RLS PROBLEMS!!

[Amy96]

Iam absolutly devistated and angry i just had an appoitment at my GP told him the gabbapentin werent working and i told him about this group with lots of useful information and he looked at me and asked me why i had all theses problems and i dont look like my legs where bothering me also he said theres no way they will give me anything to help me sleep at night because its addictive and im only 20 so i should be fit and healthy not having all theses problems with RLS! Well i cant help it & i told him well im not a doctor and yous clearly all dont have a clue about RLS and he told me yes your right we dont know anything about it... doctor? Jobsworth downgrading idiots if you ask me!! So angry & upset left to sufer with this twice now.

[Kaarina Administrator]

Amy96,

You can make a complaint if you are unhappy with your GP or GP surgery:

which.co.uk/consumer-rights...

You can change to another GP surgery too without having to give a reason why.

You need to find a GP that will listen to you and if the GP does not know much about RLS is willing to look at the rls-uk.org website or look at information that you have copied and taken in with you to your appointment.

You are in an unenviable situation and I am sorry to hear this.

[Amy96 in reply to Kaarina]

I have made a complaint to the surgery through there website and have told them i would like to be contacted regarding this issue, i havent heard anything if i have not heard anything withing 3 days, then i will be contacting the health board NHS of scotland, but i will be phoning up and contacting them tomorrow and telling them i want a second opinion as iam in my rights of a second opinion of someone who will listen to me! Iam taking this the full way because iam only 20 and i cant be suffering like this and more or less being told theres nothing wrong with me and theres nothing they can do just because they dont know or understand Rls, very fustrating! I will be changing GPs also!

[lauraflora in reply to Amy96]

Several of us have had RLS since a child, so being 20 doesn't let one off the hook. It is certainly devastating to have something when young.

However, it would help to know what approach you might like to look into/explore/try out - medical, non-medical or maybe even a combination of the two. ( Before I stick my neck out and explain what my non-medical approach is, and my experiences with it.. Other people on here have used some of the same things.) There are different things that help different people, or that they can tolerate or not, so some trial and error is to be expected.

I know very little about the various drugs that other people use - some successfully and others not. So someone else will have to fill you in on those.

There is also a lot of information out there we can point you in the direction of, which is very helpful so you can understand what is going on in your body with RLS.

[Amy96 in reply to lauraflora]

That would be very helpful thankyou! Im suffering so bad with this it is driving me crazy no doctor will take me serious!

[lauraflora in reply to Amy96]

What I have found to be most helpful is to take Magnesium, in the form of magnesium citrate, or a mixture of Magnesium citrate, taurinate, succinate and a few others all in one formula. I suggest NOT taking magnesium oxide as it is not well absorbed as a mineral and can cause rather drastic diarrhea. I myself take about 400 to 600 mg, spread thru the day, with most of it at night. It helps to calm the nerves and muscles. When I did not take it, as I had run out - my RLS was TERRIBLE and kept me up most of the night in 1 leg and both arms (usually it is only in one leg.) When I take magnesium (which I never miss taking now,) then my RLS is only a flutter here and there and quite manageable. (I list some product brands below.)

Also Iron Bisglycinate - an easily absorbed, non-constipating form of iron. 25 mg At NIGHT or it is gone from your system when you need it most. This is because RLS people have a genetic problem with iron crossing the blood/brain barrier and iron is needed for the various chemical signals - Gaba, dopamine, etc to prevent RLS. You can look up a much better explanation on the Johns Hopkins University website and other places. Probably on this site as well, as we have had many discussions about this. (People advise getting tested for your iron levels. But probably, at your age, you need iron being a menstruating female.) Do look this up.

Also I take B complex 50 mg several times a day. Folic acid about 800 mg - the best kind is a sublingual (melts under the tongue) tablet that gets into the blood stream quickly.

I THINK that this combination is helpful together. Just one of these things isn't necessarily enough, but that depends upon the person. Some have (and I also use it in addition to the tablets) found magnesium oil or cream to be helpful rubbed on the offending area. The oil can sometimes be prickly, till one's skin gets used to it.

Most of these things can be purchased on Amazon UK. I use Solgar's Gentle Iron, Solaray's B Complex, Country Life Folic Acid, Source Natural's Ultra-Mag. (I am in the US.) Probably a Health food shop, tho we all know Amazon is cheaper. * If you are on a really tight budget, I would suggest the magnesium and the iron.*

Some people still need a drug besides some nutritional supplements (tho not myself). But it seems to me that helping the body nutritionally can make any drug dosages smaller and fewer.

One does need to do some experimenting. And sometimes a bit of time is needed to let something work. But I hope this info is helpful to you and that you look up more specific info about what I have listed here.

Incidentally, there is Primary RLS, which is most likely genetic and has no discernable cause, and Secondary RLS, which is from things like spinal injuries, surgeries, etc. And it seems to be tied in with one's Circadian Rhythm, which is why it acts up at night for the most part. You will see that when you read about RLS.

I myself have had it from about 7 or 8 years old - on and off, better or worse over the years. I am now about to turn 66. Mine is genetic as I have a son who has it also..

Other people can fill you in on drugs, and augmentation (too high of a dose that makes it all worse) and what to do about that. I think several of us on here could tell the doctors a thing or two. And there have been several postings about triggers in your diet, etc.

Good luck and DO look some of this info up, so you are informed and have a better understanding of what is happening with your RLS.

[FLAME43 in reply to lauraflora]

nice post

[Grassy58 in reply to Amy96]

let us know how you went with that. understand your frustration

Grassy

[Hidden]

So sorry your doctor is a idiot, but there are a few about unfortunately. Glad to hear you are taking it further.

[Retren]

It is very upsetting to have ones physician respond in such a way.I personally have had restless leg since I was ten years old and am now eighty and unfortunately still endure it.I have found certain foods exacerbate the condition and there are medications that can be prescribed.It is always a case of trial and error to find relief and what helps one person does not necessarily help another.Alcohol caffeine,additives ,sugars and a number of other things are a problem for RLS sufferers.If you have not tried already .I just read an article which mentions Advil it is useless for me but I am acquainted with someone who has had success.I recently found eliminating gluten was beneficial one just has to keep trying until something helps.I would call around to find a practice with someone competent to treat this condition and is knowledgeable about it.

[Nita7]

Speak up for yourself, change first your doctor, if that does not help, change surgeries. Be brave and ask and write until you get the answers and help you deserve. You are worthy of a healthy life. This website is wonderful and its people will give you information to do what you must to survive the nhs doctors!

With love and understanding

Nita7

[Amy96 in reply to Nita7]

Thankyou so much

[Grassy58]

oh how frustration my doctor said the same but he gave me 10mg Temazepam one tablet at night, because they are addictive I don't tsysake them every night but lately I take them more times than usual because of this issue. Lets face it doctors don't like to be told

Grassy