New to the Community

Who treats you for this disease? What kind of doctor should

I be seeing? I am seeing a Rhumy for RA. He's the one prescribing

and treating me for this.

I am really in a bad way with RLS so Please tell me what kind of doctor

I need to be seeing.

[Hidden]

Are you saying your Rhumy is treating you just for your RA or have your been given something for your RLS aswell..?

My own GP is treating me for my RLS, he understands and gives me what i need for mine.

Some GP's do not know enough to treat RLS, and you can get referred to a neurologist. But i must say sometimes even a neuro can be useless.

Can you give us some more info, like are you taking anything at the moment for RLS.

[Hidden in reply to Hidden]

I mentioned to my Rhumy that I never sleep because my legs always

are wanting to move the entire night. He started treating me with

.025 Pramipexole (3 tablets) at bedtime plus 2.5 mg Vicodin.

I was seeing a GP. I never told him that my legs keep me up all

night. The Rhumy asked me if I sleep well so that's how that

came up with him.

I already need to take more Vicodin than what was prescribed..

to do the same thing..settle the legs down a little bit.

[Hidden in reply to Hidden]

If you are using Vicodin i take it you live in the States, as in the UK we cant get that med.

I did understand that from other groups i belong to, Vicodin seemed to bring relief for RLS, but i dont know what the dose is... How long have you been using the pramipexole , it might just be making your RLS worse, rather than helping....

[nightdancer in reply to Hidden]

You have had RLS for 20 yrs you told me. In all this time, has your RLS gotten steadily worse? Vicodin is one of the meds I use for chronic pain, and it is my main RLs med. That is a very low dose of Vicodin. How long have you been taking Mirapex/Pramipexole at that dose? In all this time you have never said anything to any doctor until now? WOW.

[Hidden]

yes, my GP is treating me, i see a neurologist, but cant say hes helped that much, i have more luck with the GP

[Gannet]

Hi, Google Polysomnography. I think the MayoClinic site gives a very good explanation. I feel that everyone who has been diagnosed with RLS should try and have this test done. Either your GP or Consultant should be able to tell you if it's available locally. Unfortunately you won't get a cure but it may, at least give you a better understanding of your personal condition.

[Hidden]

Vicodin puts me in a coma type sleep. It's extreme and reserved

for people who have almost no function left because of sleep

deprivation.

My head was bobbing in the daytime because of my

non sleep problem with RLS. My eyes couldn't stay open long

enough to have a conversation on the day that I told my Rhumy

that I had a strong sensation to keep my legs running, stretching

and it disrupted my sleep.

Yes, I do live in the states. It's so hard to get a doctor to script that

stuff unless it's very short term. The reason that they won't script

it longer is because the body builds up a tolerance and more is

needed to get relief.

I have looked on the mayo clinic late last night to find some good

information. I found some other information that maybe a vitamin

B12 is responsible. My body may not be absorbing it at all. I also

saw magnesium may be needed, iron as well but they strongly

advised me to seek out my doctor's recommendations before

I self medicate.

[nightdancer in reply to Hidden]

ALWAYS talk to the doctor, especially about iron. I could type this in my sleep. have you had your Ferritin level checked? (shows how your body stores iron) It does not mean you are anemic of you have a low score on the blood test; it just means your body is not storing it correctly. I have said it at least a million times over the last 15 yrs. Even iron or a "harmless herbal" can mess you up if you overload, and iron overload can kill you, to put it plainly. so, I advise against going out and buyiing iron, like you said, until you get that blood test. Most doctors will not do a Ferritin test unless they really know about RLS. It is different than an iron serum test. Ferritin score is normal for people without RLS from 12-15. people with RLS, they would like the score to be at least 50. This does not mean that iron helps everyone-far from it, bt it is one of theb only actual medical tests that can and should be done. I had iron infusions done, when my Ferritin showed up as 8. I got my score way up, but it did not help my RLS at all. Infusions are done VERY carefully at the slowest drip and they actually check you into the hospital for 4 or 5 hrs and check your vitals every 20 mins. We always say, no matter what, we give suggestions. It is up to the person to be responsible and check with their doctor, and don;t run out and buy every supplement that someone talks about trying. that is just a big huge general disclaimer. :o) NEVER sel medicate, and no one here is suggestng that at all. :o) Just getting it clear here.

[BobM]

HI and welcome, there are two people who post on this site who can be trusted, one you have met is Elisse , the other is nightdancer who as it happens lives in the States and is a massive wealth of information on RLS. I would suggest you message Nightdancer she will respond however give her time as she is both busy and suffers from RLS so can have bad days and nights.

niah177 is also OK before she gives me a hard time on another site, (you know what I mean and why I mentioned Elisse and Nightdancer don’t you niah177?)

To all you other good folk and suffers, I don’t disparage you all, just only know some of you.

Kindest

Bob M

[Hidden in reply to BobM]

Well thank you Bob, i am sure niah will have something to say when she sees your comment...naughty boy...

[BobM in reply to Hidden]

Gulp!!

[Hidden in reply to BobM]

grrrrr

[BobM in reply to Hidden]

Bob M is in hiding

[Hidden in reply to BobM]

good wait untill i catch you mr !!!

[Hidden in reply to Hidden]

you tell him petal !!

[Hidden in reply to Hidden]

I did niah, i did tell him... see you have caught up with Bob;s comment...

[Hidden in reply to Hidden]

thank you for your support petal :*

[Hidden in reply to BobM]

Thanks for the helpful tips. I bet that means a lot to those 3 ladies.=)

[Hidden]

Always best to see your doctor when wanting to add vits. i know alot of people use magnesium and they say it can help, i didnt for me and it can open your bowels if you are not careful with the dose. Iron, you need to ask your doctor for a ferritin level, before taking any iron pills. Ferritin is how your iron is stored, for RLSers it should be 75 or above, below that level you MIGHT benefit from iron pills, i say might because it doesnt work for everyone. Some do find the iron makes a difference, but not many.

I asked you how long you have been taking the pramipexole, i asked because you could be getting augmentation, that is when the pramipexole can "turn" against the RLS making the symptoms come earlier in the day and worse at night.

I cant say much about the vicodin as i said its not used here in the UK.

Only nightdancer would be able to advise better on that as she is from the US and knows more about that med then i do.

[Hidden in reply to Hidden]

pramipexole for 3 months.

will bring up vitamin supplements to my doctor.

I am anemic by 2 pts. Level is 9.1 don't know what that means to my doctor

but I will ask. I had 14 pints of blood transfer during my knee

replacement operation. Yes, I bled out. Bummer.

I was told to take iron but it upsets my tummy so much.

I have 2 different doctors who treat me. My primary care doctor

who sees to my everyday health and then my Rhumy who treats

me for RA.

My legs are nervous at least 4 hours in 24 hours. I am always

moving them around in the day time. Sometimes I feel like

Thumper the Rabbit in Bambi. =)

[gertlushbird]

Hi and welcome to the community!

I see a neurologist for my RLS as my GP surgery is useless. The Neuro I was first assigned to was very very helpful but he has since retired. His replacement has me dumbfounded so far. I waited 9 months for my repeat appointment only to discover she was on holiday on the day of the appointment and I was seen by one of the psychiatric team (Not much help there as I had to explain what the condition was before the appointment could move on!!) I have another appointment with the Neuro in January so I am hoping I actually get to see HER this time!!

[Hidden in reply to gertlushbird]

Thank you. =)

[nightdancer]

if you have not had a sleep study, you should do so. You are in the states, so it is easy to do, Yikes. Can we call you something else? :o) I like to type YIKES! a lot. LOL

[Hidden in reply to nightdancer]

My name is Karen. =)