Getting help from my GP

Today I am going to my GP to ask for help , I don't no if I will get it or if she will understand or know about this RLS . So here goes .

[Bettyboop45]

Hope it goes well , I went yesterday and doc was no help at all , I'm single mum and work and so tired as legs and feet playing up , he said just take stronger does off gabpertain ( soory) can't spell , I said its effecting my work etc but no help at all .

[peterk in reply to Bettyboop45]

Hi. If gabapentin helps at all you could try pregabalin which is a stronger version. These drugs don't work for me though they do for many. Ask dfor a referral to a neurologist. OIf you are in the UK they are difficult to find with an interest in RLS.Other treatments licensed include rotigotine 9 a patch) requip, a neuro patch I believe though no knowledge of this, strong painkillers, especially coseine based. Tramadol is a safe synthetic opiate and that helps many. Gmc54 is right about it being pot luck and sometimes you have to take risks with medications. Diydrocodeine is a controlled drug but that one might help. Painkillers I suggest if it's painfal because it can be sheer hell. Make sure your employer knows about it. You ought to be entitled to reasonable adjustments. You will need to walk more than your colleagues and your concentration may be affected. I am a fellow chronic suffer and by no means an expert. Hope you finfd the courage to insist on a referral to a neurologist but finding one that has an interest is difficult. It's easier in the USA.

[suri in reply to Bettyboop45]

Hi i live in the uk the doctors arent very supportive im begining to think they think its all in my mind i saw the physio last week she dident even know what restless leg was so i had to explain to her what id been told at the pain clinic

[Gmc54]

It's a bit of pot luck I'm afraid. I hope all goes well for you. Keep us informed. Good luck

[Hidden]

Stand up for yourself, ask for Pramipexole, it helps me, I can sleep again!! I wish you all the best from The Netherlands. I'm a woman and have RLS for many many years, I'm 65 years.

[nick-the-turk]

doctors don.t really want to know because as i.ve been told [nobody dies from rls] if someone from the medical profession was in my living room some nights i think it would come close. doctors seem not to understand that its not just us who suffer its are families who have to suffer with lack of sleep etc etc lets keep faith that one day a cure will be found even been told by one doctor that its a mental illness thanks to you people ive learn.t alot more about medication for rls thanks

[Hidden in reply to nick-the-turk]

Hi , I no what you mean , but really people do die . The commit suicid . I cut my legs so bad I nearly died from blood loss , I had to have a blood transfusion because I cut a main vain . I felt like a right idiot because I had to ring an ambulance . I had been up for 3 nights and two days with no sleep . It was a very stupid thing to do and it doesn't work not a minute . But I still done it . So people do die from it . Iv noticed reading other story's some are mild and some are chronic . I don't think in years to come it will be called restless legs as many like me get it in there arms and body . I think it's a leg thing more then the arms but still it can affect the whole body . I'm just so glad I found this site it's been a real eye opener.and nice to talk to others like myself who understand . I think understanding it is in its self a help.

[nightdancer in reply to nick-the-turk]

OMG, you just hit one of my pet peeves! "Nobody dies from RLS". Well, maybe RLS in itself does not kill us, but it kills your quality of life, the affects of severe sleep deprivation are staggering in the statistics. A sleep deprived person performs worse than a legally drunk person behind the wheel of a car on a closed course. I saw the training video for that. so, no RLS does not kill, but it takes us to the brink. When one doctor gave me the wrong meds, before I knew better, (tricyclic antidepressants are a no-no for 99% of aLL RLSer's). I was literally ready to jump out my window on several nights for months at 3 a.m. I look back and it is all as clear as it was then, and that experience is my baseline of how MY RLS can get. That is my 10, and all other episodes are bnad, but never THAT~bad, since being given the wrong kind of meds. Please read the treatment page on rlshelp.org if you ahve not already. I cannot strss enough that knwledge is power, and how much we have to help ourselves to get better treatment from "DUD's" "Deliberately Uninformed Doctors" Sad but true.

[Hidden in reply to nightdancer]

I agree about the RLS , in itself it doesn't kill

But the damage it caused can

[Hidden in reply to Hidden]

it does, i know of 3 people who have taken there lives because of RLS 1 a relative, the others i was told about and its definately true

[Hidden in reply to Hidden]

Wow how sad is that . Iv herd of it but not known

Anyone . That so terrible for you . I nearly so very nearly

Came so close to it at times . but it normally stops when

I get so mad with it . I'm sure lots of us have felt

At sometime about suicide but normally it is just that a thought .

Keeley that must make you worry for yourself having already lost someone close to RLS .

[Hidden in reply to Hidden]

nearly got there myself, but found a good friend on here, from the UK, and her help is vital to me no names mentioned,

[nightdancer in reply to nick-the-turk]

What ididt doctor told you that RLS is amental illness. Freak! DUD's are "Deliberately Uninformed Doctors". Lots of them around all over. ;( No, RLs can not kill you all by its elf, but tell your doctor to look up the effects that sleep deprivation has on very system in your body!! I canniot stand ignorant doctors who are too lazy to look up the right information, or are too ignorant to HEAR what their patients are saying!!!!! IN 2013 we NEED to make some noise!!

[Hidden in reply to nightdancer]

No one told me it was a mental illness . I don't think anyone on this chat blogs aid that well not that I can read or see. But yea we do need to make some noise as it needs to be looked into more then it is. We need studies new meds as old ones work but for how long and the side affects are yuk .

[peterk in reply to nick-the-turk]

Hello there. I don't wish to be morbid but I am certain RLS can indirectly cause the loss of life both through meds eventually causing some other problem and for those chronically affected, taking their own life in perhaps hours of desparation. My former GP once told me he had lost five patients to RLS but of course there is not likely to be any documentation on it. RLS is not a mental illness it's a neurological illness. More doctors are getting to know and I suppose sites like this should help. After all Papworth is connected to this site in some way I believe. If that doctor was your GP, change them. The UK was one of the last countries to change it from a mental illness to a neurological won. It has a name called Ekboms disease. That's what it is, a disease, not a way of thinking or your imagination. You are right that they don't want to put money into it because in itself it cannot cause harm. However how many car crashes and accidents are caused by sleep deprivation? Lots I suspect. I've just seen the note below. This proves what I am saying.

[Lulu1976]

I was dubious and thought my GP would laugh me out of the surgery as I had never heard of RLS and went there talking about twitchy legs early in 2012. But no, she was fantastic. She knew exactly what I was talking about, knew a fair bit about RLS, printed me off some information sheets and prescribed me Pramipexole. Other GPs at the surgery have been equally supportive and understanding. I hope you have the same positive experience as me.

[Hidden]

Just got back from doctors . she was great really understanding . I went in after being up all night so i really wasn't going to take no rubbish from her . She looked at me and said have you slept , I said no then she said have you ever thought that this is what causes your insomnia . I just laughed because i know it's the reason . She then asked why I never said anything before . I told her I did about 15 years ago and got laughed out the doctors office . Anyway she is blood testing for iron and lots more stuff . She then said she is trying a drug that people use for Parkinson's disease on a couple of her patience but she said they are finding they just need more and more . She said Iv tried everything with them including valum etc but it works for a bit but then thy need more . So I said at least I will have Proper diagnoses for it . She is happy to try anything that the nhs will let her for this illness . She called it an illness . My partner told her about something eles I have but I don't no I'm doing it . When I sleep I kick out just one big kick not restless legs this is something eles and I keep on kicking out every minute or so , my partner sleeps down stairsWhen I get it . just thank god I'm not awake through that, what ever that is . Anyway it was a good result , I went in all worried like I just knew she would blow me off but she never . I would never have gone to my GP if I had not read all the storys on this site of restless legs . So I'm really really gratefull I found it .

[Hidden in reply to Hidden]

The kicking out while you are asleep is called PLMD so sounds like you have both conditions RLS and PLMD. The only diagnosis for RLS, is by the being awake at night and not sleeping, there is no test. PLMD can be diagnosed by a sleep study.

It sounds as if you doctor knows what she is talking about, so hopefully will be able to give you a suitable med which will help you.

[Hidden]

Oh thanks what does PLMD stand for ? Thank you

[Hidden in reply to Hidden]

PLMD stands for Periodic Limb Movement Disorder. Some people suffer with either RLS or PLMD some unfortunately suffer with both...I only have RLS. All the time you are kicking in your sleep, you are not getting proper sleep, in the morning you feel tried even tho you think you may have slept well.

[nightdancer]

kicking in your` sleep is PLMD Periodic Leg Movement disorder 75% of all RLSer's have this, tooo. You kick in your sleep and it causes brain arousals even though you do not fully wake up. That is why you feel knackered in the a.m. YOu are not reaching the right stages of sleep. PLMD is a real disease and is a cousin of RLS. Gooogle it.

[Hidden]

Wow so I have RLS and PLMD , no wonder I am so sleepy in the daytime . Sometimes

I wake up and think I might as well not bothered to go to sleep .

[peterk]

Apologies. I think I've answered this question twice.