What are the keywords I need to use with my GP?

Hi I'm a newbie to the forum, had symptoms for some time but having trouble convincing my GP to refer me for further investigation. Tried most agonists and lifestyle changes with poor results. Had recent spell of corectal cancer and had diabetes since 2005. I am confused as he says RLS is not neurological! Like most with this condition I am now seriously down due to poor sleep and life quality is not good. Any suggestions?

30 Replies

  • Take some info along with you which says RLS is neurological.....we hear all the time where doctors just dont seem to know what RLS is or believe its neurological, it makes me mad, in this day an age ALL doctors should have some idea...

    You say you have tried most of the agonists, so your doctor must have prescriped them to you at some point. So why would he say its not neurological if he gave you them.

    If the agonist meds didnt work for you, there are other options to use. Look at the NHS website and put in RLS in their search, it should give an explaination of RLS and the treatments which can be used...thats of course if you are in the UK..

    Look up RLS and diabetes it can go hand in hand for some...

  • I am type 2 diabetic and am having very hard time sleeping. I feel jumpy in arms, legs, back and neck. Especially shoulder blades all I want to do is move and flex them. I tell my husband I wish I had a stretching rack so I could get some relief. I am thinking of going to a chiropractor , any thoughts on this?

    Thank you for input

  • Elisse of course is correct.

    My advice would be, to remember that 80% or so of patients attend with pain and or tiredness so you need to stand out particularly if your GP isn't RLS sympathetic.

    To get my first treatment I took my worst day and presented as that and that it was like that EVERYDAY!!!! Infrequent or variable will drop you down the list.

    Never admit its OK until it really is, remember you could find after 2months the drugs no longer work, keep silent, encourage Dr with little improvements only!!! Manage your GP!!

    Finally STAND your ground and change the GP, even within the practice until you get a suitable level of help and you need it and your need will grow, I dont recall anyone getting better.


    Bob M

  • Stand your ground. yes, sir! ;o) You have to obviously get another doctor or really get irritated with him and show him reputable info about RLS. It sure is neurological. Did he say what he thought it was if it is not?? Tell him you want proof that it is NOT neurological. He will not be bale to do it, and do not let him tell you it is psychological. rlshelp.org will really help you.

  • tell him to look in his medical book and send you to a neurologist

  • Sorry that it's not the best of times in your life. = /

    Keep on this panel and read some other posts that

    will give you better understanding and hope.


  • I suffer with rls and osa. the sleep clinic diagnosed my rls..34 movements an hour.perhaps a referall to a sleep clinic may be another option.


  • Just for the record, a sleep study doesnt diagnose RLS, you have to be awake to have RLS. Unless you were awake wanting to get up and move, then they would know you have RLS. If you were asleep and they recorded the 34 movements an hour, then that is probably PLMD which happens while you are asleep.

  • Then you know better than my consultant dr dev bannerjee who has been on tv many times and is well known for his knowledge of sleep disorders,he also prescribed ropolonine which i think is to try and treat rls.just for the record.

  • do you mean ropinerole ??

  • Sorry i seem to have upset you. But, it is as i said. RLS, happens when you are awake not asleep, it stops you from sleeping, which is why without meds we pace the floor at night unable to sleep... I am not saying you havent got RLS, but the sleep study shows sleep disorders while you are asleep. so would show you could have PLMD, Periodic Limb Movement, which happens when asleep, i see you also have OSA, which would also show while you were asleep. RLS is diagnosed by 4 criteria, its how you or your doctor would know you could have RLS.

  • Ropinerole, and other dopamine agonists are one class of meds that are used to treat RLS, PLMD and Parkinson's. That class of meds was used for Parkinson's first for years and years, and now it is approved for RLS and PLMD, along with other classes of meds, like anticonconvulants, used fo course, first, for epilepsy and seizure disorder. This may help with the pain some people get wth RLS, so there are many meds that can be used. First line of treatment for RLS or PLMD is Parknson's meds, but they do not work for a lot of people, like me, so we have to move on to trial and error until we do find something that works. If one thing is for sure, different meds work for different people, and all we do is talk to our doctor and try and get the best treatment we can get. :o)

  • i also know that rls keeps you awake, so i does get diagnosed in sleep studies, its more PLMD that is diagnosed with a sleep study, THAT DOES happen when your asleep, my neuorlogist Mr Nicholl told me this

  • typos sorry !!! so it does not get diagnosed in sleep studies

  • So if rls keeps you awake then a sleep study will show this .as my sleep study did ,which was my point in the first place, i really dont think i have been misdiagnosed so my sleep study showed i had rls.

  • i didnt say you dont have rls, what i said was rls keeps you awake, you cant sleep when you have an attack of rls, so, so you follow the criteria for rls when you discuss it with your doctor, plmd will show,and osa, so, maybe if your legs move when your sleeping, it could be plmd, so maybe you have that also

  • by the cringe!!!!!!! is everyone suffering with sleep deprivation hehehe. niah my reply was to elisse who pointed out a sleep study doesn`t diagnose rls ,but in my case it did,so i was trying to be helpful to ermmm badnightbear and suggested if all else fails a sllep study may work. i now regret my helpfullness....after being jumped all over by the heirarchy.

  • who jumped on you i certainly didnt, we try and help one another here, not accuse people of jumping on them, and i wasnt aware of any restrictions in putting a comment on any questions on here, are you ??

  • Well i dont remember say there was restrictions do you? NO. And once again it wasn`t aimed at you. You just hijacked an educated discussion i was having with another member . people have different opinions and yours isn`t always the right one. shock horror,

  • how could i hijack an open forum that we are all allowed to post or comment on??

    yes it was aimed at me as i am the only one mentioned, but not the only one to comment n this thread, i see there are a few of us commenting here, 4 or 5 at my last count.

    and i certainly know that im not allways right, unlike some of us.

    and im not shocked or horrified at your attitude.

  • After you fall asleep, your legs or arms may begin to jerk or move. These movements are called periodic limb movements. They can wake you from sleep, which adds to your being overtired. Although periodic limb movement is considered a separate condition, it often happens to people who have restless legs syndrome.

    Taken from web md

  • Although most RLS symptoms occur while sleeping, any period of inactivity can increase symptoms. A vast majority of people who have RLS also have another condition called Periodic Limb Movement of Sleep (PLMS) which is characterized by involuntary limb movement during sleep. These movements can occur throughout the entire night and occur every 15 to 40 seconds causing significant sleep disruption.

    Taken from Valley sleep centre website.

  • Restless Legs Syndrome (RLS) and Periodic Limb Movement (PLMD) are two disorders that are very similar in their signs and symptoms as well as their treatment. It is very likely, but not always true, if you suffer from one, you may suffer with the other as well. The primary difference is that RLS occurs while awake and PLMD occurs while sleeping.

  • taken from the sleep managment institute( see above)

  • I am going to put a commenet up here from what I know to be true. Elisse is right. RLS cannot be diganosed in a sleep study, but PLMD c an. many, many octors and patieets mix the two conditions up, or even know the difference, but lump it all together anyway, and just say RLS. PLMD keeps your sleep partner awake, but not you. IT can cause hundreds of tiny brain arousals, which make it so we don't reach the right stages of sleep. But, the dignostic criteria for RLS is that urge to move while you are awake. PLMD is diagnosed in sleep studies, and that is Periodic Leg Movement

    Disorder. wemove.org rls.org rlshelp.org sleepfoundation.org webmd.com health.com (Time Inc) all of these web sites a lot more talk about RLS and PLMD. Not all doctors are right or explain themselves well, but these are facts easily proven that RLS and PLMD are two distinct physical ailmenets. Not all people with PLMD have RLS, and vice versa, but lots of us do have both because both are so closely related and treated with bascially the same meds. BUT, there is a difference. That is what I have learned over the last 15 yrs of leading other online support groups for RLS and PLMD, and it is stated frequently that the only way to diagnose RLS is for the physician to listen to the patient descrbe their symptoms, because there is no test for RLS at all.That is why they have a lits of diagnostic criteria for rLS on all of those web sites. :) Only for PLMD is a sleep study used. They may say RLS, but they mean PLMD, because that is the only thing a sleep study can find as far as legs go. Ask the RLS expert on rlshelp.org about sleep studies. The RLS Foundation has info about sleep studies and how RLS is dignaosed. Ok, I typed what I know to be true , for sure, so take it any way you want to, but thse web sites will not contradict what I said and what others said. RLS has no diagnostic tests. Every one of those web sites will say so.

  • Thank you very much nightdancer, maybe the discussion will now be closed...

  • Well i am talling you my plmd or rls whatever you want to diagnose it as ,WAS diagnosed on a sleep test by dev bannerjee the leading consultant in sleep studies in GB , Now maybe the discussion can be closed . you can all remove your chuck wagons from the circle and trundle off.

  • In relation to the original comment, I would just like to add my experience with my GP..I went to ask for wellbutrin (which I cant have as i am in the uk) and she said it wasnt an antidepressant which I knew it was from advice on here! anyway when I went back the next week, she was full of apologies and said she had spent the weekend researching rls and related stuff as she hadnt known much about it. I am thinking that younger gp`s, not so long qualified are still keen to learn and some of the older gps think "been there , done everything, no more to learn" Just a thought!

  • Yes, i think you are right thedragon, the older gps also do not like anyone trying to tell them stuff...I mean as the patient we should just be listening to our doctor and going by what they tell us, when we probably know more than our doctors they dont seem to like it. Not that all doctors are like that, but some seem to be...

    So good on your doctor to actually have done some research in her spare time. That i think is quite rare for a doctor to do that...

  • well i agree with the last bit of your comment here elise, "no more to learn", ive had this attitude more than once, and i think have my legs for a few days, then you will wont to learn :(

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