RLS IN MY ARMS

[Pampuma]

Does anyone have 'RLS' in their arms? About the past 6 months or so, when I sit down to relax for the evening, my arms act just the my legs do. I can't keep them still. I have to move, rub stretch, get up. I have RLS all the time, not just at night. I take pills 3 times a day. but they don't seem to completely take it away. I either take them too early, too late they say they can't give me more than that. I would be sleeping all the time..... DAaaaaaa I'm not sleeping now decent what's the difference./

[ookla]

Which pills are you taking? Wild shot in the dark here, but if I had to guess, I'd say one of the dopamine agonists (either requip or mirapex?). Once my RLS symptoms spread to my arms and shoulders, the only thing that's been effective in getting rid it is tramadol and oxycodone. Once I stopped taking the DAs, the new arm symptoms pretty much went away and my RLS went back to its "normal" routine. I still get the arm symptoms every now and then, but 5 mg of oxycodone usually knocks it out in about 15 minutes... 10 mg, if it's a really bad night. I have rls all day like you and I'm supposed to be taking 15 mg oxycodone three times a day (gets rid of all my symptoms completely for 3 to 4 hours), but I feel really sick an hour after taking that much, so I've been sticking with 5 to 10 just to take a bit of the edge off just enough not to go crazy.

Good luck, sincerely hope you can get your augmentation under control. Having it in the legs is bad enough, but when it spread to my arms, I thought I discovered a brand new ring of Hell! So I totally feel for you.

[Very_Sick in reply to ookla]

I am totally with you here. I too have to take double pain meds at times just to take edge off and I lie on a hard floor to cut off sensation but constantly turning so i get my relief a bit on both sides. When one side of body feels a bit better the other side is raging pain and then I flip over again for hours. It is a living hell is right with lupus, sjogrens and fibromyalgia. My rheumy hasnt a clue and thinks its only me. So glad that they have these forums as I am losing my mind. I just want out of this house and a life or maybe just sleep would help me see life in a different way. Soo alone with this at night that I get panic attacks when everyone else is sound asleep and I feel I am dying alone. God Bless you all!!!!

[MATTIELUKE in reply to Very_Sick]

Wow! Do you like your doc and have confidence in him/her? Are they helping? Do you live in a city or a small town? I am thinking it would be helpful if you could find a face to face support group. I am all over the place with RLS, chronic insomnia etc. I am making very slow progress but I am progressing with a great doc. No, my symtpoms will never go away. When the symptoms kick in I really feel I don't want to live to live this. However, there are people who have found a way to cope (with the right medical professional and support outside of the medical field). I wish you the best and I pray you get some relief.

[123098]

It's awful I call it hysterical dancing especially in bed the doctor gave me some pills not working then my daughter told me to take iron tablets midwife suggested them to her ,

[Hidden in reply to 123098]

Hi 123098. If the iron tablets help will you let us know. I take an iron (ferrous bisglycinate) capsule at night and most definitely get relief with it when my RLS is acting up.

[Hidden in reply to 123098]

You may find this interesting:

biomedcentral.com/1471-2466...

[123098 in reply to Hidden]

Yes have read it the illnesses. I have is RA and I have read RLS is common with that I also have bronchiectasis again if the research is correct then lack of iron could be contributing factor to les.I will let you know if iron helps

[Very_Sick in reply to Hidden]

I love this site. Seems to me that more of us in the UK are more aware and knowledgeable than in the US here. More doctors are aware and care it seems to me. I have had 8 different rheumys since I moved to Colorado 16 years ago and I swear every time they put me on a med for a symptom I get worse. I am now only on plaquinel and afraid to try anything else as I dont ever get relief and seem to get worse. You have doctors that seem to be wiser. Love this forum and thank God I came across this as it makes me feel I really am not as crazy as I can get when I am in horrific pain from all 3 auto immune disorders flaring at once. God Bless everyone

[Pippins2 in reply to Very_Sick]

Hi,how do uou get on with Plaquenol? My daughter takes it and I eondered if it has any effect on your RLS! Thankyou

[Very_Sick in reply to Hidden]

Omg I cant believe this. I am severely aenemic and am on iron supplements. Not one doctor has referenced that it could be the cause of my whole body RLS. Thank you. You are all so knowledgeable in the UK. God love you.

[Hidden in reply to Very_Sick]

Iron is tough to absorb from food, let alone a supplement. I believe unless the supplement is broken down it won't get absorbed. The only form I found that is broken down is iron bis-glycinate. You can get it at a health food store or Whole Foods and is called "Easy Iron" by Country Life. If you take one tablet at night (about an hour before bed) on an empty stomach you may get a good night's sleep as I do. Plus it should help with the anemia in the long run. Keep us posted.

[Pippins2]

Hi Pampuna,I remember last time you posted you told us you are taking 12mg per day of Requip Are you still taking that dose?Most experts now recommend no more than 1mg oer day,2 absolute maximum,The 12mg is getting into Parkinson dosage,Your doctor like many sadly are unaware of augmentation and this is what your symptoms appear to be,You need to be referred to a Neurologist as you will need help getting off that high dose of Requio,You will continue to get worse whike ever you are taking those massive doses,Your symptoms will be severe when you stop taking it and you will need strong pain meds to help you do so,Print out some information from RKS -UK website and take it to the doctors with you.

[blueeyes5262]

%0 to 100 mgs of Tramadol,works well for me..Others don't like it,I swear by it..(Not a narcotic)..

[blueeyes5262 in reply to blueeyes5262]

50 to 100mgs...per 10 hrs ,for me..sometimes can go longer..Works fairly soon,if I don't let the RLS get ahead..!!!

[Pete-1]

My RLS started in my left arm / hand. Some time later I started taking Pramipexole (Mirapex) as a treatment of Parkinson's disease. Now I just get a few RLS twinges in the evening. If I stop taking Pramipexole my RLS goes bonkers with twinges up both legs and down both arms every 15 seconds for a while then variably every few minutes then back to every 15 seconds.

I assume you are taking a similar drug, Dopamine agonist. These are notorious for making you sleepy. but only for a day or 2 with each increase of dose.

I take "modified release" tablets now which I have to take 1 a day, each tablet is a 24 hour effort so it doesn't matter when you take it.

[Gonzo123]

Hi, I am on Rotigotine Patches know as Neupro patches which seem to work for me as I also get it in the arms as well

[Hidden]

42% of RLS sufferers has symtoms from the arms. If you are on a dopamin agonist try to lowen the dose, it helps many.

[Trubs]

Yes, I have it in my arms, legs and torso! I am taking Mirapex (pramipexol) slow release tabs once daily of 1.05mg. I had been getting some break through with this but, because I was getting very severe cramps all day and night long in just about every muscle, the Dr put me on a low dose of muscle relaxant. For some reason this has stopped the breakthrough and I am quite happy on the present dose of Mirapex for the time being

[Hidden]

I agree with those who are saying you are having augmentation Pampuma. It wont get any better til you get off that med which i am also guessing is a DA.

[attiqchaudhry]

Hi have you tryed Naporoxlin.

I have very bad RLS but l went to my doctor gave me 2 tablets a day 500mg a day .

IT Shoould help.

You can email me on

[e-mail]

[Very_Sick in reply to attiqchaudhry]

What is this drug you speak of. I cant get relief. Was given a script for requip and hate meds even tho I feel I am in hell I read the side affects and I am very sensitive to meds. I am an enigma as I have been told by docs for 40 yrs only one that reacts to meds in ways they never heard of. So sick and tired all the time.

[Windwalker]

Pampuna, With a lot of us, with RLS, it extends to our whole body. When I forget my meds or some times when it hasn't kicked in, I feel like I am coming out of my skin. If I couldn't find relief I don't know what I'd do. I'd go crazy for sure and after that who knows!

[Hidden]

Yes I do Feet , legs, arms , hands And face so your not alone

[Hidden]

Sounds like you have RLS 24/7/365 and nearly whole body RLS in the evening. You either have an extreme case or are taking a medication such as an antacid, antihistamine, certain heart medications, diabetes drug or antidepressant? Even with conditions that tend to go hand in hand with RLS I don't see symptoms 24/7/365. It's only with medications (especially those that are taken twice a day) that I see consistent symptoms because they are taken every day. And every day and night that you take an RLS unfriendly drug is a day that you will get RLS. With co-morbid illnesses there tend to be good days and bad days.

[Very_Sick]

Yes I do!! It is awful and just as bad if not worse than the pain from lupus and fibromyalgia. You are the first I have come across that gets this in both arms and legs all day and night. I started this a year ago and have tried everything. Going nuts with it as it is a new symptom after 40 yrs of SLE and Sjogrens Syndrome and 12 yrs of fibromyalgia. What has your doctor prescribed? I dont want any more meds but I am so exhausted and cant sleep ever. The moment I relax is when it starts up. I literally roll around on a hard surface now for about 3 to 4 hours until it subsides enough to exhaust me more and sleep for about 2 hours. God Bless you and I am so sorry you too have this. I have asked many on Lupus Community and Lupus Survival and as many people that suffer with the many symptoms I deal with day and night this is one that no one else gets in both their arms and legs just their legs.

[Hidden in reply to Very_Sick]

Very sick, you may want to try a stability ball, slightly deflated, to sit and watch tv at night. The mini motions that you have to make to stay on the ball is the same as walking, in terms of RLS, only you're sitting :). You might also try resting on something similar to a slant board with feet higher than head. Once again your brain senses the need for coordination and will release dopamine to coordinate movement. That is why people with RLS get relief from standing and walking. Our brains release dopamine to keep us balanced and coordinate movement. That release of dopamine gets rid of our RLS in an instant. The stability ball and the slant board should do the same for you. Lastly, one person on here swears by a teaspoon of cream of tartar each night. Cream of tartar is pure potassium and taken in high enough doses seems to cause the release of dopamine. Two things though, potassium can be a stimulant, so even though your RLS goes, you may be awake. Also, a full teaspoon exceeds the recommended daily allowance for potassium. One half teaspoon is more equal to the RDA. But one half teaspoon may not be enough. Another person on here swears by a litre of tonic water. That's a lot of tonic water but something to think about if you can't handle prescription meds. Always discuss with doctor when you try something new.

I know some people with fibromyalgia who take melatonin. Melatonin will make your RLS worse so I hope you are not one of those people. Good luck.

[blueeyes5262]

Tramadol,works wonders...(Not a narcotic) Don't get dependent ,on opiates,you don't need them!!..Oxcycodone,is not the answer,,Then you'll have a drug addiction ! Also ,if Marijuana is legal ,in your state yet,it is also ,very good for RLS...If not,,,try some marinol,a pill form of Marijuana!..

[Hidden]

Not everyone on the forum lives in the USA... So, marijuana is not legal here in any form.

[Hidden]

When members give out info on what to try and take for RLS relief then PLEASE do not just run out to buy it. Do your research, ask your doctor. What someone else takes, uses etc etc, may not be for you. It could make things worse for you.

[kdun]

My Dr. tried me on everything, and nothing worked. The only thing that saved me is "Oxycodone" I have to take 3 per day @ 5 mg. each. The odd day I need to take 4. My Dr. says that they are fine for me because I am using them as a painkiller and not to get "HIGH" They were a lifesaver for me I was getting to my wits end with this RLS.

[JimA5810]

Yes, I know what you mean. Not only my arms and legs, but my whole body gets into the act. it makes my whole body stretch. I've started calling it RBS restless body sydrome. I've gone through several different meds gabapentin, Tramadol, neupro currently on norco. So far only sparatic results.

[tolindalee]

I see Dr. Christopher Early at Johns Hopkins in Baltimore. I've been in two of his studies and he currently has me on Methadone 5mg twice a day. This is not enough to get HIGH and it works wonders on MY RLS. I have it throughout my whole body, with an onset in early childhood. In my twenties, it migrated from my legs to the upper torso and arms. It was horrible and before I found Dr. Early, I was suicidal. The agony was literally driving me crazy as I couldn't sleep or sit still. When RLS spreads it should be called something else because people don't understand how miserable it can make a person. I've been on the same dosage for 15 years, it never has to be adjusted, unlike all the other medications, and I've tried them all. Dr. Early see's patients from all over the world because he is one of the few that truly understands this condition.

[Cindy0510]

Thanks for your post! I now see I am not alone in this but reading it does not make me feel any better as there seem to be so many people suffering the way I am with no relief in sight. I have been taking way to much tramadol for way to long now. I promised my family I would get off of it. But now that I am not taking it anymore my RLS is everywhere and not even .5 of mirapex is doing anything. But now that tramadol has been classified a narcotic no docs want to give you any and they all look at you like your crazy and just seeking opiods. I just don’t know what to do now and need some sleep!