i hate rls

[jippylegs]

hi my name is david & i live in scotland,i have suffered from rls for about five years,this is the first forum i have joined & i have already found out more information in a few days that i did not know.i am reading about augmentation at the moment & it explains a lot,i to take ropinirole.

[Hoffie]

Augmentation really stinks and it appears to happen to a large percentage of people who take all the usual drugs used to treat RLS. Wean off slowly and get on another medication

[Kaarina Administrator]

Hi jippylegs,

This link may be helpful to you on augmentation if you have not already seen it. sleepreviewmag.com/2015/02/...

[Joolsg]

Hi David and welcome. Follow Kaarina ‘s link and let us know how you get on.

[Kaarina Administrator]

Hi jippylegs,

We would be most grateful if you feel able to complete the following survey: healthunlocked.com/rlsuk/po...

[Windwalker]

The only way I have maintained any semblance of normal, is with a dose of ropinirole that everyone tells me is far from normal. I was suicidal from sleep deprivation when I found a neurologist from Northwestern University who wasn't afraid to be,,what most called abnormal. He battles the insurance companies and the state because they say he over prescribes, for extreme patients. If he can mix enough different medicines and cause you to sleep even 4 hours in a stretch and wait a short time and repeat the dosage. I Keep a diary of what I took so I won't over medicate and if I have a time the meds do not work I do the dance and suffer the pain ,but I don't take more medicine until the time comes. 6 hour segments are what I am talking about. Four 6 hour segments in a 24 hour day. If I am going to drive or if i need to keep alert and do a set of books, for my small business, I take a 100mg pill of modafinil. ( a drug that sharpens your brain without any feeling of being high) Another drug most doctors won't prescribe, but he writes for it all the time and to hell with the state. You must find a regime that suits you, and stick with a routine no matter what. This forum will declare you insane, but they are not the sufferers , we are.

Welcome to the very large asylum, called earth.

[Joolsg in reply to Windwalker]

Windwalker, please bear in mind that if you and your neurologist keep increasing Ropinirole you are just ‘feeding the beast’ and the RLS will keep ramping up in intensity. New recommended max dose is 1mg, although there have been some on here taking 12 mg a day, with RLS jerks constantly.

The opioids are a safer & better drug than very high doses of Ropinirole.

Do read the latest posts on Augmentation and people who have got off dopamine agonists.

I really hope you are not suffering too much with high dose Ropinirole.

Take care

Jools

[Windwalker in reply to Joolsg]

I was suffering 24/7 before I got onto ropinirole. I started on 8mg a 24 hr period 12 yrs ago and have not increased or decreased since then.

If the doctors were not so chicken they'd put me to sleep with some kind of anesthetic and keep me asleep as long as needed for me to go thru chemical freedom and gradually awaken me with some available opiate, fed in gradually and let me have whatever dose of an opiate I would need to keep me sane. I few years ago they did this with heroin addicts, and used methadone as the opiate substitute, and for 14 years the person I know well has been able to take the same dose of Methadone for 14 years and function without jerking and jumping and sleeping normally... Either they can't do this legally any more or it is to expensive or more likely than any of that is they just don't give a rats behind whether we can live normally or not. If they detect suicidal tendacies , they lock you in the crazy ward for 5 days and turn you loose without treatment and on the record they say you were cured so they aren't liable to be sued for malpractice.. nuff said....

[Joolsg in reply to Windwalker]

I hear you. I did actually discuss this with a few fellow RLS sufferers. Why can't they put us in a medically induced coma to enable us to get through dopamine agonist withdrawal safely? it would save so much agony.

I think it would happen if a few top neurologists had severe RLS & were going through withdrawal!

[Hidden]

Hi David - Welcome to the forum no one wants to belong to, but are still happy they do! =)

As you said - there is a lot of information on here, and a lot of people willing to help!

[jippylegs]

thanks for all the replies,i am going to look at the link kaarina left & get an appointment with the doc,i also done the survey,i will keep you posted,once again thankyou all.

[Kaarina Administrator in reply to jippylegs]

Hi jippylegs, thank you so much for completing the survey. It really is appreciated.

Do you have any idea as to what may have triggered your symptoms that started about five years ago? If you have not already visited the RLS-UK website, here is the link, should you wish to do so: rls-uk.org

Please do let us know how your appointment goes with the doctor.

[Grandiflora]

For what it's worth, avoid drugs like the plague as they damage and poison the body. Your choice of course. I recently watched a very informative and entertaining YouTube video - one of a series made by a Chiropractor, Dr Gardman (have to double check the name) but he was talking about peripheral neuropathy, in all its forms, including RLS. Go have a listen, he is very personable and funny! He explains in detail how a small misalignment of the spine, pressing on a nerve in one place, manifests as pain, wriggling, burning, etc. somewhere else. Sciatica is just one example. From personal experience, I have very little respect for allopathic medicine other than in emergency situations. You have to make your own choices as to any treatment. Anyway, I have found spinal adjustments very helpful and regular therapeutic massage works miracles. I know it costs money but well worth it. Don't give up, use your own instincts and research, research, research. Your body is unique. God Bless.

[jippylegs]

just like to thank everyone for all the replies & info,i will keep you all up to date,thanks david