Is there much point seeing a Dr? - Restless Legs Syn...

Restless Legs Syndrome

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Is there much point seeing a Dr?

Donna13 profile image
22 Replies

Hello, I found this website purely by accident after yet another late night frantic Google search on cures for restless legs!! I first started getting this when I was about 20, I'm now 33! The advice I got from the Dr was to not wear heels and don't drink, and it was an illness older people got so I couldn't have any medication for it! Great! So I've just struggled for the last 10 years although it's now got to the point where it's absolutely driving me insane!!!! It's not just at night either, I'm starting to get pains in my legs in the day. I put it down to standing up all day at work, but nothing is working, is it even a point going to see my Dr about this? I'm basically getting a few hours sleep a night, at the moment it's 1am I have work in 7 hours and have made a sort of sling for 1 leg so it can hang out the bed, and had to bend my other leg to get some kind of relief, and now I'm waffling because I'm so tired and have no one else to talk to about it (obviously my husband is snoring his head off) so yea, any point in seeing the gp? Any advice would be great!! Thanks.

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Donna13 profile image
Donna13
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22 Replies
Pippins2 profile image
Pippins2

Hi yes lots of treatments are available although GPs often dont have a clue! Take a look on RLS-UK website lots of info there.Very often we have to educate ourselves and then teach our doctors.Learn as much as you can knowledge is power.Is there a different doctor you can see? Just checking as you only mention pain do you have the urge to move feelings too? Are you on any meds for anything else as many can make RLS much worse? Take a look through old posts and comments .Just a quick reply as i dropping off to sleep but just wanted you to know somebody is listening when it feels like you are the only one awake . lol ....Pipps x

Pippins2 profile image
Pippins2

Oh what the doc said about drink is true as alcohol will make it worse for most of us.High heels wont have any effect as the problem is in the brain not the legs!x

Linda_pink profile image
Linda_pink in reply to Pippins2

I must be an exception as alcohol settles my legs. But currently trying to lose weight so have given it up also don't want to be drinking every night for all the other health risks.

nathanwilde profile image
nathanwilde in reply to Linda_pink

Mine too, it's actually the next day when your body is withdrawing that aggravates it for me.

so sorry to hear this. I had similar experiences in the past... I have been having rls since I was in my twenties... at that time it was now and then and this gradually progressed in a structual problem. so this remark that it is just something for old people is not true at all!

Things got even worse when I had to start using AD medicine in my early 40. Nowdays I'm using pramipexol which really helps. took me some time to figure out how to use it but now I have it under controll.

I know some gp don't have a clue en some have you just have to find the right one. Also there is not just one cause...some people have this because they use medicine..some of them have this because of an un balance in they nutricians... and your gp is right drinking alcohol and koffie at knight makes things worse. About the high heals I have no clue...I like them haha

I hope you soon find some way that will give you some relief... RLS is hell!

Shaft1952 profile image
Shaft1952

No you don't have to suffer there is treatment out there. Go on the RLS website and print of patient information leaflets. Then take them to DR and ask for help, if you still get same response ask Dr to refer you to a neurologist. Don't suffer anymore. There are so many of us out there and just ask for support. We all have different experiences, my own started as a child and I am now 64yrs. Don't suffer as there is so much more information about RLS now. Hope you get help soon, you could always change Dr's if not willing to listen and help. Good luck.

In a word NO but with a BUT! You will get little support or understanding but they hold access to the drugs that can help:

rlshelp.org

on the left side look at the treatment link - go armed with as much knowledge as you can. If you are in the UK look at NICE guidelines:

nice.org.uk/advice/esnm67/c...

Good luck.

(Stay away from alcohol and be weary of many prescribed drugs as they make the whole thing worse)

SuperMNew profile image
SuperMNew

I identify totally with your desperation, Donna! I, too, was 20 when my journey began with RLS. I had a broken tooth at 20, and the dentist put amalgam (a heavy metal) into the tooth and then a crown lined with aluminum (another heavy metal). If I had known at the age of 20 the dangers of heavy metals and what I have learned since then, I could have saved myself 40+ years of misery! Those metals began slowly leeching into my body. I also had two wisdom teeth extracted at age 20, and the bone cavity where the root was located never healed (I understand this is common when teeth are extracted). That area of my jaw bone began dying. Now imagine! I have heavy metals leeching into my body and dead tissue in my jawbone. Unfortunately I HAD NO SYMPTOMS. There was no redness or swelling or discomfort in my jaw from the wisdom teeth being pulled. Ugh! And it took a while for the metals to begin causing trouble. The trouble manifested as RLS.

It took me 40+ years of searching to find the problem. As I write this, I am several weeks away from dental work that treated my dental issues, including removing all metals from my mouth and debridement of the dead bone. I am also chelating out of my body the heavy metals that will not leave on their own (I am using Metal Magic, a product that breaks the bond heavy metals have on my cells and brings them out of my body (baselinenutritionals.com/pr... And, regardless of the criticism I have received from others that have RL on this blog, my RL is quickly diminishing. I suspect that once my body is clear of the metals, I will no longer have RLS.

I recommend a biological dentist. They are different from regular dentists. Here is a database of these specialists located around the world: iaomt.org/search/

I realize that RLS has many causes, and that dental issues may not be why you or anyone else is suffering, but if I can help ONE PERSON find the cause of their RLS, I will be thrilled!

I would simply put this out there for you and others as one of possibly many remedies available for folks to look into. If you are desperate like I was, you will follow all information people offer as possibly being effective. But please understand that there is definitely a tooth-body connection.

God bless you, Donna!

nightdancer profile image
nightdancer in reply to SuperMNew

You are the ONLY person who has said there is a "tooth body" connection when it comes to RLS. I know you are in the Parkinson's group, too, SuperMNew, so just want to get that out there. We asked you before about people with dentures and kids who have never had fillings, by one of the admins here. I am QUITE sure a biological dentist is VERY expensive, so even if I thought it would help, that would not be an option. But great for you! So it has been a little over 3 weeks for you. have you had ZERO RLS for the entire 3 weeks, even though 3 weeks can hardly be called a cure. Let's call it an unusual treatment for you. ;)

SuperMNew profile image
SuperMNew in reply to nightdancer

Nightdancer, I wish for you the best years of your life wrestling with RLS. Seems like that's what you expect to happen.

Perhaps you should look into science a bit regarding the tooth-body connection. You might learn something new.

nightdancer profile image
nightdancer

It may take a few tries to find a doctor who understands RLS, which is a neurological disease, so that is why some doctors do not "get" it. But, it can be a long process. Despite what some people may say, it is worth finding a good doctor, and scouring the internet for a cure will do no good, because there is no cure, only treatments. I have had Primary RLS since I was 14, genetic, and my whole family has it. But stay away from anything that says "cure" they are only after your money, and it is probably not approved at all. Also despite what you may read on here, lots of people do try anything, but a biological dentist should not be your first stop, a neurologist is where you should start as stick to reputable web sites. IF it sounds too good to be true, it is 99% sure it is too good to be true. I have only heard of one person, who posted here having any 'help" anything to do with metal, and I have been managing RLS groups online for 20 years. There is no one answer, and it is trial and error. But, do not give up, there is help to be had, it is just that the path is not clear for everyone, and not the same for everyone. Listen to Pippin and go to the ww.rlsuk.org web site and start reading up on some good info, and don;t be desperately googling a "cure" for RLS, there is no cure, but there are treatments and it is not easy, but can be managed with the right individual treatments and/or meds. My meds control my RLS 90% of the time and that is the best I can hope for. No one thing works 100% of the time. hang in there!

nightdancer profile image
nightdancer

RLS all has to do with the dopamine receptors in our brains, and can be genetic, or run in families. My entire family has it. So a neurologist is usually the way to go, even though my GP is an angel. Alcohol will block the dopamine receptors, and will make your RLS worse, even if it relaxes you in the beginning, You will pay later.

Donna13 profile image
Donna13

Thanks everyone, I'm trying to get an appointment for tomorrow and see what they say! The only things I take are the pill (for over 16 years now) and an anti histamine that I've been taking every day for the last couple of months, I suffer from blocked sinuses and hayfever this time of year. It's really hard to explain the pains, it's mostly the constant twitching, cramping and having to move every 2 seconds, I've noticed these last few months it's moving into the back of my thighs now, not just lower legs! It's totally starting to effect my life now so I need to do something!!

in reply to Donna13

Hi Donna13, you have been taking a anti-histamine for the last couple of months and you say the RLS has moved to the back of thighs the last few months. So, i dont know if you know but anti-histamines can make RLS worse for most of us.

Pippins2 profile image
Pippins2 in reply to Donna13

Donna as Nightdancer has said antihistamines are well known for making RLS much worse so that is something worth checking out. Two which are considered safe for RLS are Claritin / Clarytin and Allegra x

Shon48 profile image
Shon48 in reply to Donna13

The anti histamine can make the rls worse , it did for me and when I looked it up that was one of the side effects . I use "goodnight magnesium spray " from Holland and Barret or Amazon depending where you live. The bottle with purple writing and spray it on your legs before getting into bed . Helps a lot , not a cure but does work most nights for me . Good luck 😀

Jeanniebeannie profile image
Jeanniebeannie

Hi i have had rls all my childhood and adult life and you need medication because believe me no other way is it going away some days you have nothing and other days no peace its your brain that controls it all and no matter what ppl say doing this n that wont make it stop i should know as put up all my miserable life because of it so do go to your gp and it wont cure it but some med will help.

hairyfairy profile image
hairyfairy

Iv`e never found alcohol to be a problem, & I don`t get rls every night, just every 7-10 days. Iv`e no idea what sets it off.

John_naylor profile image
John_naylor

To help you educate yourself on RLS I recommend getting the book Restless Leg Syndrome by Buchfuhrer/ Wayne/ Hening etc.

Donna13 profile image
Donna13

So not been taking the antihistamines for the last few days, thought I had a bit of improvement but then last night was ridiculous! Tried to see my Dr on my day off but mine are absolutely useless and I couldn't get an appointment! I'm just really grumpy cus I'm tired, might try this magnesium spray someone suggested!

nathanwilde profile image
nathanwilde in reply to Donna13

I tried magnesium spray. It was a waste of money for me unfortunately.

nathanwilde profile image
nathanwilde

I had no real luck with GPs. They do not understand it at all. I actually got the impression they thought it was an illness for mad people only.

Be careful because they have access to drugs such as opiates, benzos etc which their intranet will recommend to them, but these drugs are very addictive and the withdrawals will make your life much worse.

I wrote everything I've learned about curing RLS here:

healthunlocked.com/rlsuk/po....

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