I’m confused about RLS as my neurologist said it was in my head, it’s the brains way of protecting you if something bad is going to happen. So there for hypnosis would work as the hypnotist could take away the RLS.
Can someone explain to me.
I am sorry if this is a daft question. “Confused”
Hi Dasymoo, Rubbish! And he is supposed to be a Neurologist??? Stay on this forum and you will get some sensible answers.
You’re not confused, he is. He’s a waste of space. Report him, if you can.
Is he a real neurologist?
Sounds like he came out of the hold of the Ark?
Thank goodness they are a dying breed.
At the same time, hypnosis may help some people, for whom stress is a major trigger.
Well my RLS protects me from a normal life quite well.
Well the fool is half right- RLS is apparently caused by dodgy dopamine receptors/ inability to absorb iron and your brain is in your head so at least he scores points for that.
Ugh....he sounds like another Dr. Sarno. (If you’ve ever read «The Divided Mind», you’ll know where I’m coming from)
So, is he going to give you the help you need?
I was sent to a phycologist to talk.
Psychologists are even worse, the original snake-oil salesmen.
Fire both of them, and start with a good GP who will listen.
But, just in case, how do you know you have RLS? For how long have you had it?
What are you doing about it? Do you have all the information you need to shoot down what the Americans so aptly call a Dick-Head?
And you spoke about 'my' neurologist as if you were familiar with him?
If so, why so?
My psychologist is great in helping me with lots of things. While she can’t do anything about the physical nature of RLS, she does help with the psychological aspect (which I do find actually helps a little bit)! That is, until an attack comes. Once an attack comes, psychology does not help. Since my psychiatrist is on vacation for the next few weeks, he gave me someone to see in the meantime. The only person he could find as a good match for me in his office is a psychologist who specializes in anxiety disorders. I saw this person for the first time last week and he was awesome (with the added benefit of being close to my age, which I believe makes a bit of a difference). He introduced his model of anxiety to me. It made a lot of sense to me in light of psychological issues. I see him again in 2 weeks, where he will attempt to answer the challenge I gave him at the end of the session. My challenge to him was to take a physical disorder like RLS and fit it into his model. If you want, I’ll let you know what he says.
That being said, though, it is utterly contemptible for a medical person to write dasymoss (or anyone) off as a psychological mess. I am so incredibly sorry for that. It is such a lonely, demoralizing, and embarrassing feeling.
Dasymoo: are you getting ANY medical help AT ALL?? For me, I cannot live without my neupro patches. My suggestion to you is to bring up all your concerns and feelings to this psychologist. Having seen lots of psychologists in my life so far, I can tell you that mine have been tremendous at providing valuable insight in my life. My one at the moment is still good at providing help, even with this very psyhical syndrome that is only 3 years. But....she knows that she can’t help with the psyhical. She’s been with me in my home during one of my attacks and it really affected her deeply to see me writhing in so much agony. She knows that I need my medicine to survive. Did your neurologist refer you to a psychologist for supplemental treament, or as replaced treatment??? I hope to God the former. I don’t know if you’ve been reading about what I’ve been through lately, but suffice it to say that I completely emapthize with you in your frustration and whatever other emotions you might have surrounding your neurologist’s decision.
Hugs,
Jessica
Jess, I misspoke. My apologies, to you and all.
I meant psychiatrists, those persons who label everything that is human and then find a pill for it, with the gleeful assistance of the pharmaceutical trade.
Thank you.
Man, I hope that dasymooo doesn’t get caught up in what I got caught up in with my psychiatrist. THAT was the most utterly demoralizing experience EVER.
Jess, I have a concern for you - psychologists don’t normally go to a client’s home...did that feel OK to you? If you were “writhing in agony” you might have something else, in addition to RLS, going on. Also, there definitely is a connection between anxiety/stress and my RLS symptoms getting stirred up. But it’s not the cause, just like venous insufficiency mimicked but did not cause my RLS symptoms. When I had some vein work done, I was able to back off Mirapex by 1/4 (one .50 tablet less per day), almost immediately. A few weeks later I dropped one more pill. So if you relieve whatever anxiety you have, it may reduce your symptoms. If they were caused by anxiety, not truly RLS by definition, they may go away. That would be wonderful! For me, with less Mirapex in my system, and the help of CBD/THC in the evening, I’m down to one Mirapex at night only. Very occasionally I need to take one during the afternoon and at night - my system is still adjusting, and I hope that’s a sign of some augmentation still going on - I’m going to try to resist the afternoon pill (by taking a walk, probably) next time I seem to need it, to see if I can drop it entirely. This, from a woman who for decades has panicked at the thought of running out of Mirapex, or not having some in my purse! All of us need to be persistent until we find what works best for us - it’s a very individual thing.
I can’t believe this, but I’ve just talked myself into wondering how anxiety (of any sort) affects the dopamine system and iron use, which could then open the door to treating RLS from a different approach. Because CBD/THC doesn’t, as far as I know, do anything but relax me...yet it’s helping me get off Mirapex. Not the same as saying “it’s all in our heads” (psychosomatic) - I’ll let you guys know if I find anything interesting. If anyone has already followed this line of thought, please let me know!
She's actually a psychiatric nurse, which is a bit different than a psychologist. A psychiatric nurse can go to clients' homes and can get more involved than a psychologist can.
Sorry, not much in that anxiety and the stress response is controlled by the hypothalamic pituitary adrenal axis. HPA It's a complex system of brain cells and endocrine glands. The main neurotransmitter is adrenaline (American = norepinephrine.) The main hormones are Adrenocorticotrophic hormone (pituitary), adrenaline and noradrenaline (adrenal medulla) and cortisone (adrenal cortex).
Dopamine is a neurotransmitter found in various parts of the brain. In some parts of the brain it is needed for controlling movement. A lack in these parts can lead to RLS or Parkinson's disease. Dopamine is also found in the "reward" part of the brain or pleasure centre. In this part it is involved with impulsive behaviour and addiction. In the frontal lobe, abnormal levels of dopamine have been associated with attention deficit disorder and even schizophrenia. Dopamine is also associated with sleep regulation.
Apart from mechanisms in the brain which try to "balance" the various neurotransmitters, there is no connection between the HPA and Dopamine
However, RLS is a good "stressor" I.e. something that triggers a stress response. The stress response may heighten our sensitivity to the stressor or may affect our response to it. So if you like reducing anxiety might not reduce RLS' symptoms but it may make us feel better about them.
Timzz, you sound like you have a lot of knowledge - are you perhaps a medical professional? One thing that’s very important to remember with RLS or anything other disorder - the body is extremely sensitive and extremely interconnected. Everything affects everything else. Lowering anxiety (a stress response) is helpful in lowering RLS symptoms for many people - perhaps because whatever anxiety symptoms the person was experiencing mimicked, or exacerbated, the symptoms that are really from RLS. I think that’s what I’ve been saying, and it sounds like what you might be trying to say, also. P.S. - Nothing will make me feel better about my RLS symptoms except their disappearance.
Yes that's what I was trying to say and no, reducing anxiety won't make RLS go away
Not good! Rubbish I agree. I'd be furious. Sounds like I've misinterpreted his theory about protecting you from something else. I so hate when Drs or others regard legitimate upset & distress as something abnormal. Embarrassed for my for my for my for my previous profession with that suggestion - unless there is other stress to resolve which can be a cause of the level of severity I understand
Susanne O’Sullivan, who is a neurologist, has written a book called “It’s all in your head”. I know, from experience, that some neurologists have latched on to this and this is obviously to the detriment of people who are really suffering.
I have had RLS since I was a child age 8 i am now 50. I got a brain scan 2 years ago. I have been diagnosed with RLS. I always thought it was in my head.
My neurologists is not clued up.
He may be just trying to think through the evolutionary reason why RLS has survived. I've often wondered that though have come to the conclusion that the genes get passed on before they are expressed later in life, same as some other known dreadful diseases.
But sometimes I have pondered what it is all about. Are we kept awake artificially at night so we could be the lookouts for danger in a primitive group and then able to sleep day time when others are awake. Perhaps he just ponders too.
I can't sleep in the day either, so can't go along with that theory. I get what you mean about it not kicking in til after you've bred though. Perhaps the day will come when everybody has a DNA test at birth and the parents will know all the potentials. Trouble, is what will they do about it?
It certainly is in my head because that's where the dopamine messes up and causes my RLS! I asked my GP to refer me to a new Neurologist a while ago .... good luck x
It’s not a daft question - RLS is confusing! However, RLS is also a real disorder, whose exact etiology is unknown but is thought to be due to brain chemistry - it’s NOT an imaginary thing. Shame on your neurologist, when he/she should know that a nerve conduction study would show how your legs respond. Plenty of research has narrowed the field of possibilities - it has to do with iron, dopamine, and perhaps other chemical systems. My suggestion is to read as much as you can in this forum, and perhaps the Mayo Clinic websites, for good descriptions of RLS - if you believe you have it, you probably need a new neurologist.
Perhaps you have misunderstood your neurologist. It's now generally thought that the first part of what you think he/she said is right. it is to do with your brain. More on that after this -
The second part is frankly rubbish. RLS is a physiological disorder, i.e. it's physical not "just" psychological.
There used to be a class of conditions called "psychosomatic", they were called that because they were apparently triggered by psychological or emotional factors. However, it is now known that there is a connection between psychological factors such as stress and the immune system and a lot of conditions previously known as "psychosomatic" are now known as "Autoimmune".
However RLS isn't even one of them.
I know that doctors used to say "It's in your mind", but hopefully there's not so many these days and it would be very ignorant (possibly negligent) to say this.
Furthermore to say somethings "in your mind" and somethings " in your brain" is different. Mind is where our thoughts, feelings, ideas, memories, imaginations, etc exist, they're subjective and no-one else but ourself can observe them.
Your brain is in your skull! It's a physical object. It can be observed by others
There are some known causes of RLS, they're physical. One such is iron deficiency. Have you had blood tests for this. In this case you should be prescribed iron medication.
The main PHYSICAL thing associated with RLS is a low level of a neurotransmitter called Dopamine. A neurotransmitter is a chemical by which one brain cell communicates with another. Dopamine is found in various parts of the brain and in parts it is used by brain cells that enable us to move - motor cells. Lack of dopamine in one part of the brain causes Parkinson;d disease. In another - RLS. In other parts it's associated with addiction.
If your RLS is idiopathic, i,e, of no known cause, (such as iron deficiency), then I think it neglectful of your neurologist not to prescribe a medication which will increase your dopamine levels (in your brain). One such class of medicines is called Dopamine Agonists e.g. Pramipexole (UK name, USA name Mirapex). If you have the movement disorder associated with RLS i.e. Periodic Limb Movement Disorder, sometimes an anticonvulsant is prescribed e.g. Gabapentin.
There are some disadvantages to taking these medicines but they are usually effective. Some people also try Hypnosis. Personally, I know of NO EVIDENCE that this is effective for treating RLS. I believe you might try it as a "complementary" therapy NOT an alternative instead of medication.
You don't actually say, but it is possible that your neurologist did prescribe some medication and suggested Hypnosis AS WELL. That's fine. But if not this would appear to me, my opinion only, this is malpractice.
Yes RLS is in your brain - physically, it is NOT just in your mind.
Long winded I know, but I hope this helps clear up any confusion.
Good explanation, Timzz - my only contention is that Mirapex is not usually effective for most people - only they don’t realize it. They get some relief, and then their symptoms worsen with no chemical chaange in their brains, so their ups the dose, and symptoms worsen again. Some people call this augmentation - in talking with my doctor a lot of people also call it a “ pardoxical response.”
Yes I've heard of augmentation, I'm a lucky one I guess. I've been on Pramipexole (Mirapex) since 2007 and it's controlled the RLS to a bearable level and no worsening.
RLS seems to be a different throw of the dice for different people.
You are among the lucky ones! I’ve bee on Mirapex since 1979/ It’s been a long battle during which no one mentioned things like augmentation or paradoxical response. Now trying other things and have begun backing off the Mirapex.
Although no one's mentioned it, have you experienced augmentation.? I am ignorant about it, I admit, but I've read it happens in the first six months. If you're not had augmentation and have been taking Mirapex for nearly 40 years it seems unlikely that you will get it. I don,t know the statistics. Why back off something that MIGHT cause problems when the chances are, it won't.
I do recall that when I started on the DA, I only had RLS symptoms in the evening. For some time now I have them at other times, but only when I feel tired and keep still
Is that augmentation
(I’ll answer your question below) - What I meant - sorry to have been unclear - is during 39 of my 40 years with RLS, no doctor or forum (in the early days) mentioned augmentation (paradoxical response). Talk of it is all over this forum, and it’s more widely talked about in medical circles and being studied a bit. It’s not true that it starts in the first 6 months. It can start at any time, depending on how an individual’s body handes and responds to the medication. I’ve had increasingly severe symptoms over the years, and my dr’s always either upped the dose, or suggested triplicate-level meds that would have made me even more sleepy than the Mirapex. Now I’m retired, and I see what’s been causing the exacerbation in symptoms. Some people have times with no symptoms - I’ve never had those times. Now, with the help of CBD/THC and backing way off Mirapex 9almost to zero now) - I’m sleeping through the night, and more restfully. For the first time in decades. So I can tackle the indirect side effects of RLS, like weight gain, my sleep/wake schedule being out of balance, etc. (I have realized in the past few months that I would eat at night to stay awake so I’d be tired enough to fall asleep no matter what my legs were doing. It does sound like you may be experiencing augmentation - it’s hard to tell for sure. If you are, symptoms will worsen if you change your med schedule - but in a few days you’ll most likely see a reduction in symptoms. Evenings, or whenever you start to settle down for the day, are hard for most RLS sufferers. Read up on augmentation and see what you think. Then talk to your dr if you think a change is in order. Let us know what you decide, if you will - more info for other readers.
Thanks, I'll read up on augmentation, but I'm quite happy with things as they are. There are more pressing issues. Incidentally THC is illegal here.
I don’t know where you or most people on this forum live, so I just just offer what I’ve found helpful. CBD with THC is legal where I am. If you’re happy with things as they are - definitely don’t change anything, and do take care of whatever is more pressing. All best!
Thanks, the more pressing is debilitating nerve pain caused by a compressed spinal nerve. I have had some symptoms from it for years and was taking amitriptyline for it. Suddenly it got much worse and the doc stopped the amitriptyline and started me on Gabapentin. I didn't know amitriptyline .makes RLS worse and Gabapentin helps it. So I am looking forward to less RLS symptoms., of which I have none at the moment. However the pain is not a desirable alternative. NSAIDS have had some effect, opioids not touched it, waiting for the Gabapentin to kick in.
Are you sure about the low dopamine levels being the cause, Timzzz?
I thought that RLS sufferers have been found in studies to have normal levels of dopamine (maybe it was rat or mice sufferers rather than humans) and that the hypothesis was that idiopathic rls was caused by a problem in the transportation of dopamine which is thought to be caused by brain iron deficiency - iron being a crucial component of the dopamine transportation system. My understanding was that that is one of the reasons why augmentation is thought to occur - because when taking the dopamine drugs we are actually adding dopamine to already adequate levels.
I’m not a scientist and have a dreadful memory so it’s possible I recall that incorrectly. Maybe someone else would confirm.
You're may be right, I'd have to look that up. There is a form of Diabetes where the sufferer produces enough insulin, it doesn't work for some reason. I'm not sure how the low dopamine levels theory arose. I wonder if it's similar to the theory on the cause of schizophrenia. Doctors accidentally found that when schizophrenics were given a drug for nausea and vomiting (chlorpromazine) it reduced their symptoms. It was discovered that chlorpromazine reduces Dopamine levels. Hence it was thought that schizophrenia is caused by Dopamine levels being too high. I've seen side effect warnings of Pramipexole do mention the possibility if hallucinations, (at least I believe I've seen it). The related argument is, it must be true because it works. This was said of electroconvulsive therapy ECT (brain zapping). It was noticed that epileptic schizophrenics symptoms reduced after a seizure. SO, let's induce an eplileptiform seizure and "Lo" it works. Did it? I've heard there was a hospital in England that was getting failry good results from ECT but were a bit lax with their maintenance routines. Eventuallu they caught up with this and found the ECT machine hadn't been working, possibly for years! (At least I believe I heard it).
However, how could you accidently discover Dopamine agonists reduce RLS symptoms, I guess it could have been people with Parkinsons (who also had RLS - Don't know).
I'm also dubious about the iron deficiency theory, logically if it's deficiency in the brain it must be deficient generally. If there's sufficient iron in the body surely it must get into the brain unless the brain is somehow isolated from the brain which in my experience is true of some people I've met, (although they didn't have RLS). RLS due to iron deficiency is known about and I believe, I've heard or read that Iron deficiency RLS is effectively treated with iron. If that's the case it's not idiopathic. If it's known that idiopathic RLS is caused by the failure of dopamine transport, then they'll have to change its' name.
However, if you accept everything said on here (including myself) you'd take massive doses of Tramadol, eat a huge amount of Spinach and chew ground up metal powder, (a guy in France ate a whole car that way some years ago, it took him a couple of years to do it. Now there's a statue of him OR is it actually him?), bathe in cider vinegar while under hypnosis, sleep under the mattress with a bar of soap and make a living by taking out as many lawsuits as you can, in fact do it compulsively.
In RLS we have enough dopamine, it just is a "defect" with the neurotransmitters, and the dopamine cannot cross the blood/brain barrier. The two that are our biggest issues is D1 And D3. The spinal fluid is the dopamine transport system. People with Parkinson's, as an example, ARE LOW on dopamine.
Hi not sure what you're saying here. If dopamine can't get through the blood brain barrier, which way? Is it in the brain and can't get out? Unlikely it's in the brain it's needed so it getting out no problem surely. If it's outside the brain and can't get in? If that's so, then it will be LOW in the brain, even if it's in the blood. So it IS low Dopamine that's the problem.
If it's defective, what's the defect? Is there a defect which prevents it getting through the bbb or is there a defect which prevents it working at the receptor sites.
Anyway if dopamine can't get through the Bibb but agonists can, won't they help by mailing what little dopamine available more effective
NO, I said the transport system is the spinal fluid. So, it comes up thru the spine to the brain. Our bodies make dopamine naturally, as I am sure you know., If we KNEW what the defect was, then we would be closer to having a cure. The National Institute of Health has all kinds of research papers and reports on this, the web site. We also have identified genes that affected. 70% of RLS is Primary or genetic. Even if your parents never showed symptoms one of them could have passed the gene down. They are looking a several more, and the changes to certain genes in RLS. Somehow, the genes get triggered in some people, and some not. Then there is secondary RLS, caused by underlying things, such as someone taking one of the meds on the "Avoid" list. There are excellent descriptions and science in the book Clinical Management of Restless Legs Syndrome (2nd edition to show new dosing and is dated 2014), which is the newest book out there of any value. It is co-written by several doctors who ONLY do RLS, and participate in and manage many useful studies, not like the short little 12 week studies that most pharma companies do. Dr. Earley, at Johns Hopkins in Maryland in the US, started one of the first RLS Quality Care Centers. He has been doing 2 18 months studies, one concentrating on ferritin and iron levels and the benefits , or not. The other one is an 18 month study on the use of low dose opiates for treating refractory RLS. This is important, since there are soooo many people who cannot take the dopamine meds, the anticonvulsants, and other meds used for RLS. For MY personal story, if I did not have the use of slow release pain meds and shorter acting ones, plus a sleep med, I would have found the highest bridge a long time ago. One reason I am constantly on the lookout for any new studies and papers. But, I digress. Dr. Earley does a really good job of talking about dopamine in one of his videos on the Johns Hopkins web site, and also in my favorite book I listed above.
Great, thanks
The video Nightdancer is referring is entitled The evidence of the Iron -Dopamine Hypothesis by Dr Christopher Earley
Other videos on there too eg explaining augmentation amongst others well worth having a listen
Timzz, the currently identified closest to a cause for RLS issue, is insufficient receptors for dopamine on neurons (brain cells) on and close to the substantia nigra,an area deep in the brain. Iron is needed or involved in building these receptors.
We have systems that balance iron in our bodies and keep that balance (homeostasis). For some as yet unknown reason, people with RLS have sufficient iron in their blood and body, but apparently not enough in this crucial part of their brain. A recent paper showed increased levels of hepcidin in people with RLS. Hepcidin is a fairly recently (2001) discovered protein involved in balancing the iron by reducing iron uptake when iron levels in the blood increase, e.g. after oral administration of iron (taking an iron pill).
If you want to read the scientific papers that describe these results and summarise this knowledge, let me know, I’ll dig out the links.
Hi Dasymoo
I have had recently a sleep study to diagnose my RL. It's not in your head Hun. Find a doc that is a sleep specialist and they will help you. My sleep doctor gave me some medication which helps RL
and helps me sleep. My legs go all the time not just at night so I was very exhausted all the time.
As I have multiple chronic health conditions it was just another to cope with but a good network of health professionals can make a big difference.
All the best
Poppyrose1 💕
Your doctor is an idiot!
Nobody know why you get it and there is no cure.
You need a second opinion from a pain doctor and if Tramadol isn’t discussed try again.
I guess opioids are a possible remedy for the pain that some people get with RLS, but it seems a bit drastic and inappropriate if you don't get the pain , I don't. First point of call for RLS is normally a neurologist or a sleep specialist. It's not as if we get much choice here in the UK. I've heard RLS described as a "sleep disorder" and I've heard it described as a "movement disorder". so my GP refrred me to a neurologist. A bit of a choicr about which one, I was told I could see one , but I'd have to wait 8 months, or could see anothet that had a reputation for being abrupt and offhand and wait 3 months. I soon found out he was very abrupt.
It's different in the US I hear.
But even so, I don't think opioids are a first choice for RLS.
I'd be interested to heasr why you suggest it.
Timzz strong painkillers are used for RLS as they work on the urge to move sensations as well as on pain. I am in the UK and my Neurologist put me on Oxycodone. In the States Methadone is the most widely used pain med to treat RLS but rarely in the UK
The Dopamine Agonists used to be the first drug of choice but unfortunately due to the very high rate of augmentation this is getting less and less
About 4 /5 years ago the first opiate was licensed for RLSin the UK it is Targinact and contains Oxycodone
Lots of studies going on now into the use of opiates in RLS as the Dopamine Agonists are causing lots of problems
OK, thanks, I suppose since I haven't had much problem with my RLS being controlled by Pramipexole, I haven't really looked into it. The last few years I have had other issues which have had more of my attention. I have had spells when the RLS sort of erupted out of control. but then Iv'e had a course of clonazepam and it sort of re-booted me.
It's good to know that if I ever do get augmentation there s a fallback position.
There have been some law suits against Dopamine Agonists so that is another reason why painkillers are probably being used more now too
Law suits? Sounds amerikan. Tell me more please
The Mirapex ( Pramipexole, Mirapexin ) and other Dopamine Agonists cause compulsive behaviours in some users 6 eg gambling, spending, sex addiction so this hasbeen the basis of the lawsuits. A Google search will bring up the details
easy to google, you will find a TON of info. Mostly for people who developed compulsive behavior while on a dopamine agonist, more Mirapex/Pramipexole than Requip/Ropinerole. They ARE mostly American lawsuits.
Yes I've found that, amerikan lawsuits, US and Canada, can't find any for UK. Yes for compulsive behaviour, So far I've only managed to find out what US federal law says about this. From this I gather that the lawsuits are successful because compulsive behaviour is dangerous and this outweighs the "not able to sue if it warns you on the label" factor. I haven;t as yet found out WHO the lawsuits are taken out against, is it the manufacturers or the prescribers?
manufacturers
Look for "makers of Requip pay largest fine in history" for burying certain study results. There is a TON of info on a search.
Hi, Dasymoo, I have a good friend who is a hypnotist and he also has rls. He told me that it only helps rls when he is in a trance so really its not much good
Pramipexole 
Doctors
Question
Pramipexole - Confused
