Research on Restless Leg & Body Syndrome, RLS/RBS

Just joined. Challenged for years with a form of Restless Leg Syndrome called Restless Body Syndrome. Feels like an electric charge through my torsu, arms and hands, can last for hours. Looking to others for support and research. I'm frustrated with how little doctors know. I'm a writer with a plan to bring awareness of this night-time life-altering disease to light. Looking for others who can help me by offering new and affective treatment information for RLS/RBS, coping skills, and how to find physicians who understand how to help.

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  • Alot of people can suffer with all over RLS. Its still called RLS even though all your body is suffering. I am asking you if people comment on what they can tell you to help etc, are you thinking of using what they say in some type of book..?

  • I may, depending on the information I collect. I am a published author of healthcare books using art for healing. But now of course I'm involved in my own experiences with RLS and appalled at the lack of information out there . If I do write a book or articles, I would never use anyone's name or personal information without their written permission.

    Barbara

  • That's what I wanted to know. We have had a person on here previously who just took peoples comments without asking and posted them to their own Facebook page. It caused a big problem. They were intending to also write a book. Thank you

  • I've had 3 books published which were based on the personal stories of individuals who were using art to heal from cancer, diabetes, heart disease, etc. I still have all the written releases from each person. I also gave each of them copies of the text containing their stories and comments for their approval prior to delivering them to my editors. I know how important it is to honor the confidentiality of others. I'm on this site to learn about my own condition, to receive support, and if I can be of service to others struggling with this condition about which little is known, then I will have helped a little. Thank you for sharing your concerns.

    Barbara

  • You will gain much knowledge on RLS from the forum. The first thing you need to do is take care of that high dose of Ropinerole. :)

  • Thank you but the question is the How? How do I take care of the overdosing of Ropinerole? Even my physician doesn't know what to do with it. If you or someone could help me with some suggestions, then I can go to my neurologist with those. I know I can't just jump into those lower does when I am on a 12 mg ER of Ropinerole that I know. Advice needed soon.

  • Look on the post... not an either/or you have commented before on that post and you will see where i have given you some info o what you need to do. No you cant just drop your high dose down, just like that. Go and see what i have said. and others.

  • The reason you are having all over symptoms of RLS is because you are taking 12 mg of Requip! You have augmentation x

  • Thank you for your reply. I think you may be right about the overdosage. How would you suggest I cut the dosage down safely? I will speak with my doctor of course but wondering what your thoughts were. Thank you so much for your thoughts.

    Barbara

  • just saying I dont take this drug and I have it all over? Chris

  • Christine Richards. I have full body RLS too and I don't take that drug either.

  • See my reply to Christine Richards and to you. :)

  • People can have full body RLS without being on a dopamine med. We are just talking about worsening of symptoms when the dose of a dopamine med is too high. many things can cause RLS to worsen, like taking the wrong medication that appears on the " no no" list. Antidepressants that are SSRI's or tricyclics can worsen RLS, over the counter meds for colds, allergies and SLEEP with Diphenhydramine in them can make RLS worse for 99% of us. We are not saying that his drug class only can cause full body RLS,. We are talking about how high of a dose she is on and augmentation in the context of RLS is only ONE reason for full body RLS or worsening of symptoms.

  • can you tell me what medication are you taking? My sister is only taking 50micr of repinarole & 1 tramadol, she is going spare, she has just rung me up,(CRYING)its in her arms,body.legs, in fact its all over.

  • I take 12 MGS. Of ropinirole ER w/100 mg of tramadol, and 600 mg of gabapentin all at 4:30 PM.

    At bedtime I take 600 mg of gabapentin and 100 mg of tramadol. It works most times, but when I'm overtired or stressed a full body presentation of RLS comes on. It can last 2 to 8 hours. If I take one, two or 3 mg of Ropinerole--not ER (extended release) right away as recommended by my neurologist, I can usually reverse it. If I can't, then sometimes I've had to take one low dose Vicodin, again w/ my doc's recommendation. I'm sorry to hear about your sister, the full body episode is a horrible experience. That's why it's so difficult when doctors don't understand what you're going through and why I've turned to this site to get support and more information. Thank you and my best to you and you sister.

    Barbara

  • The wolves are circling Bganim. So here you are taking everything you can including vicodin plus gaba plus tramadol and still getting full-on restless body. I see from another post you're even taking ferrous sulfate twice a day during the day to no avail. Don't feel bad the ferrous sulfate never worked for me either, probably because it doesn't cross the blood brain barrier. And what's the point of throwing pain killers at an anemic brain?

  • Hello tree light, you are a bit behind the times. If this is a current response of yours above, you have replied to a one month old post. With the help of the knowledgeable folks on this site, I have stated the process of titrating down off my overdosage of 12mgs ER Ropinerole. I'm now down to 8 mgs with the help of ferrous Bisglycinate w/OJ. See my most recent post. I've had no flare ups, or augmentation and no Vicodin. All is well so far -- no circling wolves now.

  • There are three people on here who are trying to conclude that it is the tramadol and gabapentin that are helping you not the iron. Thus other people might be dissuaded from trying the ferrous bisglycinate. I want to make sure that does not happen.

  • I said a combination of everything could be helping, since Bganim was on TWELVE mgs of Ropinerole. I NEVER have said do not take iron. All I said was it will not help some people that much if they are coming off a Parkinson's dose of dopamine meds for RLS. There are always exceptions, and I have NEVER said, again, do not take iron. Merely said that she is on meds that will help her thru Dopamine withdrawal. I feel as strongly as you do about MY point. IRon is fine, but alone it cannot do everything for everyone. AND, we cannot let THAT happen, without people knowing about the higher than needed doses of dopamine meds. iron helps to transport the dopamine thru the spinal canal, and there is NOT a thing wrong with that. I am just saying what i know to be true, and you are saying what you think you know is true, and actually both the iron and the tramadol are going to help. It was the Ropinerole giving her full body RLS. There is soooooo much literature on that, it is hard to miss these days. The RLS Foundations have been doing webinars on augmentation, also on iron infusions, so they are covering it all. AGAIN, no "wolves are circling" here, but I have the right to make my point just as you do. Again, I am BEGGING for a PM from you so we can discuss this. We are not really that far apart in our thinking. But, I know more about augmentation, and you know more about your iron, so there is no reason why both alternatives cannot be combined. Right? :)

  • Iron first. Still no sleep due to RLS let the drugs roll. Next night take iron still have RLS take drugs always smallest effective dose. Can't get complacenton either iron or drugs. I took berberine today and will continue to see if my 3 to 4 times a week RLS goes.

  • So you have RLS 3 to 4 times a week? I only get it 3 to 4 times a MONTH. hmmmmmmmmmmm

  • Just pop along and read my comment again. What was my comment..? Dont make things up. Not fairies tales from you but brothers grimm.

  • There are more than THREE people, trust me. You do not see what goes on behind the scenes, tredlight. We have NEVER said NOT to take iron IF you need it. I think it is a good combination therapy, and have said so many times over the last few years, but ONLY if you NEED the iron. Again, iron may seem like it would not be a problem at all. All natural is not all "safe". I am constantly telling people to try the iron AFTER they are tested. if you think we are the only 3 people on here that find issues with your advice, you are very mistaken, tredlight. I am not here to argue, but also am a fan of real news and real facts when it comes to RLS. Has your iron stopped your full body RLS since your dopamine antagonist experiment yesterday? What did you take to try and open up your receptors?

  • Its horrendous, I havent had any help from Drs, although its better in the day, because I can keep moving, but when you want to relax it wont let you, so broken cat naps, make you suicidal. Send my love to your sister. Could be a drug she is on. A hot bath helps for a little while, tight socks up to the knee, helps, although I hate them, watch Tv try and take her mind off it, put cushions under arms and legs, if she has bingo wings like me, it helps to add something in arm pit, to ease the socket away from the body, never get cold, hot water bottles hor electric pads that you can move around the pain, electric blanket on bed, never get into a cold bed, but once in switch it off, dont over heat feet. Also if you over do it in the day it will more than likely be worse. at night. Lots of pillows in bed. After hours of struggling, I found myself desperate, I drank alcohol, I hate it, but it did help a little, its not something I would have all the time but, when you are desperate you will try anything. I am Joe Bloggs, just a sufferer who empathises with other sufferers. Take care my hearts with your sister. People dont understand, my family have no idea what its like, and because they cant understand, they get frustrating. Please stay strong for your sister, the most important thing goingthrough this, is empathy. Has your sister got other illnesses? because this condition, magnifies those as well. Chris

  • thanks for your reply Chris, but my sister does a lot of walking &she has put it down to this. Alcohol is a NO NO it is for me as well,I've just returned from a 2week holiday in Tenerife with my daughter & all I drank was orange & coke it was horrible. I do like a drink occasionally, but 2wks on orange & coke, its a laugh. I realized when I got home why my legs were all over the place it was the caffeine in the coke, I never never thought about it till I read on here its one of the things to avoid. She is defiantly going to try the other things you've said, I no what you mean when you say people don't understand, because after going to bed & being laid for 10mins my legs will start so have to get up & walk about, my husband seems to think I've got myself into an habits by getting up,(I have to stop up till the RLS goes of might be for a couple of hrs)then I go to bed, but my legs are still at it, so eventually I might fall asleep about 4.0/5.0 o'clock in a morning, then I'm falling asleep all that day, I just wish that my husband new what it was like.

  • I sympathise these husbands havent got a clue, do they honestly think we enjoy no sleeping all night, Yes the walking does it for me, the more I do the worse it gets in the night. My family say the same, its a habit, like heck it is. My daughter says if you can sleep at 7 in the morning you can sleep at 11 at night, but it doesnt work that way, after you have rocked yourself back and fore, stamped your feet, jumped just as you cat nap, over and over and over, then comes the anger, then comes the flush of anxiety, then panic, and 8 hrs, later you think maybe now, go to bed and its far from stopping, I get so upset. I dont drink as a rule because I have so many problems, I hadnt had a drink for 2 years, a glass of Champagne at my daughters wedding, but i just got so desperate. thought it might help a bit, and it did a little helped me relax, but thats all. I do hope you find a way to stop it, I have just bought a vibration plate, I have heard it can help bad circulation, so thought i would give it a try. Last week I couldnt understand why it was so bad, then it dawned on me, I had been taking tablets for a cold, which had caffeine in, maybe it was the problem not sure? My husband is picking it up in a few days. I will let you know how it goes. Hang in there, I pray they find something to help us. take care. Chris Richards.

  • hi Chris thanks for your messages,wot kind of plate are you talking about?vibrating plate, never heard of it.heard of a vibrator,ha ha ha, but not a vibrating plate wot do you do with it? Yes you are right they haven't a clue,(my husband hasn't) they must think we love getting up & pacing the floor, feeling like crap the next day through lack of sleep. nice to hear from you take care x

  • Thanks for messages x A lot of sports uses use them, its a plate you can stand on, or sit on the settee and just put you feet on it, it has a very high vibration, helps circulation, and weight loss. The higher the vibration the better the machine, would have loved a 6000 machine but to expensive or to far away on Ebay, most say collect only because they are so heavy. I have chosen one in Newport, we will collect when husband isnt working. I have used one before, and did find it helps my circulation. wanted one for a while. So sorry you have this awful thing, I completly agree, and I have said the same as you. "Do you honestly think I want to have no sleep" thats with out all the pain and anxiety. I have hobbies but I am finding even the computer hard now, because its in my hands arms and shoulders as well. its miserable. Speak soon Chris x

  • Christine Richards- Was there Diphenhydramine in your cold med??

  • Dont know? whats thats? Tks.

  • sugar, Connie, also

  • hi nightdancer can you please be more specific, I don't no what you mean when you say sugar, I no by talking to people on this site, they have virtually cut ALL sugary stuff out,I have tried this but vailed miserably, if this is what you mean by sugar.

  • was referring to sugar on your comment that you said you drank orange juice and coke. And also, while on the subject, many cough meds have sugar in them. That's all. no biggie. :)

  • I no what your on about now, as for my ferritin level I new 97 was good, when my GP told me that ferritin as to be 200 or more I new he was wrong but you don't argue with your GP do you.

  • connie,

    OK so arguing with your GP is not good practice as you quite rightly point out but you are allowed to have views too and if you discuss them with your GP he should listen and stand corrected if you can prove he is mistaken.

    If you can find it documented from a reliable source regarding ferritin levels for RLS sufferers show this to your GP. He should be corrected because, it is most important he does not give out false information to others RLS sufferers he may come across.

  • thanks Kaarina don't get me wrong my GP he's so helpful the trouble is because its a group practice it is very very difficult to see the same GP.the GP I saw is the same GP that sent me to see a neurologist,& it was the neurologist that said my ferritin level was low, the GP has only conveyed to me what the neurologist as said that my ferritin level is vey low 97.DR B sent me a white paper so I printed it of & took it to show my GP.As for the ferritin levels I need some form of a letter to show my GP,any suggestions as to were I can print something of?

  • Would Dr. B answer the question about ferritin levels for RLS sufferers for you in an email if you ask him? Would that be good enough to show your GP?

  • thanks I think I will email him

  • Connie is there any chance your ferritin is 9.7 rather than 97 ?.x

  • hi pippin2 my ferritin level is 92mcg/L whatever that means, the letter I have received from DR Grunewald it says on the bottom of the letter that my ferritin is on the low side of 92mcg/L & an iron supplement can be given to bring it up to the top end of the range

  • Connie I would listen to your doctor and try taking iron in the form of ferrous bisglycinate (called Gentle Iron or Ferrochel). I would take it an hour before bed on an empty stomach and away from other medications. The Gentle Iron is 25mg and the Ferrochel is 18mg. I take 25mg and it completely stops the RLS. I only take it when I have RLS however, which is not every night. There are some nights when I have just regular insomnia and the iron works for that as well. What can I say, the stuff knocks me out. I truly believe that your insomnia and mine is due as well to those lousy dopamine receptors and that's why the iron works for both the RLS nights and the insomnia nights.

  • thanks for your comments traplight I have been taking iron pills for 2weeks now, from my GP because he thinks my ferritin is to low 92,but its a very long story as to why, it would take me ages to explain the why & wear fors, of my situation.

  • Then all the more reason to advocate for yourself, Connie, seeing a bunch of different doctors complicates things, and so you must speak up, just do not sit there and take it. I do not and never have since I was diagnosed with RLS 21 yrs ago. If I KNOW something is right or wrong, I will say something.. Saves a lot of trial and error and also a lot of waiting around to get things right.

  • Yes, I DO argue with my GP, when it is warranted, since I taught all she knows about RLS. :) Doctors do their best, but they do not know everything. My GP is an angel, but I do tell her things if she is mistaken about something. We HAVE to advocate for ourselves and SPEAK UP. :)

  • I do try & see the same GP but its very difficult, the last GP I saw told me to dble up on my patch from 2mg to 4mg when I told him I was on this site he just didn't want to no,I was so very angry, because I know what augmentation is like,+ also jumping from 2mg to 4mg was not good. The first night was brilliant, but last night was one of the worst nights ever I was up most of the night, my legs & my whole body were shaking all over, my heart was pumping like mad, about 7.0 o'clock this morning it stopped, but still cant sleep, I have really bad insomnia besides the RLS

  • Dont tell me you used 4mgs patch.. ?

  • no I didn't but I did put a 3mg patch on, but had to take it of, when I told him I was talking to people about RLS he just shot me down, saying he new about my case,but by the sound of it, he didn't no about augmentation,because I think I had this, the next night was terrible, my whole body was trembling it was scary, but hopefully back to normal, put 2mg back on.

  • I think she would be much better not taking tramadol if she can, because this drug definitely has added to the restlessness. I have reduced by 7 tablets a day of tramadol, 3 to do, and if I try to leave one off the night 2 I take I can look out, they are known for causing this. Good luck Chris

  • don't you feel crap by not taking the tramadol ,it used to take my RLS of but know I cant take it,(allergic to all opiates) I used to be able to take it yrs ago but started itching really bad, went to my GP & it was the tramadol OPIATES. I always thought it was good, tramadol always used to help me when I could take it will pass the message on.

  • Hi Think I replied to this message but cant find the reply, I find this site really hard to distinguish who is talking to who lol. Tramadol was a God save with me for years, I was on them for a few years was lucky to miss the itching, but my daughter tried them and itched like a dog. I took two every 4 hrs but found when I was asleep the pain woke me, so I was wanting more, thats what made me get off them. bar three, but just cant drop off any others yet, will keep trying to reduce but my restless lehs etc drive me insane. I had no sleep last night, and I can tell There is another night and I am not looking 4forward to it. Take care Chris xxx

  • hi Chris it 3.0oclock in the morning, this is the norm for me,I am so very tired but cant sleep,(I have chronic insomnia) by the time I do manage to fall asleep,my legs will start so don't get any sleep at all. Tell a lie stop in bed while about 12.0 clock the next day, I must piss my husband of, its not very nice half the days gone, but I am so tired.how long have you been on this web site? don't think I've spoken to you before, as for the tramadol I think they're brilliant for the pain, but I cant take them because of the itching. You no when you come of them(Tramadol) you have to wean yourself,I just had to stop them, mind you I was only taking 2 when I could take them. Well going to try & get some sleep. Speak to you later.

  • Hi Connie You have the mirror image of my proplems, some nights I am up all night, and like you say miss half the day, and husbands dont like it, mine thinks I am lazy, every time I feel a bit better in the day I over do things and make myself ill that evening and the next day. Only just found this site, so about a week, and I found you, why why do we have this awful illness, and why isnt it talked about, never heard about others suffering, obviously the medical profession dont think its important enough. they should try living like like for years. I cant trust the Drs, about tablets because of all the mistakes they have done to me. I could say negligence, just because they dont understand my problems, doesnt mean they are not real. 1 hr ago I couldnt have typed this my hands and arms were so bad I couldnt control them enough to leave a messgage, my foot is driving me mad even now, I have to press hard on my toes to stop the hard ache. I am lucky I can drink alcohol and it doesnt effect me much, I would have to drink three quarters of a bottle of vodva to be ill, but I dont want to, because its bad for my kidneys and liver, I have always had weak kidneys but cant stand the aching and pain, want some sleep so two big glasses of alcohol and my arms and hands allow me to type this to you. Tramadol has been wonderful over the years 8 to 10 a day 2 in the middle of the night. I thought I had found my friend but its turned into my enemy, and now I am battling my life just to be free of them. I feel like a drug addict, perhaps thats what I am. I didnt have any itching, although my daughter who suffers all the illness I have and more, just took them over a week, and the itching drove her nuts, so know exactly how you feel. I love my garden and until recently it had gone to pot, but I have a lovely young gardener who is wanting to learn, so he is sorting out my garden, its killing me I cant do it for long with out illness, just praying when I finish with this drug it will help. I will never ever be fit but if I can get some quality of life I will be happy, staying in bed doesnt help does it, but what time when you are in pain, and desperate at 5 in the morning for sleep. Hope you get some sleep tonight Connie. wish I could help you. Love Chris x

  • Hi connie did try to message you but it wouldnt let me. My hands are so bad cant stop long, the burning and twitching is driving me crazy. Have an appointment, with Dr 3rd of Feb but I dont hold out for any help. Hope you are ok. Chris

  • that's ok Chris, you say you have an appointment on the 3rd of Feb is it with a neurologist or an ordinary DR. Take some paperwork with you to show him how bad you are, you can always print something of this web site, I go for my monthly check up tomorrow I am taking some literary with me I always do, the GP will be sick tired of me, but I don't care.I've downloaded a white paper DR B has sent me taking that as well. its about augmentation its about 20 pages long.

  • I have just seen your comment on another post, and agree with pippins you are suffering with augmentation big time. Go and see what pippins and myself have said about this.

  • Thank you I will check it out.

  • If you ARE going to write a book, the first thing you need to research for your own sanity and fr the biggest RLS issue out there, research AUGMENTATION. See post with "Brilliant article" in the title, you can search for it in the search box, and it will pop up. That is where you need to go first to sort put your own issues, and yes, a lot of doctors do not know about augmentation, and just keep upping the dose, getting the exact opposite result that you want. No one can write a book or an article about RLS, and leave augmentation out of it. It is the single biggest issue, and it can be dealt with, but at 12 mgs, you are on 5 times the recommended therapeutic dose, as put out by the experts last year, lowering it yet again to 2 mgs of Ropinerole/Requip. THIS is what doctors and patients need to learn, of they are on dopamine meds.

  • My God, have no idea how you are functioning with that amount of Ropinerole. I was constantly groggy on 4mgs, until I realised the effect on my life and like many of us , managed to reduce the dose with some painkillers.

  • When you say you have " all over restless legs", it sounds to me as though you are describing another condition called AKATHISIA. It is often a side effect of medications , defined as "the inability to sit still". I`m not sure how much good knowing this is but it may give you another avenue for research.

  • That's very interesting. I do have almost all of the symptoms of AKATHISIA. I attribute those symptoms to augmentation of simply RLS. How is it different from RLS? What is the treatment? Tried to look it up but couldn't find much on it?

  • I am new to this site also. I started researching Restless Legs looking for something to help my Akathisia. Right now I take .5 mg of Pramipexole at night. It does make me hold still and get some sleep. The downside is that I am sleepy the next day and feel like I have starch in my muscles until it`s time to take another Pramipexole in order to sleep the following night. I listened to Dr. Peter Breggin being interviewed on the radio one night. He is a Psychiatrist who testifies in court for victims of the pharmaceutical industry because the manufacturers of certain antidepressants knew their drugs caused Akathisia and hid it. I did read recently about a study that was head lined *Improvement in neuroleptic-induced akathisia with intravenous iron treatment in patient with iron deficiency*. Also another study which found that 80% of patients in the study were helped by vitamin B6. I just had some tests run by analyzing what I am deficient in and also my food sensitivities which is different than allergies. I am seeing my Nurse Practitioner tomorrow. He has pointed out several findings on the tests that may be an indication of why I have the symptoms that I do. I don`t believe that all Akathisia is caused by pharmacuticals. My Son , who is 48 is beginning to show some of the same symptoms . I personally do not believe the answer will be found in a pill. P.S. I have had Restless Legs when I when I was pregnant. It involved only my legs, not my whole body. Stay in touch.

  • I have that and it's horrendous I really hate it , it's so painful and it's quite often too . X😇

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