I HATE THESE LEGS!: MOST IRRITATING... - Restless Legs Syn...

Restless Legs Syndrome

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I HATE THESE LEGS!

36 Replies

MOST IRRITATING SYNDROME I HAVE EVER HAD...ACCORDING TO MY DOCTOR, IT'S BECAUSE I HAVE TYPE 2 DIABETES, AND ITS CAUSED BY NERVE DAMAGE..I TAKE PRAMOPEXSOL, BUT ITS STOPPED WORKING, SO MY DOC HAS UPPED THE DOSAGE TO 0.18 MG X 2 AT NIGHT....SO FAR ALL IT'S DONE IS MAKE ME FEEL SICK

36 Replies
jumpylegs profile image
jumpylegs

My understanding is that rls is a neurological movement disorder that is affected by the amount of iron we have, certain genes are involved, and we are all different and the symptoms are exacerbated by all manner of different issues..... etc. etc.

If upping your medication makes you feel ill try splitting the dose and taking it an hour apart. Also taking the medication with a little food usually helps.

popmaster profile image
popmaster

Hi Yes I totally agree with "jumpylegs" Also as I'm sure you are aware that if your,

Present Med's are not agreing with you their are alot of other RLS Type Meds you,

can try!!!. I would also try Magnesium spray this can help give you some relief!!!.

The Iron thing!!!, it is some times the cause BUT their have been many forum,

member's who have had their IRON "Ferrite" Levels incressed by a large amount,

+ It made NO Differance to their "RLS", BUT If your Iron levels are LOW, Then it's,

Worth ago to get them higher.

olgamarie profile image
olgamarie in reply to popmaster

Popmaster, I have never heard of magnesium spray. What is it and where do you find it. I have heard that magnesium helps with RLS. I have it 24/7 I just got off of the Neupro patch because it made me very anxious and irritable. I take Requib 2 mg four times a day and I awake early morning and often at nights with my lets and sometime arms being horribly "restless". RLS has affected my whole life. I would like to find anything that would work in a lower dose of medicine or do something natural. It is interesting that RLS is a lack of dopamine and I have a son who was just diagnosed with schizoprenia, which also is caused/affected by dopamine. I appreciate all the advice and comments made by interested people. You can learn so much here amd share your stories. Thank you Popmaster.

eileen49 profile image
eileen49

sorry to hear you have this awful illness like the rest of us, it is supposedly connected to the chemical Dopamine in the brain and nothing to do with Diabetes. I am on Neupro patches and Ropinorole tablets so tell your doctor you want a change of meds and good luck jumpylegs .

jigglylegs profile image
jigglylegs

Hi - sorry to hear you are suffering. I take pramipexole and found that I need 3 tabs taken about 8 ish give or take 20 mins has helped. I do feel sick sometimes but have put that down to being extremely tired and an indication that I should go to bed. Hope you find something that works for you.

nightdancer profile image
nightdancer in reply to jigglylegs

One of the most common side effects is nausea with the dopamine meds. That is why they developed the patch Neupro.

THANKS TO EVERYONE FOR THEIR HELP AND ADVICE...FOR THOSE ON PRAMIPEXOLE, CAN YOU TELL ME WHAT DOSAGE YOU TAKE?

Many thanks

Maggie

Restless Legs Syndrome and Quality of Sleep in Type 2 Diabetes

Lívia A. Lopes, MD,

Camila de M.M. Lins, MD,

Vanessa G. Adeodato, MD,

Diana P. Quental, MD,

Pedro F.C. de Bruin, PHD,

Renan M. Montenegro, Jr, PHD and

Veralice M.S. de Bruin, PHD

+ Author Affiliations

Department of Medicine, Federal University of Ceará, Ceará, Brazil

Address correspondence and reprint requests to Veralice M.S. de Bruin, PhD, Department of Medicine, Universidade Federal do Ceará, Rua Prof. Costa Mendes, 1608-4°, Andar CEP, 60430 040, Fortaleza, Ceará, Brazil. E-mail: veralice@superig.com.br

Next Section

Abstract

OBJECTIVE—To investigate the presence of restless legs syndrome (RLS) and the quality of sleep in a population of type 2 diabetic patients.

RESEARCH DESIGN AND METHODS—The study population was composed of 100 consecutive patients regularly attending a diabetes clinic at the University Hospital of the Federal University of Ceará. The subjects’ quality of sleep was assessed by the Pittsburgh Sleep Quality Index, and excessive daytime sleepiness (EDS) was measured by the Epworth Sleepiness Scale. The RLS was diagnosed using the four minimum criteria defined by the International Restless Legs Syndrome Study Group. Other relevant clinical and laboratory parameters were obtained by interview and chart review.

RESULTS—RLS was found in 27% of patients. Poor sleep quality was present in 45% of cases and was associated with age (P = 0.04), peripheral neuropathy (P = 0.001), and RLS (P = 0.000). EDS was found in 26% of patients. Logistic regression analysis revealed an association between RLS and peripheral neuropathy (odds ratio 12.85 [95% CI 2.83–58.40], P = 0.001).

CONCLUSIONS—RLS is common in type 2 diabetic patients and can be a major cause of sleep disruption in these patients.

in reply to

You are completely right about type 2 Diabetes and neuropathy...my 3 toes on my left foot are completely numb, This is all to do with my diabetes and nerve damage, according to my GP

in reply to

my 3 toes and half foot and part of my calf muscle are numb or feel numb on my right and i don't have Diabetes think may be due to having trapped my Sciatica few years ago

sal

in reply to

Thanks Sal for your input...its interesting to hear the numbness can be due to many things, not just diabetes

johnw2611 profile image
johnw2611

Pramipexole is prescribed primarily for Parkinson's Disease (no connection with RLS), but is also very effective in long term control of Restless Legs Syndrome, for which a much lower dose is needed. If you are taking this for the first time, it must be at an even lower dose to start with, and must be supervised by your GP. There are two main strengths available: 0.18 mg. for general long term use, and 0.088mg for the introductory period.

At the beginning of your treatment you will start by taking one 0.088mg tablet once daily, 2 or 3 hours before bedtime. This dose will be increased every 4 - 5 days by taking additional 0.088mg tablets until the dose is sufficient to relieve symptoms. Most people seem to settle at the 0.18mg level (the higher strength tablet). Much depends on your symptoms and when you are affected. eg.If you get RLS during the day you might need to take another tablet earlier in the day, or up to 3 per day (0.54 mg total). Higher doses can be taken but only if really necessary. Do not take more than the minimum dose that works, as it could cause side effects.

Tablet strength can be shown in two different ways, which can be confusing. thus "0.18mg (0.25mg)" but it is the lower figure which is used in prescribing.

If you can access to Google, look up MIRAPEXIN (a brand name of Pramipexole) - you will find a lot more info.

in reply to johnw2611

Thank you all so much for your advice...it's much appreciated...un fortunately my GP was not familier with the meds for RLS...she started me off on 0.088, i was kept on this for months untill the dosage no longer worked. I am now on 2 tablets of 0.18mg 4 hours before bedtime..the problem is i'm falling asleep on the sofa before i get a chance to get into bed...i dont know if this is a high dosage, what exactly is the dosage 2 x 0.18mg ? Also i do get RLS during the day but im not keen to take more tablets. I feel like im on a merry go round and cant get off.

nightdancer profile image
nightdancer in reply to

That is really low, so you are lucky to be able to use that low of a dose in case you have to go up. :o) .125 is the usual starting dose for most with RLS.

johnw2611 profile image
johnw2611 in reply to nightdancer

To nightdancer How do you get 0.125 mgs Pramipexole as tabs are either 0.088 or 0.18mg?

in reply to johnw2611

Hi Johnw2611, i also say .125mg when i was taking the pramipexole, .125mg is the same as 0.088. I think is how the dose is said in the USA. Looking on the website rlshelp.org where i get alot of my info on the meds even tho i live in the UK it is probably why i say it that way...

johnw2611 profile image
johnw2611 in reply to

Hi Elisse. Yes, of course, you are absolutely right! (Why didn't I think of that?). Thanks. (Another example of two nations separated by a common language...)

nightdancer profile image
nightdancer in reply to

Thank you, that explains it. LOL

nightdancer profile image
nightdancer in reply to johnw2611

I am in the US. It comes in different doses over here. I ahd never even heard of .88 dose until now. I had no idea they were dosed differently in different countries. That could be very confusing. :o)

nightdancer profile image
nightdancer in reply to johnw2611

Technically, RLS has nothing to do with Pakinson's, but Parkinson's patients are 13 times more likely to develop RLS. Not the other way around, though just so we are clear on that. :o)

johnw2611 profile image
johnw2611

Hi Maggie, The dose being prescribed might be better split up - you can break the tablets in half - try taking half a tablet say 2 hours before your likely daytime RLS onset and the remaining one and a half tablets in the evening, perhaps a bit nearer to bedtime so that you will be in bed already when the effects are felt. Two tablets together make a rather strong single dose - getting the dose right for you is a trial and error process, but once you have got it right I'm sure you'll be fine! Johnw2611

in reply to johnw2611

Thank you John...I shall try this tonight

johnw2611 profile image
johnw2611

Hi Maggie. One other thing that would help both RLS and Diabetes is a high dose MAGNESIUM supplement. (See paperback book "The Magnesium Miracle" by Carolyn Dean, MD, ND. published by Ballantyne Books New York. Available on Amazon for under £10.)

I recommend JIGSAW brand 'Magnesium W/SRT' (Sustained Release) tablets.Available from 'Vitamin World Discount' in the USA. Look on Google for details as I have mislaid the Invoice. I take them myself and find them very effective once I reached a high enough dose. (2 three times a day in my case), These allow me to manage on a lower dose of Pramipexole. Johnw2611

nightdancer profile image
nightdancer in reply to johnw2611

NOW you have my attention. While magnesium is and may be helpful for people with RLS, be careful where you get your information. I am saying this to everyone. I am well acquainted with "DR" Carolyn Dean, and her miracle magnesium cure for everything including cancer. I could site all the court documents, her suspensions, being stripped of her license in Canada, so she went to California. I have court papres from there. She gave unnecessary 200 dollar blood tests, and without even looking at results diganosed patients from that. The investigators pulled 40 random files and all but one were diagnosed with yeast infections, plus she was diagnosing people over the phone, never having seen them. But, being people with RLS, this is what we should pay attention to. an article she wrote "Restless Legs Syndrome-Forget the Hype". She is one of those doctors that says, and I quote," If you would get your lazy asses out of your recliners and move around, you would not have restless legs" arrrrggghhh! Give me a break.. She believes no such thing exists as RLS, and that we are all overweight and lazy. We had an email campaign thru my RLS groups, and she got so many of them, she finally took all mention of RLS off her web site. The article can still be found elsewhere, unfortunately, but we got her to take down that ignorant article in about a week's time. And, I have all the emails back and forth between her and me. Anyone that does phone consultations for 200 bucks, and then tells you to take magnesium and all will be well, is not anyone I want to read or talk to. I know this is coming off strong, but you can find this info in many places, and I am not saying anything she did not print, or say, or that is documented in 2 different courts- one in the US and one in Canada. It is all a matter of public record. Her resume that she has on her web site has a LOT of holes in it. She is now in Hawaii doing whatever, and still promising a dream that won;t come true. She claims that magnesium can cure everything from cancer to diabetes.

so, while I am not opposed to magnesium in any way, and I take it myself, I just think you need to know who your are referencing to new people here that need help. There is no magic pill or supplement for RLS, and she does not claim this any more, because she says RLS does not exist. Do what you want with that info, but it is all the God's honest truth.

I don't think you are trying to sell anything here, you are just giving information out as far as I can tell and we all get our info in different places. Her web site or book is not one of those places, in my opinion and hundreds if not thousands of others. I am not trying to be nasty, but people need to know these things before they spend their hard earned money on things that most likely will not help them.

in reply to nightdancer

Was this the woman who actually had a question mark on whether she finished her medical exams and was allowed to call herself a doctor...??

nightdancer profile image
nightdancer in reply to

No, she finished her schooling at the uni in Canada. BUT, they are the ones that started investigating her in the first place. She could not practice in Canada, so she went to California in the US. a couple of years after that her Canada problems showed up in CA, and she was ordered to take more educational classes to ramp up her skills, plus she was suspended from practicing in CA altogether. So, it is really iffy if she is even allowed to call herslef a doctor or an MD. Have been perusing all the web sites that still have her "if you think you have RLS you are lazy" article, and commenting on all of them, making sure that they know that she removed all referneces to RLS off her own web site. The US RLS Foundation went after her, too, as far as their members helping us with our email campaign. She is scum, in plain English, in my opinion. Would never buy anything of hers, since she is a quack. The court proved it.

in reply to nightdancer

Thanks for the reply, i knew it was something to do with whether she was allowed to use her title of DR...

johnw2611 profile image
johnw2611 in reply to nightdancer

Well, nightdancer, that was an unexpected but interesting discourse! I have only read the book (which I found to be very informative and well reviewed). I am astonished at the ongoing malpractice and court cases that you describe, but these things tend to happen in America. I live in UK so don't hear about such things so readily. I mentioned the book as an afterthought, the emphasis being on the Jigsaw brand Sustained Release Magnesium tablets, which I take and find very helpful. I would certainly recommend trying them though I accept that they might not suit everybody.

The primary subject of the discussion was RLS and the effectiveness and dosage of Pramipexole - we seem to have strayed away slightly from that topic!

nightdancer profile image
nightdancer in reply to johnw2611

Well, like you said, you had not heard this, but you can find out. I juts think if one is recommending something they should know exactly what they are talking about, I do not think we are off topic here, since the book is written by a doctor who does not believe that rLS even exists, and this iIS an rLS web group. so, I hardly think we can take advice from a person who has lost their license in 2 countires. Like I said, I have nothing against manesium, but it just drives me nuts when someone like her says they can cure everything with magnesium, which is exactly what she is saying as you go around the internet. I just thought you should have accurate information for something that you are recommending. Just hearing her name sends me off, so when I saw you ahd mentioned her book, I had to speak up. This si what I do, plus manage support groups online, and no one is going to put anything over on me or my groups just because they have an MD after their name. Did you get that I said she does not believe RLS exists at all and we are just lazy and need to move around? So, as far as I am concerned, if she does not believe in RLS, then she should not even have to be dicusssed in an RLS group unless the info needs to get out there, and obviously it did. I am a support group manager plus a helath activist against people like her that are profiting big time off of desperate people. Surely you cannot think that magnesium cures everything from cancer to diabetes. that is what she claims, and she will diganose you over the phone for a quicvk 200 bucks.

I will say this one thing, and that is all I will say unless someone needs more info. The diciplinary board for Canada said her behavior and practice

was "disgraceful, dishonorable, and unprofessional." Just please all of you, do not buy her book. You can see enough online to tell you what it is all about. and, I said, I take magnesium myself, so it is nothing against you or magnesium. It has it's place. But, I never sit back and say nothing when I see a situation like this that needs to be addressed. This is why I always tell my groups to make sure you are ona reputable web site, and if you are not sure ,do your homework. anyone who says RLs does not exist has no room in my life or my brain, and on top \of that she says we are "restless but inactive" That was edited from "get your lazy asses out of your recliners". that's all. I will not deal with anyone insulting me or my fellow RLSer's. That is all. Hope you have a good night.

in reply to nightdancer

Thanks for the info on magnesium supplement...i have ordered some online, im willing to try anything..the pramipexol has such bad side effects for me...after i take the first tablet, i dont remember anything,,i just pass out and wake up stuck to my laptop or sitting up straight on the sofa wit no memory of falling asleep..i take the first tablet at 8 pm, i think its too early to go to bed at that time, this is the 4th night i have not made it to my bed, its really getting me down..its a bad side effect of pramipaxole, does anyone else have this effect after taking it? Im really hoping magnesium will work so i can maybe come of the pramipexole

in reply to johnw2611

I have ordered this brand online john...hope it works for me

johnw2611 profile image
johnw2611 in reply to

Yes, it will take several days to build up to an effective level but it should certainly help eventually. It has a very calming effect overall. I'm sorry that you are having such problems with Pramipexole. It is the best treatment of all for most people so please don't give up on it yet.... The dose probably needs more tailoring to your particular needs. eg. It is more effective in preventing than stopping an onset of RLS, so perhaps half a tablet taken earlier would be enough to prevent RLS onset without causing so much sleepiness. Increase the dose by the smallest amount possible to reach the lowest dose that works, whilst minimising the side effects. Many of these unwanted side effects diminish or disappear before long as you continue with the tablets. Another factor might be interaction with any medication you are taking alongside for another condition. Now - dare I mention it - there is a very helpful book "Restless Legs Syndrome - Coping with your sleepless nights" (American Academy of Neurology 2007)/ Demosmedpub.com) $21.95 or less from Amazon, which is full of useful relevant information. No mention anywhere of a certain "Dr.D" so even nightdancer should approve this one!!

Thank you so much John, I shall try the Magnesium as you suggested

nightdancer profile image
nightdancer in reply to

magnesium may help you, but always ask your doctor first before starting anything.

johnw2611 profile image
johnw2611

Hi maggie. Just a brief correction re. the Magnesium Tablets. I have just ordered more today for myself and found that the 'Vitamin World Discount' web site is not active so I ordered direct with 'Jigsawhealth.com'. The web site will give you all the info but to place an order from UK you will need to email customer service: help@jigsawhealth.com for instructions or phone them on 001 866 601 5800. There is no UK supplier.Two bottles cost $109.02, 3 cost $125.47 but they will last a long time (280 tablets per bottle) ! John.

in reply to johnw2611

Hi John, thanks very much for the info, much appreciated..maggie

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