Mm y doctor told me I don't have rls in my arms what do I do I have got it in my arms.

[Cataanddogs]

My doctor told me I don't have rls in my arms but I do what can I do about that.

[Joolsg]

Your doctor is wrong. Not surprised because he won't have been taught anything about it.Tell him to look up rls.uk website and he'll learn it can affect legs, arms, hands, trunk, back, anywhere.

I had it in my arms and face when in Ropinirole but now I'm on better treatment.

What medication are you on? Ropinirole, Pramipexole and the Neupro patch can all cause RLS to move to the arms. When that happens it's called Augmentation and the only solution is to very slowly reduce the drug and replace it with alternative medication.

Read all you can as the more you learn, the better treatment you'll receive.

[Shumbah in reply to Joolsg]

As young single digit child my first symptoms were very embarrassingly at the top of my vagina my hands , fingers , arms , jaw as in gritting of teeth that hard by my teens I was snapping my front teeth off and had to have all 4 crowned .My legs also about 11 .

I was always in trouble for the first very embarrassing symptom which involved me having to physically touch and move my vagina every few minutes all day long. It’s like having a tic.

I would print off peoples stories with RLS in other parts of there bodies.

Feel free to print mine.

[SueJohnson]

You list ropinirole as a health interest on your profile and if you are on it then Joolsg is right. You are augmenting and need to come off it. Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It 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. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor 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. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and 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. 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. 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. But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 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 that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 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. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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 of pregabalin) daily." If you take magnesium take it at least 3 hours before 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 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 at Https://mayoclinicproceedings.org/a...

[Brenda48 in reply to SueJohnson]

Much appreciate your, advice. I have been taking requip for several years and now take one or two in a 24 hour period. Unfortunately I only sleep for 3-4 hours a night if I am lucky and have resorted to asking for help from my surgery and one of the pharmacists suggested mirtazapine. Do you have any knowledge of this as from what I have read it may make things worse plus it doesn’t begin to help for 4-6 weeks and I am at my wits end . I live in the UK so various medications are not available to me.

[Cataanddogs in reply to Brenda48]

I'm on mirtizapine and it helps to get me to sleep but after that it is hopeless it does not keep me asleep all night I still only sleep for a couple to 3 hours.

[SueJohnson in reply to Cataanddogs]

See my reply to Brenda48.

[SueJohnson in reply to Brenda48]

Mirtazapine can make RLS worse for many people. Safe antidepressants include trazodone and Wellbutrin.

[SkyCop]

Listen to Joolsg.... your Dr is wrong. I have it in my hands & arms a few times/ week. It's most likely from Ropinerole augmentation.... My duration, intensity & frequency are all elevated right now. But I used to have it occasionally in all 4 limbs before I was even diagnosed or on Rx.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

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.

[Theonlypetied]

Yeah, your Dr is a knob, sorry, your Dr is sadly mistaken… in my humble opinion and personal experience.

[Madlegs1]

Tell Him, respectfully, that he has no brain.

[Mum007]

I have it in my arms as much as my legs and I’m not on any medication so your doctor is wrong. He’s as well informed as my doctor who says amitriptyline doesn’t make it worse 😡

[Jumpey]

I get ot too inh arms.GP is plainly wrong.

[Thyroid2468]

what does it feel like in arms? I have internal vibrations in my whole body and no doctor seems to know what it is, and the pregabalin and klonopin help with RLS, but not the internal vibrations. anyone else?

[SueJohnson in reply to Thyroid2468]

I have internal vibrations too and they are no fun. Luckily I only have them when lying down or when I first get up but they sure don't help getting to sleep. My RLS is completely controlled by gabapentin, but it does nothing for the internal vibrations. Interestingly I never had them until my RLS got worse and I started taking gabapentin, although not right away and it is not listed anywhere as a side effect. On possible cause is low B12 , but I tried that and it didn't help.

[rls-insomniac]

I also had it in my arms (and legs) when I was on ropinirole and had it badly when I was weaning off it. I just kept flailing my arms around to try and stop the sensation. It's a horrible feeling! Your doctor is wrong!

[Nikos64]

Please consider getting a new doctor. You can also experience RLS in your arms, shoulders and back. The name restless legs is a misnomer I think. Where you perceive it can change with time. This is based on my experience over the years