General Opinions

If someone you know came to you asking for your best advice

about Coping with RLS, What advice would you give them?

What qualities make a good RLS doctor and how does your doctor

measure up to those standards?

[Hidden]

Hi Yikes, my GP practice is very helpful, talk to them on the phone about RLS and you get n"oh yes you need to see dre *** " then you talk to him/her, and they same the same, think they should call it "PASS THE BUCK SURGERY"

[restlessinlondon]

Hi Yikes,

My first suggestion would be they try to cope using diet (suggestions of triggers on the RLS-UK website), but also to get themselves checked over by their GP and consider taking medication if necessary. Aside from that I have found it a great help to be a part of RLS-UK and receive the newsletters and also to be a part of this forum. Information can be liberating! My own GP certainly knew about RLS which, from what I have heard, is a good start! Also they were happy to refer me to a consultant.

[Kaarina Administrator]

Knowledge is power. As restlessinlondon says, look at the RLS-UK website, joining is even better! You receive a newsletter every now and again and can attend the AGM etc. Also point them in the direction of this forum. Not all GPs are at all knowledgeable in regards to RLS, hence find out as much as you can first so that you can educate them. Don't be fobbed off. You need to work as a team with your GP on this.

[nightdancer]

Exactly, knowledge is power, and the correct knowledge is power. the more you know, the better you understand it. It does not mean you like it, but you understand why certain things happen. IT is too easy to get into a panic when an RLS attack is going on, so reducing that is helped by knowing what to expect and how to deal with it. Have and develop your own "bag of tricks" -meditation, medication, heating pads, whatever may distract you. IF you get the "eyeroll" reaction when you first bring up RLS to your doctor, then explain. IF she/he is still rolling their eyes, time for a new doctor. Do not be afraid to change doctors id the current one will not do what you know has to be done from the knowledge you gain from REPUTABLE (for strong emphasis)web sites, and if your doctor is not willing to work with you, then time for a new one. many of us have "fired" our doctors on our journey to find the good ones. It may not seem like it some days, but the doctors work for us, and we deserve respect for our concerns and ideas. And, listen to experienced RLSer's who have been thru the process already, and you may save some time. "If a doctor will not listen to his patient he is not a good doctor". From "How Doctors Think" by Jerome Groopman, MD. It is not an RLS book, but can be applied in any situation, and it is eye opening as you read about his training in med school, what they were taught and NOT taught. and how to think. He is one of the good guys.

[Hidden]

Not so easy to change your doctor in the UK, im on 3 different waiting list, to change, as the doctor im with now, doesnt help one bit, and will not look at anything i show him,

Ive been told it could be 6 months before i can change, so that then if i do get refered to a newurologist, that's another wait, as i cant afford to go private, i have to wait, the NHS is great, but boy do they have long waiting list's

[Hidden]

Yes, you are right, changing doctors in the UK is not easy, i think it just depends on where you live on being able to change quickly, or if at all.

Nothing worse than having a doctor who wont listen and help a patient.

[Hidden in reply to Hidden]

Elisse, What steps do you have to take to change doctors?

I live in the USA and we go see whoever, whenever we want

to with some insurances and with others we have to stay

in the network of doctors.

[Hidden]

It works different here in the UK, we dont have insurance like you do in the USA, so we cant pick and choose doctors, our healthcare is called the National Health Service, all doctors work under the NHS, You have to live in the catchment area of the doctor's surgery to be allowed to be on they books so to speak.

If you want to change doctors you have to see if another surgery in your catchment area is taking on more patients. You go to see your GP, for all ailments, if they think you need to see a specialist for a certain illness then you get referred. Otherwise your GP takes care of everything else.

The NHS works by when you start work you pay a small amount from your wages every week, this

pays for your healthcare, until you retire then all healthcare is free. If you are out of work, you still get your healthcare for free. It also includes any hospital visits or stays.

[Hidden in reply to Hidden]

Plus some doctors ask why you want to change, and may not even accept you if they dont think your reason for a change is good enough, another thing is, your doctor can strike you of his list, then your stuck with no doctor until you find one who will accept you on his books

[Hidden in reply to Hidden]

Is there a grievance procedure? I am thinking that

there has to be some upper management that

you can appeal to for some reason such as

conflicting personalities or that you feel more

comfortable with a doctor of the same sex???

They can strike you, sure but maybe you need to

take another approach and ask outright for

specific drugs.. Example...

Doctor .. I am doing every single thing that you

suggested and I am getting no relief of any kind.

I gave it a fair shake by sticking to it for X months

and nothing improved...

Can we try__________? I belong to a RLS forum

that has 11000 members and I am hearing good

reports about that drug.. Many people are getting

better relief with their symptoms.. in fact some

people reported that they have almost no symptoms

at all going on anymore..... if the doctor says no then

ask why not..... come back by giving the doctor another

good reason to prescribe it. .. How about if we give it

a trial and if it doesn't work then my mind will be at peace..

It may not be that simple at all.. but use what you learn

on this site especially the ones who have a lot of

experience with talking to people with RLS...

and you can request the medicines that others are taking..

Keep in mind though that what works for one person,

probably will not for another but I do see lots of people

that agree that some of the medicines do work.. and

those are the ones that you want to target to bring to

your doctor...those names of medicines.

The doctor is trying to figure out in his head what

is good for this rls vs the snake oil man pitches..

and some of those medicines are hardcore with

side effects so he/she has to weigh in on that. They

don't have a ton of time to study up on this stuff...

I haven't been on this site all that long and I am not

one of those people who have a ton of experience

in talking to others about RLS but if you are frustrated,

then you have to change something in your treatment

plan..

I am learning very quickly that I am the one who has

to deliver the sales pitch to the doctor to get the

drugs that I want to try a whirl... and I give them

several weeks to build up in my system.

[Hidden in reply to Hidden]

My neurologist has sent me to another neurologist because her knowledge about RLS was not enough. She sent me to the best one (The Netherlands). She told me: "it may be good for you en for me too, I can learn from her" . So I went to the recommended neurologist and had a long consultation with her, she advised me to stop with the medication for 3 months and then start all over again on the lowest dose. She recommended another doctor to guide me in this proces. I'm thinking about it now....

[Hidden in reply to Hidden]

What medicine did she ask you to stop and

then start back up with? Did she taper you

off of the medicine or did you quit cold turkey?

[Hidden in reply to Hidden]

She advised me to stop the Pramipexole that works for 24 hrs. and the Tramadol, instead a got to use another morfineproduct (I don't know at this moment which one) but because of my apnea I need to be guided by a specialist in apnea AND RLS. I do not have to stop at once but slowely lessen the Pramipexole. I'll keep you informed, because I'm not looking forward to it...

[Hidden in reply to Hidden]

Hi Yikes, yes there is, but it doesnt work as it should, my cousin complained about the attitude of a neuro they sent her to, she was quiet ofhand with her, so she then got to see the one she used to see, and he then said he didnt need to see her anymore ?? he didnt need !!, doctors tend to stick together, you cant win really,

[Hidden in reply to Hidden]

well my cousin used that system, P A L S, its called, and made her complain, then she was sent back to her old neuro, and thats when he told her he didnt need to see her anymore, they stick together no matter what

[tremors1 in reply to Hidden]

People to complain to, top of the tree the B.M.A. British medical association, hope you get some satisfaction. B.T. Swindon.

[Hidden in reply to Hidden]

Ellsie- Does the NHS pay for the medications or is that an additional

expense? Do you have co-pays or a deductible to meet? If

you do have to pay out of your pocket co-pays for medicines,

is there a cost support for those medicines (the drug company

picks up the cost of the co-pays for your drugs)

In America, you get what you pay for-seriously. Most people

have a co-pay and or a deductible for medicines.. some insurances

cover the entire medication cost.. We have a tier system over

here for some... the more new and expensive the drug...the

more money we put towards the drugs. Generics are

heavily prescribed. The co-pays are far less than picking

up name brands.. there are patients on the drugs when they

first come out. (Chemo drugs have 18 yrs patient in the ingredients)

so people have to turn over to charities and private groups

to meet those expenses..

We are getting a health care reform over here so it will be

a trying time for medical care and drug coverage. Most of

us are in the dark about how all of works.. what it includes

and what's going to change for us...doctors and all.

[Hidden in reply to Hidden]

Depends Yikes, if your working you pay so much towards your medication, a set fee for each item, £7.85 now i think, but children, pensioners and unemployed dont have to pay for theirs. Plus if your working, you pay direct out of your salary towards the NHS

[Hidden]

Yikes, i am very lucky with my doctor, he has let me try everything i have asked to try for RLS, he is flexable with me, because he knows how sensitive i am to all the meds. When the Neupro Patch was first approved over here for use for RLS, i was told by a good friend who lives in the USA, who had seen it online somewhere. I went straight down to my doctors to ask for it, my doctor hadnt yet heard that it had been approved, he looked on his computer and in his doctors book, nothing about it. BUT, he knows me and trusts me, so let me have the patch. He knows i belong to support groups and my knowledge of RLS, is probably more than his. Yes, we pay towards our prescriptions. Also doctors do give the cheapest drug first to see if they work. The government picks up the bill for everything we do not pay for, they give a budget for the doctors and hospitals. It cost the government millions to keep our healthcare going.

[Hidden in reply to Hidden]

My cousins doctor knows her very well also, and he knows her knowledge of RLS is as good if not better than his. She has been at the same gp practice for 34 years now, and its got very big over time, i think thats part of the problem really, you cant get to see the doctor that knows you, so they can follow your progress, as they used to before, you get passed from one doctor to another, and have to repeat your problems over and over, and each doctor will have their own take on how to treat you.

Elisse i know you will agree that its the taxpayer who pays for the NHS realy it all comes out of our money, so we do pay, one way or the other

[thedragon in reply to Hidden]

that is one of the major things i hate ...no continuity of care!!!!

we had the most dreadful time when my mum was dying all down to this problem. we had a list of complaint as long as your arm, but really were too upset to do anything about it at the time. it was really inhuman and disgraceful!

[Hidden]

Yes, we do pay in one way or another...

I found this article on our National Health System, slighty off topic, but as someone was asking how we pay etc etc, i thought they might be interested and how it is different from their system.

londongirl.hubpages.com/hub...

[Hidden in reply to Hidden]

Thank you What a great article to spell it out for people

like me who wonder about this stuff. Heath forums based

in the USA talk a lot about cost and how to pay when you

have no insurance or co-pays and tier systems are way

too high. I also took a long hard look in Canada... that's

also very different. There are a lot of delays for testing,

MRI's and for getting into specialists.

It's not that uncommon for a neuro doctor to be booked up

6 months ahead or longer over here but when there is a

real threatening health crisis, they are right there.

[Hidden]

We also have waiting lists to see a specialist or to have operations. Life threatening illnesses are seen quickly, as in if someone finds a lump anywhere which could be extremely serious, then they get you to see someone quickly.

Glad you liked the article.

[gypsy49]

i was quite lucky i got to see a neuro dr within couple weeks once i managed to see a Dr that understands about RLS as for waiting list think it depends where you live either big city or small town thankfully small town things move a lot faster than cities where hospitals and Dr's are concerend i see my Neuro Dr every couple months trying out different things so far nothing worked ggrr see him again at the end of this month tell him last lot meds didn't work then he's putting me through to another specialist hopefully find the right combo of meds ,

[Hidden in reply to gypsy49]

good luck, hope they find something to help you x

[gypsy49 in reply to Hidden]

thank you Tallula.... x

[Hidden in reply to gypsy49]

Given that there are only a handful of RLS drugs, do you

have one in mind that you wanted to try gypsy49?= ]

Waiting until the end of the month seems like forever?

[gypsy49 in reply to Hidden]

nope.... tried everything so far so no idea what drugs at the moment im on only painkillers that do nothing nothings worked what had worked did only for couple weeks then RLS went on rampage.... all hell broke loose think one reason why he going send me see someone else find out why im so immune to meds so quick same with any meds even antibiotics anything heyho..... it'll get sorted lol hope everything going ok with you Yikes

[Hidden in reply to gypsy49]

I do wish that narcotics helped you. You might be one

who needs a combination of medicines to deal with

rls. What a bummer that you are so immune to even

antibiotics! Do you by chance take antacids? I just

was reading in a magazine that said that antacids

can block the working medicines out if taken

close together.

I'm doing okay these days.

[gypsy49 in reply to Hidden]

nope not on antacids ... my daughter immune to antibiotics too and can't take penicilin ... hopefully it will be a combo of meds that work longer than last single meds lol tried most painkillers ones im on now only make me high nothing more for very short time usually try grab sleep before they wear off , lots meds out there that block others working together thats when you put your trust in dr that he remembers which ones your on lol,

glad your doing ok these day hope you keep it up

[Hidden]

Gypsy49 , you and your daughter are truly unique.. It has me

wondering though if anything will work for you if you ever have

an infection or something like that....I can't even imagine.

[gypsy49 in reply to Hidden]

only thing i do get every year Yikes is a chest infection never had a cold in my life of course RLS and Fibro been lucky really where's my daughter she used to get awful ear infections due to gawd knows how many gromits she's had put it and ops on her ears , my main thing is the RLS along with fibro pain ggrrr be good to have a proper sleep lol like most of us on here , im sure there's other people like us out there might not be as unique as you think , sorry took so long to reply i don't get email telling me when someone messaged on here ggrr ,

[cumoneileen]

Having RLS for 68 years. out of 5 doctors at my surgery only one recognises RLS. For years I was given sleeping

tablets anti depressants and all sorts, my doctor (when I can get to see him ) is very good. He helps with dosage

and tweaking amounts I take and sorts me out. I take( ropiorole)

[tremors1]

My husband has suffered with the restless leg syndrome for over twenty years, for years whenever we told anybody in the medical field, they would say, this is very common, theres nothing we can do. About a month ago while attending a doctors appointment, they put him on the flax something, it has helped, but even during the day if he seats with his feet on the recliner on the sofa, it will start again. I think they give you the tablets to get rid of you. Hope you get some respite from yours. Barbara Tremblin.