Someone recently mentioned that " experts" were moving away from the dopamine involvement theory with rls....can anyone elaborate on this or direct me to where I could get more info....I've searched the webby thing and can't find anything.
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thedragon
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That was nightdancer and she is the one who can explain that theory... I think its mostly because not everyone gets relief from using the dopamine agonists, they dont work for everyone. Other meds work better for those who cant use the dopamine ones...
they don't work for me for one 
even the new meds i had that no one else seem to know might had well took chocolate drops lol
Dopamine meds worked against me defo made my RLS worst big time , so far nothing working for me have to keep swaping pain killers when they stop working gggrrr ,
would be interesting to know about the moving away from Dopamine theory and what they come up with hope they come up with something soon or i'll blow .....
nightdancer• in reply to
well, don't blow, but it is not happening any time soon. The drug studies I see coming up this year, are just "re-do's" of old studies, or studies on different doses of the same meds.
I hope not as they work for me
If you are taking a dopamine med and it works for you, then thats ok. It doesnt mean the dopamine are not going to be used. It means, i think, there are other factors which could be why people have RLS and not JUST the dopamine theory.
Really need nightdancer on here to give a better explaination. As i am just guessing...
I was the one who mentioned the expert saying we need to move away from dopamine-meaning that they need to look elsewhere, because there are so many people who the dopamine meds do not help one bit. It was a note at the end of a study I read, and it was a Dr. Allen who has done many studies for RLS, and helped write some of the really good "expert" books that we should all read. 
Thankyou .....do you have a link to the study?
Sounds a good idea Nightdancer. I know that you do a lot of research on RLS and of course we all have to do some ourselves and not leave it to you! I agree. Domane medications have very serious side affects on me and a Professor told me they were dangerous and had only been recently discovered as so because they haven't been in use that long. They have been linked to heart disease. Now one book I read explained why opiates help some people. It was somthing to do with a failing of a systen within our bodies which opiates restore. Any how nothing else at all touches my RLS, like yours so it's not a one off thing. Around 2004 it was a study on these parkinson disease drugs and discovered by accidents. It is time to look at something else because there is a large amount of people who do suffer after augmentation etc so what value are they for the majority? Take more and it's dangerous. I was once told by a pain specialist that opiates - there is no risk of addiction as long as there is pain there. He drew me a diagram and showed me someone in pain is at a different level to someone who is not. That's why we are not "high on opiates because we have excruriating pain. I need to get some up to date books on RLS and have a good read.
• in reply topeterk
Dopamine meds work for a lot of us, so would you have us give up what works for us ?? until they find a cure,
You say opiates work for you, well im happy for you, Dopamines work for others, and i know that you can get addicted to opiates, i believe this is why the FDA are trying to cut back so much in the USA.
So, until a cure is found for us, im happy to take what works for me, as if i didnt take Dopamines, i would not have a life, i have Primary RLS 24/7 with lots of pain,
• in reply to
No one is saying to give up taking the Dopamine meds. i use them aswell for my RLS. Its just that for some the Dopamine meds do not work. There is a difference to being addicted to a medication like opiates and being dependant on them.. As long as you stick to the dosage prescribed by your doctor then addiction shouldnt happen. The reason for the FDA is trying to cut back on the opiates in the USA, is because of the people who take them as recreational use, to get high. The people who really need them for chronic pain AND for RLS, are the ones who will suffer, when all other meds havent worked for them and the opiates are the only meds that do work.
At some time i know the dopamine meds will stop working for me, augmentation. But i cant take the strong pain meds, (opiates) as i have tried and my body doesnt like them.. (side effects). If i could, i would take them. In the meantime i will carry on with the dopamine meds. After that, who knows what i can take, but i will worry about it when i get to that stage...
nightdancer• in reply to
I live in the US, and I know why all this is happening with the FDA and have been working on it for a year or more. It is the amount opf acetominophen used in some opiate meds, NOT addiction that is the issue, and the people who break the rules are the ones who ruin it for us who do not. NO one is saying not to take dopamine meds, it is just that for at least half of RLSer's are not helped by the dopaminemeds at all. I am one of them. We all have to do what works for US. I do know about the FDA and the petitions that I have started and hav etalked to the advisory panel, etc, etc. It is the mixed meds they want to limit. all they have to do is to stop putting tylenol in them, and the FDA will be happier. that si the issue, FYI. Dopmaine meds help you, so that is great. It would be nice to have one med that workls for everyone, but that is a looooong time coming.
I have to say that some of what you say is not entirely correct. Dopamine meds have been in use for decades. They are originally a Parkinson's med, and have been used for that for years and years. Nothing new about dopamine. AND, as was brought up, there is a big difference between addiction and dependence, and true pain patients do not have too many issues, as you and I know. And NO ONE is saying not to take dopmaine meds. We are just saying that the same med does not work for anyone, and no one here should ever tell someone NOT to take anything, but we are allowed to raise legitimate concerns, and the FDA just out a very strong warning on Mirapex (Pramipexole) and the warning for Ropinerole is coming. so we have to be aware and do our homework and get things straight. I keep very close tabs on the FDA and what they are doing and WHY.
• in reply tonightdancer
I still believe opiates are addictive.
Also im aware of how long the dopamines have been used, and the problems they can cause.
But im also aware of the problems opiates can cause, and had first hand experience of it, with a family member.
• in reply to
And i did not mean abuse of opiates in my above comment.
peterk• in reply to
All medications have side affects. I had serious side affects to dopamine drugs. I have to explain Tallu what a senior pain consultant told me. I am on oxycontin and tramadol. Oxycontin is a controlled opiate. These are the only drugs that relieve my painfal RLS. The doctor explained someone who is not in chronic pain or pain at all, is on a different level to someone who is. The person who is in chronic pain who takes an appropriate dose of an opiate will not be high as it concentrates on the pain. No way insinuatring by the way that your family member abused opiates. Those though with kidney problems or liver problems have to be very careful as further damage can be caused. Also monitoring needs to take place to ensure that these organs do not become damaged by the use of opiates.
• in reply topeterk
Excuse me here Peter, did where did i ask you to explain anything to me ?
We are all stating our beliefs and opinions here, aswell as our experiences, i am correct here ?
I am a patient of a pain clinic myself, as i have, Osteoporosis, Primary RLS, with pain 24/7.
Plus i have arthritis in my spine, and 6 collapsed vertebrea at the top of my spine, 2 crushed ones at the bottom of my spine.
Plus arthritis in my right hip, im waiting for a hip transplant as we speak.
I also have high blood pressure that doesnt seem to want to be controlled by meds.
Now Peter, do you want me to tell you what my, Consultant orthopedia surgeon has to say about pain, or my Consultant Neurologist, i see him for rls, Or my other Neuorlogist that i see, from having a couple of small strokes.??
• in reply to
ouchy..... Tallula know you don't know me but my thoughts are with you on this one ....
you must be in one hell of pain ...compared to some........... on here my thoughts are with you ... you sure come across as a person that cares about what other folks say rather than down them ... with your own pain... unlike some do ... hope you painless night 
peterk• in reply to
I am responding to your comment regarding opiates and RLS. This is an RLS site so I don't go into what other medical conditions that I might have.
• in reply topeterk
Why no Peter, all the rest of the group do
I think its best to really, as some of us have to take so many different meds, we need to understand the battles we have with our health. and its also the first time i have mention anything apart from my PAINFULL RLS.
Lots of us suffer from more than one health issue, and its wise to be forewarned, before you go dishing out advice, otherwise you could help to make that person become very ill, dont you agree Peter
• in reply to
totally agree with that Tallula most of us suffer with more than just RLS and we're all trying to find a link between one illness to another and of course what meds might work against each other of it is important to mention other things besides RLS , This is a health site too ....
nightdancer• in reply to
agreed. every RLS support group has to cover other health issues. Lots of things tie in together. If I did not have opiates for my crumbling spine, I would not be able to move, so thankfully since no RLS meds work for me, those do for the RLS as well, and have for a decade..
Hi Peter I think it is important to realize that as with Diabetes (types 1 & 2) R.L.S can be either inherited or can be a side effect of kidney problems, stress or other illnesses. I would think that this being the case different medications would work depending which type you have. If it is to do with other medical conditions R.L.S improves or disappears when other medical conditions improve . With the inherited condition there appears to be no relief throughout your lifetime.
nightdancer• in reply to
That is exactly what Peter was doing, sharing what his doctor said, and sharing his opinion, just like the rest of us.
• in reply tonightdancer
I was meaning the dopamine meds being used for RLS. havent been allowed for use til quite recently, altho i did think it was longer than 2007, so i stand corrected. I know they have been used for PD for a long time, as thats how they discovered they could also be a benefit for RLS.
The original studies on dopamine were done in the 40's, and in the 70's Dr. Wayne Hening (RIP) picked up on his studies and that is when the RLS/dopamine studies started. the two different genes wer discovered in 2004 and 2007. Mirapex was approved for use in RLS in the U.S. in 2007, so that was the "new" part. just to clarify.
• in reply tonightdancer
Hi Nightdancer,
I have been trying to find books by dr Allen with no success, could you direct me to any?
Thanks if you can,
Cazx
That is right, Elisse. They say we should have "tunnel vision" when it comes to the dopamine connection. In other words, the old research is not that great, and we need some new avenues of study, which we know already. There could be and are mnay causes and triggers for RLS, so justr looking at one thing may prevent the "real" cause from being discovered. sorry, I have had that stomach virus, and you do NOT wnat it, trust me. It put me down for a week. arrrghhhh Better today, some.
I meant we should NOT have tunnel vision when it comes to RLS and what different meds help different people.
Nightdancer....do you have a link to that study please.
Like I said, it was a comment that the doctor said in an article talking about a dopamine study. he made the comment "We have to start looking at other avenues of treatment" I never said there was a study, it was a COMMENT HE MADE. (capitalized for emphasis, not yelling) That's all. There is no link to any study. It was a just a note at the end of the article. Any new studies I will let you know about, ok? again, no link to any study I can send you to. That was his comment and I thought it was interesting and also thought "thank God!" because we need NEW studies studying different causes for RLS as soon as we can!
Not arguing but you had said ' it was a note at the end of a study I read". Further up this blog. Sorry I got the wrong impression but I like to read stuff and learn stuff and that sounded very important for us and I would like to know more.
I would like to know more , too. My theory , and always has been, because my RLS started after I broke my back, that it does have something to do with the "excitability in the spinal fluid" during sleep studies of RLS patients. That HAS been studied, but MORE needs to be done in that category, IMHO. LOTS of people report symptoms atarting after a spine trauma.
I am going to google the excitable spinal fluid theory as i dont know anything about that! but how about this as a theory..we are born with the genetic code for rls ..like some are born with the a cancer code...it can be triggered at some point in life by a physical or some other trauma..so its not as a result of a back trauma?
sorry if it sounds like im teaching you to suck eggs but im trying to find my way around ALL the theories!
I cant find anything on the web related to excitable spinal fluid....any ideas where to look? thankyou!
• in reply tothedragon
Hi, well ive been trying to find this also, and cant find anything either, so, if i find anything i will let you know give you a link if possible.
nightdancer• in reply to
I have a list I am making, and there are lots of links to look at. will send in the best ones later. I have 5 other groups to deal with right now.
I have been doing this for 15 years, and finding inof on RLS theories is always an adventure. There are many people born with the RLS gene" that is documented well, since 2007 when they first started really studying the genetic connection and discovered the gene. There is Primary RLS, which is genetic. Then there is secondary RLS, which means the RLS is caused by an underlying condition, like low ferrtin, a possible link to back trauma, see rlshelp.org. All this info is on that site. TO find a study about spinal fluid excitabilty is sleep studies is a not a quick search, trust me. I have 3 different computers with stuff saved on all of them since 1997. again, thwe "spinal fluid excitability" was a "mention" at the end of a summation of sleep studies. If you put "spinal fluid excitability in sleep studies" in your search engine, you will find it eventually. It took me yeras to find info like that. When I do find the files that I am referring to about sleep studies, I will send it on. But, there are two diffeerent kinds of RLS, remember that. Not ALL RLs is genetic, and not all RLS is secondary, and it takes a lot of sorting out to tell the difference sometimes. I hope that is clear, because I do not know any other way to tell you. I see and have literally read thousands of papers and studies, and talk to a lot of RLS experts on a regular basis. If you understand about Primary RLS (genetic with no other known cause) and the difference between it and secondary RLS, then we are halfway home. I cannot just come up with these files on the spur of the moment. I read and remember things, I have notebooks full of info, and like I said 3 computers, so if I cannot put my finger on something precisely, at least know that I literally have a photographic memory, and a very good memory. I know I have genetic RLS, because both my sisters, my nieces, and my niece's kids all have RLS, but sometimes it does need to "triggered", and my RLS `started right after I broke my back. something has to trigger the gene. One of my parents had to carry the gene, but neither had/have RLS, but they passed it onto all of us. The gene can be there your whole life, and if it is not triggered by something, it may not ever start up. That is not a theory, that is an RLS fact. I hope this helps you understand what I am trying to say, and when I say that a doctor made a "comment" about looking elsewhere besides the dopamine system, that is whqat it was. It was one sentence said at the end of an interview he did about RLS and a study that brought no new info. I do not know how to explain it to you otherwise.
The "experts" cannot find their way around the theories, so I do not know how you expect me to. I only can say what I have read, experienced and seen and heard from my groups and my own research. When I have time I will send a link for the spinal fluid in sleep studies. If you put "slep studies" in with the other phrase in your search I bet you will come up with something. That is what I am going to have to do, because I am not on the right computer right now.
I explain in another reply to you about genetic RLS (Primary) and Secondary RLS, which requires a trigger to get the RLS started. There are active genes and "non-active" genes. Lots to read about that all over, and please, again, f you have not read the web site rlshelp.org, please do so. It is concise, easy to understand, and he is an RLS expert with international connections with an active practice and he answers every email. all I am saying, if you want to talk to an expert, he is the one.
Thanks for the info....I do get the primary and secondary ..I know mines primary but it started so early in life I can't remember a trigger. I just find it really interesting. With my medical background it just gets me going . Wish I had the cash to fund my own research.!!!!!!
I'll keep looking for stuff but thanks.. I don't really get on with the rls site...the treatment page is ok but the rest isn't that user friendly to me
• in reply tothedragon
sooooooooooooooo glad im not the only one that gets lost on there lol pretty good site other wise
• in reply to
Yes, thats if you have time to wade through everything on there, they should sort it out a bit better really,and i find some of it is outdate, when you find what you want that is, oh well, keep searching .
I am not talking about rls.org That is theb US RLs Foundation site, and I don't like it either. Not user friendly at all, and that has been an issue for a long time. rlshelp.org is a lot easier to get around. for me, and a lot of people.
• in reply tonightdancer
sorry Nighdancer but i was on about the second one you put yeah............great site but not so great to get round would be great if you could do a search on there i.e type in a med and go straight to it rather than go through the whole lot there's no search bar on the site ..... thats whats missing.....
• in reply to
the first one i've never actually been on funny enough .... lol
nightdancer• in reply to
That is probably good. You have to register in 3 different places to get any info or get to the discussion board. I rarely use the rls.org. You think it is hard to scroll down one page on the rlshelp one? I undersatnd that point .For the "search challenged" (not referring to anyone here, just in general) most people like that site because all the med info is on one page. For THEM it is way easier. I have learned my lesson on that over the years. so if someone can search with no problems, then that page COULD be annoying to those of us who can find something in 2.2 seconds. LOL It is just the fact that the info on meds and "drugs and foods to avoid" are all on one page, which makes it miles easier for lots of people. again, whatever the subject, we are all different. 2nd reason I like it is the accuracy of the information, and the doctor who maintains that site is a practicing RLS expert and has done many studies, so I like to hook people up with him, because of the simple fact that he will answer any question you ask him in an email, and lots of people take advantage of that feature, and most web sites do not have that at all, so you never get to ask questions, and feel assured that you will get an answer. That is why I like that site.
suck eggs????? I have no idea what that means ??? please explain. We are saying the same thing. I say trauma triggered my RLS gene (which is my theory and my sleep doctor's theory for my PERSONAL case of RLS.) And, you asked me of trauma could trigger the gene code., That is exactly the same thing that I am saying, too!
Ha ha I forgot you were in the US. " teaching your grandma to suck eggs" an old English phrase meaning telling someone what they already know!!!!
Maybe a trigger could be stress...I was always an insecure child...
• in reply tothedragon
Hi, i dont know if this will help, but ive just been on the phone to a friend, and she in research, (neurology) well, she said,
According to current research, that the cerebal spinal fluid shows lower iron and ferritin levels in RLS patients, but she hasnt heard of "excitable spinal fluid"
thedragon• in reply to
Thanks tallula..I read that the other day
Hi there. Please can we stop arguing. We are all here to help eachother, you as well, and it's just not night picking people up on everything. What night dancer said, was said in good faith. I don't know them personally but I do know that they give good advive and is pretty passionate about trying to help all RLS suffers in the broad sense. I am not having a go at you by the way as I understand you like to read about it. I do too. We all need to educate ourselves on this illness
As far as I am concerned this isn't arguing at all. We are just discussing something important. I am trying to get info on things and I know nightdancer has the knowledge...I am trying to learn about my condition. Sorry if it doesn't come across like that and you've got the wrong impression. Moving away from dopamine drugs was somthing I have not heard f and I feel it's of major importance for us to understand
I really do agree with you about the importance of understanding as much as we can about RLS so we can help eachother. No need to apologise. Sometimes things can come across wrongly on here. You've cleared the wrong impression up now so don't worry about it.
• in reply topeterk
Wow, whos argueing, i thought we could comment and ask questions aswell as try to help each other !! your not on admin are you ?? tut
nightdancer• in reply to
no one is arguing, just exchanging info and ideas and theories. I do this all day, so I know when someone is arguing and this is not it. LOL
• in reply tonightdancer
I think that was allready cleared up
nightdancer• in reply to
The administrators are listed under "Administrators" FYI.
the study was a another, tired, old dopamine study, and all I am syaing is that he comented that they should look elsewhere. that is the extent of the comment, because dopamine meds do not work for at least half of us. It was one sentence added at the end of an interview about a dopamine study. Period.
It was a study that was about dopamine, and he said at the end, that they should look elsewhere, that's all. Where, I do not know, but Dr. allen says that we need to explore other avenues. It was one sentence at the end of an article.
This has been my feeling for more than 8 yrs. all the dopamine studies just cover the same thing over and over by the drug companies, and not ALL accurate by any means, sinc edrug companies do have an agenda. We need studies by people who will not profit off the results of them. again, it all comes down to money.
If you come across any interesting articles and suchlike about this would you mind sending me a link. I am most interested in the dopamine / genetic aspects of the disease. Thankyou.
just put "gene RLS" in your search, and I bet you will come up with something. I KNOW you will. But, I will be back later, since I am very busy today dealing with doctors and the FDA petitions(in the US) etc. We are in crisis mode as far as certain meds go over here, and we are on a time limit, so I am working my tail off.
Thankyou....I love just passing ideas back and forth...maybe I should find a hobby to keep me off this site!!!
A hobby is useful for RLS but of course you must put your points across and I'm not Admin just a chronic fellow sufferer of RLS so I am as interested as you in any articles etc. The passing of ideas is a great one as it helps all of us.
• in reply topeterk
We are all chronic sufferers Peter, why else would we be here, looking for answers, i have lots of hobbies, when im fit enough to do them that is, jigsaws is a good one, on those sticky boards, for when im in so much pain i cant stand, then i can do them when im laid flat on my back, especially after injections for the arthritis in my back. Now thats when the rls is really not funny.
nightdancer• in reply to
I play a game of Scrabble almost every day with my 85 yr old mother who had triple bypass surgery last year. she was definityely the oldest heart patient, and the only female. All men in their 60's were the heart patients. anyway, a game of Scrabble keeps our brains going and thinking. Anything to distract. LOL
• in reply tonightdancer
Well done to mum !
• in reply topeterk
Maybe you should find yourself a hobby Peter, pass the time on when you have nothing to do
i too have Chronic RLS still trying to get my meds sorted............. gggrrrrrrrrrr like you said Tallula we're all chronic sufferers of RLS on here we're all in the same boat but it all goes in what you do about it and how you live with it that counts doing something with time rather than moaning about it no matter how knackered you are ,,,
hobbies are a great thing something to keep your mind busy ..... is healthy like you i have many hobbies living in the middle of no where im able to go on walks in the night.. long the tourch doesn't go off lol goto a top of a hill and yell......................... jeeeeeez that gets loads off my chest specially when im rubbed up the wrong way ....
• in reply to
I think i will give this a try, maybe i will hear you one night
thank you for that i try my best not to be a moaner or a bore .... best to get on with it nothing i can do to make it go away of course i don't have the added pain like yourself Romany and we all have good days,bad days long we're all here for each other that's all that matters
To`add to that, since we are are explaining that we`all have other issues, I found out 2 days ago that my osteoporosis is so bad (total hysterectomy at the age of 29, and I beat cancer TWICE) that I am about as far down on the chart as you can get, and my spine is "crumbling"- a direct quote from the doc. I have dealt with my back my whole life since breaking it at the age of 14, so pain is my constant companion. 3 neck surgeries and 2 back surgeries, so far and counting. I beat cancer twice, so I feel like I have slayed a couple of dragons already. a cure for severe migraines would be nice, and I had a stroke undre anesthesia last year when I had my gall bladder out, and it went to my left eye, and I lost my sight in it permanently. Being 56, I can only imagine what else is coming, so we have to keep going and help each other as much as we can. Also, losing the sight in one eye keeps me from seeing the keyboard that great, so every day is a new adventure. 3 years of talk therapy and grief counceling that I won't go into the details, has been a HUGE help for me. Helps to pour your heart out at times` and know that there are people listening. So, thanks for this group!
Pouring our hearts out is not moaning, even though that is absolutely fine to "moan" once in while. We all feel like crap. If we are having a bad day or night we should be able to tell about it, and we do.
Well that was a great discussion and i want to say thank you all for not just the info in this lot but for the entertainment lol. Trust a man to see it as arguing (sorry Peter) but you have all made me feel a little more thankful that i don't have as many 'extra' complaints on top of the RLS as you do. Your a wonderful bunch of people and am very proud to be a member of this group of fantastic people. Your discussions are entertaining, informative and on a lot of occasions very entertaining. Thanks for cheering me up this morning ladies. Wishing you a pain and RLS free day
Wow ...I hadnt realised this thread had got so big...it grew in the middle and I hadnt noticed!
I've just got to reply to som ething....opiates as I believe just kill pain....they sedate the receptors that feel the pain...they don't fix anything , they just turn it off! And they are addictive ...maybe not for everyone but if you have the addictive gene and you are not careful...they will get you. No matter what your strength of pain or pain threshold. It's nothing to do with if you have chronic pain or not....I believe what peterk,s doctors explanation is very misleading.
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