5) when in bed I place arm up under pillow so my head is putting weight on it, once it becomes numb/pins needles RLS stops and I bring it back down 6) as 2 above but this time bend elbows like doing press up and straighten arms v slowly feeling the tension in the muscles 7) pinch muscles in forearms and/or pound them 8) rotate arm from shoulder in big circles forwards and backwards v slowly - this only works if you make the biggest circles possible really feeling the stretch in each muscle in your arm 9) in the gym I hang from the high bar and it’s great relief in the arms. 10) sitting on my hands (eg in a confined space like theatre or cinema) in a way that the wrists are bent so you feel the stretch going up the arms. Please be mindful that I’m not directly recommending these exercises for you - I’m not a doctor or physiotherapist. I’m just sharing what works for me. I hope you get relief
Thank you for the detailed information.
I had that too, several years ago. My doc got me off gabapentin—you must do that slowly under the guidance of your physician, or you will experience withdrawal—it’s not easy to manage alone. Then have your doctor put you on Pregablin (Lyrica). I was on 100 mgs 3X’s a day. I’m now on extended release 150 mgs twice a day. I take with Tramafol 300 mgs 3xs a day. This combo really works. I no longer have RLS in my chest or arms.
Occasionally when I’m over tired I get a mild case in one or both legs below the knee . When that happens, I use Magna Life’s Relaxing Leg Cream (purchased at Walgreens or CVS, or best price online). I spread it liberally on one leg or both, knee to ankle. Let it dry (about 15 minutes). It works like magic—the symptoms just disappear for the rest of the night. This cannot be used in lieu of medication though. It’s not greasy and has no odor.
The most important thing is to take the Pregablin & Tramadol doses together, 7 hours apart—I do 9 AM, 4 PM, and 11 PM. Now that I’m on Extended Release Pregablin, I take it with my 9 AM & 11 PM doses.
Very important: If you forget to take even a single dose, for say 4 or 5 hours, you will go into withdrawal. Then you must take that missed dose immediately and wait it out to correct itself—usually 2 or more hours (cold sweets, stomach discomfort, RLS in legs, torso, and arms—so set an alarm for all 3 doses and try not to miss one. It’s very unpleasant. I have taken one extra 50 mg. Tramadol pill and hour after the missed dose if the withdrawal symptoms have not stopped. That usually corrects it. Just DON’T MISS A DOSE.
I wish you all the best. I hope this works for you. Message me back if you have problems or questions.
Barbara: Bganim
Thank you for the detailed information.
You only need to take pregabalin 1 to 2 hours before bed as one gets RLS at night. Doctors will prescribe it that way because it used to be only prescribed for neuropathy unless you have that too.
I had that too, several years ago. My doc got me off gabapentin—you must do that slowly under the guidance of your physician, or you will experience withdrawal—it’s not easy to manage alone. Then have your doctor put you on Pregablin (Lyrica). I was on 100 mgs 3X’s a day. I’m now on extended release 150 mgs twice a day. I take with Tramafol 300 mgs 3xs a day. This combo really works. I no longer have RLS in my chest or arms.
Occasionally when I’m over tired I get a mild case in one or both legs below the knee . When that happens, I use Magna Life’s Relaxing Leg Cream (purchased at Walgreens or CVS, or best price online). I spread it liberally on one leg or both, knee to ankle. Let it dry (about 15 minutes). It works like magic—the symptoms just disappear for the rest of the night. This cannot be used in lieu of medication though. It’s not greasy and has no odor.
The most important thing is to take the Pregablin & Tramadol doses together, 7 hours apart—I do 9 AM, 4 PM, and 11 PM. Now that I’m on Extended Release Pregablin, I take it with my 9 AM & 11 PM doses.
Very important: If you forget to take even a single dose, for say 4 or 5 hours, you will go into withdrawal. Then you must take that missed dose immediately and wait it out to correct itself—usually 2 or more hours (cold sweets, stomach discomfort, RLS in legs, torso, and arms—so set an alarm for all 3 doses and try not to miss one. It’s very unpleasant. I have taken one extra 50 mg. Tramadol pill and hour after the missed dose if the withdrawal symptoms have not stopped. That usually corrects it. Just DON’T MISS A DOSE.
I wish you all the best. I hope this works for you. Message me back if you have problems or questions.
Barbara: Bganim
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Also: Do Not let your doctor put you on Ropinerol or any kind of dopamine agonist. They will send you into augmentation in a year or two—a very terrible experience!!!!
I have restless arms and so do my family members who have RLS. It helps me to walk just like it helps my legs.
Good to know. Thanks.
I must be a freak, I have only had restless arms, never restless legs. It presents the same way as RLS. The real life saver for me has been pushups. I do as many as I can just before bed. The idea is to get your arms nice and tired. When it starts to hurt/burn too much I stop. It is very important to breath while doing them. In going down and out coming up or vise versa, whatever works for you. 1 pushup = 1 full breath, this allows you to do more which of course helps.
Thanks for the tip. You are not a freak, just special. 😊
I have had it in my whole body for many years. It doesnt matter what meds I’m taking. My dr said 5% of rls patients have it this way. My ferritin is way over 100 and I take 100 mg pregabalin 5 x a day and tramadol as well at night.
Sounds miserable.
I experience it in all my limbs, but more often in my legs. When it's in my arms it feels so much worse, and is so debilitating.
i often have RLS in arms and chest in addition to symptoms in my legs. To me this usually indicates that I need an increase in dose or iron infusion as the symptoms present on arms as itching and/ or stinging sensations. Usually after I get an iron infusion they go away. I had them very bad when I was suffering augmentation from Pramipexole. Maybe you need to increase your meds.
I had restlessness in my arms and back and even in my wrists. But that was when I developed augmentation with pramipexole.
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