Disco legs

[Sarahlouw]

Hi i am new to the forum but alas not to RLS or disco legs as my partner affectionately refers to it 😊. I have tried all the usual remedies with no joy. I did manage to get hold of some diazepam from a friend only 2mg dose which was amazing in aiding a good nights sleep. I asked the doctor for a prescription but unsurprisingly said no and that there were other dopamine based medicines i could take instead. However i am totally sane and know to take diazepam only when absolutely needed. I would prefer to take my chances with them then the dopamine medicines and their reported side effects. I am a nanny who works up to 16 hours a day 6 days a week. I need sleep and cant afford to be tired or groggy in the day.

Anyway i decided if i cant cure RLS then i need to mask its detrimental effects. I decided last night to use Voltorol on my legs and feet. This has diclofenic in it. Available over the counter and it just bloody worked didnt it !!!!??? I managed to get 4 hours sleep straight off. Then reapplied and went back to sleep !

Just thought i would share as its an affordable way to manage RLS and may work for others too .

[Hidden]

It can be hard to get Drs to listen, their Egos do not take well to other people having the 'secret and sacred' knowledge of the drugs! In saying that, many, many lives have been destroyed by diazepam/valium and it is the Drs job to protect too. According to

There is info on drugs on rlshelp.org and rls-uk.org, you could print it off for your Dr however they will be following NICE guidelines:

cks.nice.org.uk/restless-le...

and wont be going for benzos as first line treatment.

Mind you if the Voltrol works for you keep with it for as long as you can. BTW Sarahlouw you are very welcome and in my opinion found the best place for learning about RLS.

[Sarahlouw in reply to Hidden]

Thanks Raff

I understand the docs are following protocol but they should also take each patient on their merit. I have a stash of diazepam but use only when its absolutely needed. It is a recommended drug for RLS so i wasnt being off the wall in asking for it .

I am fortunate as i dont get disco legs all the time. It comes in bouts of couple weeks at a time then desists for a month or so. I blame mum. She has it too. 😊

[Hidden in reply to Sarahlouw]

I completely understand where you are coming from, I too have the same view - I went through a period of not being treated properly for RLS as I waited on a pain clinic referral.

The annoying point was the same Dr had prescribed pretty potent drugs before. I ended up in a very dark place due to the unbelievable stress and pain of my condition, I shudder to think how bad it was. Once seen by the pain clinic and prescribed useless tablets by an even more useless Dr my own GP was much more willing to prescribe. I look at it as him covering his @ss and getting a second opinion so I forgive him

You are completely right in asking for it HOWEVER, the first thing the Dr will ask themselves is how do you know it works. IF you said I got some off my friend, (which is illegal btw - although understandable and nothing I wouldn't do myself), alarm bells would have rung and they will have been less likely to prescribe them.

It can be very difficult trying to convince Drs we are not all drug fiends

[Madlegs1 in reply to Sarahlouw]

It is sounding like something is triggering your disco episodes . Would you try keeping a diary of food and environments to see if there are any connections?

Good luck.

Ps- Diflac is a lot cheaper than Voltarol- don't have to pay huge advertising costs!😜

[Sarahlouw]

Lol yes. Well i was upfront and told him i used from a friend. Hes not my real doctor who was away at the time. She would have prescribed. I will keep on plugging away until i get what i want. I usually do 😊

Thanks for your feedback. I feel a little embarrased as i know my condition is not as bad as some on here, you included, i dont have pain just legs that seem to want to move when i dont!

But when it affects quality of life and work then it is an issue and should be taken seriously by the doctor.

Thanks again. Justwanted to share the voltoral find in case it helps anyone else.

[Vinagirl]

Have you had your blood iron and ferritin levels checked? Many people with RLS have low levels and taking iron pills has helped many, including myself.

Here is very good medical article about restless legs. uptodate.com/contents/treat...

[Sarahlouw in reply to Vinagirl]

Thanks vinagirl i had my blood checked not long ago. All was fine. I will read the link for sure though. 😊

[Sarahlouw in reply to Sarahlouw]

Very interesting reading . Thankyou vinagirl.