Apparently RLS is now now classed in ... - Restless Legs Syn...

Restless Legs Syndrome

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Apparently RLS is now now classed in America as a psychiatric disorder!

40 Replies

In the Huff post for healthy living I have just read in an article by Mark Rubinstein, that the American Psychiatric Association, have just published their new edition of disorders adding RLS as a psychiatric disorder! I find this scandalous, as I do not believe it is one, it, as far as I know is a neurological condition, what do you think?

This could have a lot of repercussions on our treatment, so please take a look,

Take care, Cazx

40 Replies
Mispiernas profile image
Mispiernas

I think that is why is best not to tell people too much about how we feel. They will not understand and quick judgement will classify you as mad. Having lost my daughter after 22 years of looking after her and loving her like no one else. I watch her suffer since she was born and as she grew up she learn to hide from the world how she fell. Her last ten months in hospital were terrible and i lost her even before her most terrible death. I thought that love will last forever... Stop all the clocks... But now this. Choosing GPs and consultants and who to tell becomes even more important.

Rubylane25 profile image
Rubylane25 in reply to Mispiernas

Keeping quiet, whether about illness, homosexuality, racism only makes one become part of the continuance of the problem. That would be like the holocost when so many knew what was happening and kept quiet, did nothing and six millon people lost their lives...sorry but it is only when people speak out that things change...Nelson Mandala spent 27 years in prison because he spoke out and in the end was Prime Minister

I have just read that cazbaz on another group this morning. For years many doctors and people in general have said its all in our minds.... :P

WE know its neurological, and i am sure the intelligent doctors know it too. I know my doctor doesnt think its all in my mind.

I certainly will not be keeping quiet on how i feel to anyone, Mispiernas,. otherwise, RLS, research and awareness would get set back years....

wow, how dare they, and i will certtainly not be quiet, i have nothing to hide, i didnt do anything wrong, i just got an illness, so i dont need to hide it away

nightdancer profile image
nightdancer in reply to

see my post. That is not what they are saying at all. I have been with this from the beginning, so more than 2 years. ;)

in reply to nightdancer

i was talking about my RLS nothing else !

nightdancer profile image
nightdancer in reply to

me, too. They are not calling RLS a psychiatric disorder if you read the whole thing. :)

in reply to nightdancer

i did read the whole thing and i do know what their are talking about !

What worries me, is if they try to change the way we are treated, such as the dopermine and painkillers, I for one know that antidepressants are no good for me, they just make things worse!

I just do not understand how they can do this, we need to do something, but I don't know what, they are a highly influential group.

Cazx

I cant see that happening, regardless what the article says. The experts on RLS know more than these people know about RLS. I will not be worrying.

I am hoping Nightdancer will come on to explain the article more and better than i can. Its mostly if i understand it right, to do with the USA and insurance and coding, which is used by their doctors when patients have blood tests etc. Some of what you read, can make it sound as if we are all nutty and need help in that area.

nightdancer profile image
nightdancer

No, speaking to the title of your blog, that is not what they are saying at all. I have read the manual and been keeping up with what changes would come and this was one of them. It is misleading how some press are reporting it. A history of this change to DSM-5 Manual............

When you read the whole thing, you will see that it says that RLS is a "very soundly neurologically based disorder". The reason why they added it, but they are NOT calling it a psychiatric disorder. What they are saying is that the severe sleep deprivation that can be caused by RLS can also cause social and mental disorders. In other words, they are saying diagnose the RLS, and THEN the related depression. Don't just assume that because someone is not sleeping it is because they are depressed. The other main agenda, and that IS in the UNited States, this DSM-5 manual of Psychiatric Disorders is known in national and international circles as the "bible" for disorders. It is used in court by lawyers. People will use this information to suit their own agenda, like the "it's all in your head people". What the TRUE reasoning behind this is, is that NOW, because RLs is listed in this book, it now has it's own billing code to use on lab slips, etc, instead of the doctor having to check off anemia to get ferritin levels tested. This all ahs to do with the insurance companies in the US. One more reason not to use WED for a name , instead of RLS, since now RLS is listed in the medical "bible" and has it's own billing code. In the manual it only refers to WED, as RLS "also known as Willis Ekbom Disease" which is only being used in certain and Canada. It is called RLS practically everywhere, and most doctors over here will now never use WED, because RLS has a billing code, giving it much more credibility. This has nothing to do with you people in the UK as far as that stuff goes, but it clearly states that it is neurological biological disorder, and does NOT say anywhere it is a psychiatric disorder. Did we all look at the slide show and actually read what they quoted fro the manual. What I just wrote above. ON ONE is calling us "CRAZY", at least not there! I hope this clears it up a bit. I have been on this for over 2 years, so I know exactly what and why they are doing this. For diagnosing, this is a good thing, for the "new" name it is bad for the people who support that, because it took so long to get RLS recognized with a billing code in the US, there will doubtfully never be one for WED. That is the whole point when you dig into it. Again, no one is calling us nuts in this book! ;) so, take a breath, and really read what has been published. Some people will always call us crazy, but NOT the manual, which everyone should check out. If you want to see a lot of things about it, just google "DCM-5 and restless legs syndrome". Jackpot! :)

in reply to nightdancer

Thank you so much, for explaining it all.... I knew you could explain it better than i could, as you would understand what it all meant.

The interesting part also is the name RLS is still used and the name WED is used after, as they say, RLS, also known as WED. :) Not the other way round....:)

in reply to nightdancer

That is all very well, but if the press are reporting it as a psychiatric disorder, that really does not help our problems being taken seriously, but thank you for clearing this up, after all, most of us do not have the medical training to understand the manual.

I only wanted everyone to know what the press are reporting. Don't tell me to take a breath when what i said was a true representation of what everyone who reads these articles will think.

I was not scaremongering just trying to get a point across, and now I feel belittled, sorry I will not bother you again.

Cazx

in reply to

Cazbaz, you didnt bother me, or a lot of us, and anyway, thank you for putting the article on, it was very interesting, keep them coming :D

in reply to

Thanks Tallula, I truly did not mean to upset anybody, but my point is that we are interested enough to check this out thoroughly, but most people will not, and just take it at face value.

I appreciate your comment, as I truly was so upset by the tone of the comment that Nightdancer gave me, I was in tears. Just not well and maybe over sensitive right now.

Hugs all round, and and thanks again for your explanation Nightdancer.

Cazx

Gannet profile image
Gannet in reply to nightdancer

Well done and many thanks Nightdancer for going to the trouble of posting this clarification.

in reply to Gannet

I am glad someone has thanked Nightdancer's explaination....of the article. :)

in reply to

Ellise

I did say thank you to night dancer, I just felt upset at the way I felt she was talking down to me, just me being stupid I guess, I have been very poorly with other problems, and took things all wrong I think.

sorry all around, I never meant to cause any trouble, please forgive me if I have caused upset.

Cazx

in reply to

you didnt cause any upset Cazbaz, far from it, i welcome all your posts, and you did'nt take things the wrong way. :)

Hopeless100 profile image
Hopeless100 in reply to nightdancer

arrgh, if the can fix RSL I will believe in the Tooth Fairy, Hogfther, Death personified and Republicanism,

Well i am sorry everyone has taken Nightdancers comments to heart. I only wanted you all to understand what the article meant. so no one got in a panic.

I also wont bother again to try to help out.

nightdancer profile image
nightdancer

Good Grief. I said the title was misleading and I have written to the newspaper along with others about the title. The REST of the article is reporting what is in the manual, and it says CLEARLY it is a neurological disease that MAY cause social problems and some depression, and/or mental disorders. They are saying to diagnose the sleep disorder first, NOT the depression. If you guys are so mad about, and I am at some things then write to the newspaper and the web site. I do not know why you guys are getting all upset, except for the title of the article. Did you guys click on the blue link in the article and go to the slide show. That is where it clearly quotes the manual as RLS being a physical disease. Sorry if you do not like my explanation, but it is the God's truth, and I DO know what I am talking about. When you see something in the press that you do not like, do something about it then. That is all I am saying, and it is something that will have to be explained over and over for the next few months, so you should get some knowledge about it, so you fully understand it. I got involved this 2 years ago, because it coincided with the ridiculous name change in the US, knowing that this was coming out in the DCM-5, which is the short name for the manual. Google it. ;)

nightdancer profile image
nightdancer

For people who have not read the article, I highly suggest you do. I notice no one put the link up. IN the middle of the article there is a blue link to click on that says "15 new disorders". Clck on that and go thru the slide show til you get to RLS. I do NOT agree with everything on that list. For example, they are combining Autism and Asperger's as one disorder now, which is sooo wrong. My nephew is autistic and we know the difference. grrrrrr but DO read what they quote from the manual on the SLIDE SHOW about RLS, and the hysteria should stop. Like I said the title is extremely misleading, so I have written to them about that. They cannot control what the manual says, but they could report in a more responsible manner, but that is not what the Huffington Post does. they do bring up the billing codes (officially RLS in the US) and "cooked" psychiatry in the body of the article itself. So, read it and draw your OWN conclusions and really read it. huffingtonpost.com/mark-rub... If the link does not work, type this into your address bar and you will get to it. ;)

in reply to nightdancer

i read every bit, and clicked on the blue line !! and saw all the other illness that were listed there!

thedragon profile image
thedragon

Restless Legs Syndrome Given its solid neurological basis, some psychiatrists, including McHugh at Johns Hopkins, wonder why the disease, characterized by uncomfortable urges to move the legs when lying down, wasn’t given full DSM status long ago. But scientific and genetic research have advanced the medical knowledge of the disorder, which is now also identified as Willis-Ekbom disease, since the previous version of the DSM. While about 2% to 3% of adults are severely affected by it, up to 10% of people in the U.S. may have it, according to the Willis-Ekbom Disease Foundation (formerly the Restless Legs Syndrome Foundation). By giving official diagnostic status to the disorder, which was previously classified as a “not otherwise specified” form of dyssomnia, the DSM-5 may promote more precise diagnoses and treatment of restless legs syndrome, psychiatrists say.

Thankyou cabal for the link....reading the above text it certainly sounds to.me that rls has been added to the list as a psychiatric disorder. So sorry nightdancer..what you are saying doesn't really mean anything when reading the reported text. Most of the population read the press and not medical reports so it will come across that rls is a psych problem to the general population..

Sorry you felt put down cabaz....that was not fair!

Willie416 profile image
Willie416 in reply to thedragon

It seems to me that with your quote from the DSM-5 you would have to agree that they are not saying RLS is a psychiatric disease, just from the first sentence. There is no other way to interpret that statement. I am catching up here, but saw the Huff Post article, and it was "misleading" as sated by others here. So, I fail to see to the problem. But, I am new here, but not new to RLS. As far as I can see it was one article on one site that did this and the entire press for the US is not reporting RLS as psychiatric disease. I would assume that if you did not like that article, you would have emailed the Huffington Post? That is what I would do. Like others have said it does no good to sit back and do nothing. That is no help to anyone. I use to be afraid to speak up, but not any more!

thedragon profile image
thedragon in reply to Willie416

I totally agree with you. Sitting back and doing nothing doesnt help! And I certainly don't sit back My point on this thread was to try and put across the fact that the words rls and psychiatric are used in the article at the start.Many people will just see those words and not read the ins and outs of the article if you see what I mean. Sorry I'm finding it hard to explain what I mean.

nightdancer profile image
nightdancer

it says, "solid neurological basis". IT means that it will give psychiatrists more info into the epidemiology of RLS, and what can come from it, to help them determine why their patients might have depression or panic disorder, etc, instead of diagnosing depression first, it will help them to diagnose RLS first, or sleep deprivation that CAN cause depression. "Solid neurological basis" When they say psychiatrists have been wondering why RLS was not given full DSM-5 status, that is them saying they do not why RLS never had a billing code before for doctors to use. It all comes down to insurance and billing codes in the US. That is all I am going to say on this subject, since when you get into billing codes that only affects the US. IT DOES mention that in the body of the article. I don't know how better to explain it, so I will give up now.

thedragon profile image
thedragon

I think the point the op was trying to make is that rls has been added to a dictionary of psych disorders. If it means more research or better insurance codes or it can lead to depression or whatever..... that is not the point. It is now listed as a psychiatric disorder in a medical dictionary.....(not bible !)

thedragon profile image
thedragon in reply to thedragon

And I feel it will damage awareness with the general public who won't read the small print . " oh rls...one of those psych things....all in your head ..." We will.be seen as a bunch of loons!

Hi dragon, having read not only the article, but many others as well, you are correct. I do agree with you, and it does have international implications, so is not only about billing codes.

There has been a lot of controversy surrounding the DSM5, which as you say is not a "bible" , but is in usage for many reasons.

I do recall a discussion on here in October last year, when it was said that people hate that RLS is in the DSM at all.

No matter how you look at it, RLS is now classed as a disorder of disomnia ( sorry I hope I have spelt that correctly ) even if it has a neurological basis, as you say many people will not understand this, and think it is a mental illness.

I will not be surprised to hear a lot more about this in the press and on line, as it does seem to have been a controversial decision, which will probably come into use here and elsewhere.

As was said earlier in this discussion, the DSM5, is referred to not only in America but internationally too.

I hope that RLS can be reclassified as a physiological disorder for billing purposes, as there are now a great many more reputable studies done in this area, and to accept psychological status just for billing purposes seems a step back, not matter how it is looked at to me.

This has been an interesting discussion, and I think I for one understand this situation better now, thanks to everybody's contribution, but I still believe as you do, most people who read this in the press do not have the motivation to check it thoroughly as we do, and will believe that RLS is at best a mental disorder, if not think it is all in our heads!

Take care,

Cazx

Tiredparent profile image
TiredparentRestless Leg Syndrome

The Administrators of this site have been carefully monitoring the comments following this blog and the one entitled 'Tea and sympathy'. We hoped that people would feel that all had been said that needed to be said and walk away. Clearly that hasn't happened.

As we have previously stated, we do not wish to intervene and play 'Big Brother' unless absolutely necessary and hope that as adults, people will treat each other with kindness and respect. The forum is supposed to be a safe place where people can talk about their RLS and gain help, support and friendship.

The guidelines below say:

•'Be in the spirit of the site: to share, inform and support

Please don't do this:

•Name and shame identifiable individuals

•Be abusive, malicious or deliberately misleading'

If people break the rules of the site, such as advertising products or naming and shaming - as stated above, then yes, we will step in.

Our role is not to act as judge and jury. However, the situation that has developed is complex and involves lots of people. People are getting hurt and are feeling unsupported which is not true to the spirit of the site. It is debatable whether people are being abusive or malicious. Although no one has named and shamed, it is very clear who the comments are directed at and so they have effectively been named and shamed.

In a forum, especially one with so many members, there will be differences of opinion. What do you expect us as administrators to do? Intervene like teachers in the playground? Ban or restrict someone if they say something which upsets someone else? We could easily delete all the comments in this and the other blog but then the good stuff in them is lost along with the bad. We are normal RLS sufferers with our own families and lives. We do not have the time or inclination to 'police' the site in this way. Please do not bring onto our forum what is mentioned in other RLS forums as it is not helpful. Some are private between groups of RLS sufferers so what is said is not necessarily visible to a wider audience.

More than enough has already been said in these forums.

PLEASE CAN WE ASK THAT NO MORE POSTS ARE ADDED TO THIS.

If you want to send me a private message, you are very welcome.

With thanks

Rosie Braidley (tiredparent)

Vice Chair RLS-UK and site administrator

Daragh profile image
Daragh

Good evening all,

Having read through various recent threads I would like to strongly reiterate what Rosie wrote. Once again there are undercurrents, unhelpful undercurrents, to some of the comments being posted. Once again these comments are being used to subtly attack other forum members. We have previously requested that people do not do this and for the past few weeks it was very encouraging to see that this was being respected. This seems to have changed over the past few days.

Please treat each other with respect. If you attempt to undermine another user, to bully them, to embarass them or to subtly 'have a dig' at them, we will take action. We will not be issuing any further warnings. Those of you who we feel are breaching the rules will be immediately restricted or banned. If you wish to continue using this forum please respect the rules.

Thank you.

Daragh (Chair, RLS-UK)

Rubylane25 profile image
Rubylane25

Definitely a neurological problem. My doc is a neurologist and told me it is an imbalance i n the dopamine in the brain in the front right lobule of the brain. However after all the side affects of the different kind of drugs that are used to treat it.. They themselves, the treatment i mean can invite social problems...that such as requip, mirapex and sinnemet causing obsessive compulsive disorder.

psychiatric disorder? does that make it easier to apply and

get accepted for a physical and mental disability?

Sure wish that in the USA, they would grant it on that alone.

I have RA, Parenthesis, RLS, PMD, MGUS and they still are

denying me disability. I may have Bone cancer to add to the mix.

I even have a panic disorder that causes me to stay in my own

house unless I am taking Paxil.

Rubylane25 profile image
Rubylane25

I live in Canada and it is classified neurological not sure about the states.

Hopeless100 profile image
Hopeless100

Great, just tell me how to stop it and I will believe anything.

Mona23 profile image
Mona23

Hidden, what has happened in the world of psychiatry is the classification system has changed. Yes, there is still a DSM, but mental health professionals have to be able to use the ICD 11, which is a classification of all illnesses/disorders/syndromes (International Classification of Disease). So mental health professionals now have to (in most cases) be aware of any disorders that may have an IMPACT on mental health - and RLS does, in many/most cases. I read the relevant page in the DSM 5, and have lifted this statement: “The disorder is not related to anxiety, or a medical problem.” That does NOT imply it’s a psychiatris condition; it’s considered a Sleep-Wake disorder because that’s the effect it has on people. There is no treatment plan offered; mostly just coping with the various side effects. There is NO suggestion that it’s psychosomatic and the reasons we all know for why it might happen, are listed, along with co-morbid (co-occurring) disorders to rule in or out, like arthritis, bruxism, fibromyalgia. So not to worry - no mental health professional worth his/her salt will tell any of us we’re making this stuff up, or we’re crazy, or “it’s all in your head.” If you hear those things, run from that professional! :)

Mona23 profile image
Mona23 in reply to Mona23

My apologies to you all. This question about RLS being classified as a psychiatric disorder came up as NEW in my email this morning, and I responded before looking at the date in the forum itself - 4 and 5 years ago the question was being discussed. Please feel free to delete my post and this comment if necessary.

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