Self medicating

It's a bit of a worry that so many are on drugs of one kind and another, some prescribed some not and a lot of suggestions of what drugs to take, a bit scary for those that don't know what drugs are capable of doing. Recommending them over this forum I don't believe is a good,thing. You can buy drugs on line these days and who knows if these are the real deal and what you are actually buying. Some are suggesting not going to doctors because,they haven't a clue and some are talking with such authority on the drugs to take. Without medical knowledge and without knowing who they are talking to. Again scary suggestions.

[Bkc1777]

Hi there,

Thanks for your input. But that was never my experience on here! People share their experience and knowledge but never suggests not to go to doctors.

For example when I asked about what medication are out there nobody said go for this! They refer me to rls org site. Or telling me what would be good in their experience and the side effects.

I have learned so much in a very short time and I am so thankful to everyone here for that.

In the end of the day we go to doctors and speak with a knowledge. (Many doctors I have seeen didn't know much about rls or they just prescribe DA products)

You know what is best for you and everyone here do say they are not doctors!

Hope you find what is suitable for you.

B.

[Madlegs1]

You are , of course, quite correct in your comments.

We are not medically qualified- and don't pretend to be so. However, we are , in many cases, highly experienced in dealing with rls- either in our own experience or in dealing with others.

Some of us have extensively researched the subject and at this point probably know more about rls than the average family doctor. And that is in no way a criticism of that hardworking and overworked profession.

The very existence of this site and the reported experiences of posters with medical personel that , to say the least, is highly unsatisfactory, is proof positive of the need for better education of those individuals and that includes many consultants.

At all times, it is up to people to educate themselves about their own situations- and even more so in regard to their health.

Recommendations made on this site reflect peoples own experiences and do not necessarily apply to all others. Viz- iron , soap , relaxing pads ,copper bracelets, exercise and so on.

Normally , I wouldn't take any notice of a "hidden" post- but in this case a statement needed to be made.

There is much more I could say but this is enough.

Cheers.

[Hidden in reply to Madlegs1]

I THINK the fact that the poster is Hidden, they have left the forum. Probably straight after Bkc left their comment. I could be wrong, but Hidden usually means the poster has gone.

[Madlegs1 in reply to Hidden]

I didn't think one could post without being logged in or following the forum?

[Hidden in reply to Madlegs1]

I've had a few trolls whose name went to hidden after they realised their mistake and decided to leave instead of apologise. I don't think they post again when left it must default to that when the person pulls the pin.

[Pippins2 in reply to Madlegs1]

You can join, write a post or comment and then leave then it just says hidden. X

[nightdancer]

We constantly are saying "Check with your doctor". Treating RLS is difficult, and to be honest, SOME doctors have no idea. After 22 years of managing groups and being a member here, I know how how hard it is to find a good one that knows about RLS. They just have never been trained it before. Don't know why I am typing this, it looks like you have left the group. But, we have to rely on each other, and this is the group connected with the RLS-UK Foundation. No one ever says "Go buy your drugs on the internet". We don't even like when someone says "take iron". I cannot say how many times lots of us have said. "Do not just go out and buy iron until you get your ferritin level checked." Everything is a suggestion, the disclaimer is clear, and we have learned over the years that sometimes some people never get ANY help until they join a group and start asking questions.

[Madlegs1]

Wierd- so they don't get to see the replies?

BTW - Kaarina replied to me- but it hasn't appeared as a post! Has she been nobbled ?

This is better than Smileys' people.

Can't sleep for the suspense and intrigue. 😲

[Kaarina Administrator in reply to Madlegs1]

LOL Madlegs, I deleted my reply to you as Elisse had already given an explanation.

[Madlegs1 in reply to Kaarina]

I still got the email notification!!!😊

[Hidden in reply to Madlegs1]

I get that a reply notification email and when I go the thread has been pulled, was very confusing in the beginning.

[NoMoRLS]

Not sure if you're in here for info, a Dr possibly....but this site is for those kf who have or still are suffering terribly from this agonizing affliction. Seeing, reading, sharing, asking questions is simple communication and trying to find things for relief. Not complicated. A wise patient is an informed patient.

[Pramipexoleaddict]

It's always good to have a reminder now and again! But, we most certainly do not wish to put people off giving valuable information and making madication suggestions. Or is that medication?

I, for one, am going straight back to my doctor just to check if it's ok to smother myself in Belgium chocolate (other varieties are available on the internet)! My wife has also suggested adding hundreds and thousands! I've said NOT until I've got the all clear from my doctor!

Keep up the good work everyone...

[marsha2306 in reply to Pramipexoleaddict]

Good one!

[Hidden in reply to Pramipexoleaddict]

Of course that's it, I never thought of the hundreds and thousands I'm off to the shop, bye.

[involuntarydancer in reply to Hidden]

surely, surely you mean to check with your doctor first?

[Hidden in reply to involuntarydancer]

Not a chance, he'll likely tell me they are bad for me blood pressure!

[datsoon1 in reply to involuntarydancer]

the doctors have no idea what we go through,so why tell them if you find something that helps,if its on line or other ways

[Eryl]

I agree, so many people these days are conditioned into thinking that medicating is the solution, whereas it's often merely camouflaging the problem. Many medical and mental problems are actually caused by environmental factors. We all know that smoking causes cancer. Similarly, that some people are allergic to peanuts, gluten, shellfish etc. RLS is often caused by food. I've found that my main trigger is potassium sorbate (E202) food preservative. Also I've recentlh found that caffeine can be a mild trigger.

[Oneinfiniteloop]

Might be beating a dead horse here, but here is my 2 coppers:

Prior to this site - I thought I would go mad. All my life, my leggs had a mind of their own. I complained of the symptoms to my gp and she said it sounds like it might be Restless Legg. I thought to myself, holy crap, it has a name!! She prescribed Ropenerol. Did nothing for me. My symptoms persisted and I started researching this restless legg thing. Landed here. Lurked for a while, took notes.

Now with this site - I am on a mostly successful treatment of medication and exercise for RLS. I have even found a new antacid works a treat. I have been through a grocery list of meds trying to find the magic pill / combination of pills that works for my particular body chemistry. All of the ideas came from this site and I ran them by my Doc to see what she had to say. This group has been amazing for me. I joined the RLS.org membership bit and was pleased with the materials. It just keeps getting better.

Never have I felt like someone told me or implied to try something on my own. I remember a big iron discussion and it was said over and over to not take iron with first telling your Doc first.

I am greatful for this group. It has made my life better. I do not know where else on the internet you can say that except perhaps eharmony or farmersonly-dot-com.

[Vonny08 in reply to Oneinfiniteloop]

My sentiments exactly. This site has been a godsend to me

[Jaywell]

I would never buy drugs online or take drugs not prescribed by a doctor. Too scary as you say.

[datsoon1 in reply to Jaywell]

if you find a drug that works online why do you have to tell your doctor,just keep taking the drugs,,,of course not street drugs

[Jeanniebeannie]

Hi i would say that the many that are on here are prescribed medication and are advised as to how it affects them and would say can not do without medication including myself im sure we are aware and sensible. At least some .

[Pippins2]

There's always one! Find the smile ☺ x

[datsoon1]

when the rls is so bad you have not slept for nights and you are in so much pain you will try any drugs to try to stop it, tried or not .you do not care what is in them,if it helps then why not???

[NoMoRLS in reply to datsoon1]

Indeed!

[Graham3196 in reply to datsoon1]

The why not is that you might not read or comprehend the 10000 lines of fine print on the information leaflet and be taking something that clashes with other medicine that you are taking or your heart/kidney/liver/etc condition that we hope and expect our GP to be aware of. What if you are pregnant and the medicine is known to cauise birth defects? Or suicide?

The trick is, OF COURSE, that you have to find a good GP and they seem to be rare in some areas of some countries. We need to be more assertive with our GP and at least ask before the consultation if they know about treatments for RLS?

Its a rotten position to be in.

Incidently where do people find prescription drugs without visiting their GP? Or am I just old fashioned.

[datsoon1 in reply to Graham3196]

of course if you were pregnant dont take a drug that would be daft,but at 60 that is not likely,but you get so bad with rls you will try anything and blast the side effects, as for doctors,hardley any of them know what rls is so they have no idea how to treat it

[datsoon1 in reply to Graham3196]

just oldfashioned,or live in the wrong town

[Vonny08 in reply to Graham3196]

I think it's been shown on many occasions that GPs don't know all the side effects of all the drugs they prescribe. It would be nigh impossible for them to have that amount of knowledge but they still prescribe them without that knowledge. The main thing is people have to be sensible when opting to buy medication online and what's ok for one person won't be ok for another. Common Sense is the major factor here I would say