RLS and Pain

[guthriedog]

Dear All, I did the math on a calculator and about fell off the chair. I have had RLS for 49 years. and I know the very night it started. Wow, that's amazingly awful. It took me several years to find Mirapex which does help. I hate Mirapex because of the side effects. I love Mirapex because it does help.

I had to have both knees replaced and naively thought the restless legs might disappear. Well. while I was numb, I had no RLS symptoms. However, when my legs woke up, I found out that pain makes RLS worse and RLS increases the pain. So no it didn't go away. I was really dreaming! I would love to find something else that would work. I have tried most every thing available with no success. It hits me now at any time it chooses even in church (:)) How rude! I also can affect my left arm. When it's really bad, I do my best really hard workout. My husband and I have learned to laugh a bit about the thrashing. No one really knows what this is like unless you have had it.

I wish there was a class action suit against the producers because of what this drug does to your brain, impulse control, and the effects you have if you try to get off of it. Be healthy, and safe. I really enjoy reading your stories. Elaine J

[Hidden]

Hi Elaine, I can appreciate your talk of taking a class action.

It seems that you are suffering from augmentation, which in case you haven';t heard of it, is casued by long term use of taking pramipexole (Mirapex) or any other dopamine agonist (DA) i.e. ropinirole or rotigotine.

Augmentation is where, instead of relieving RLS the DA makes it worse. It is indicated by the symptoms spreading from the legs to other parts of the body and happening not just in the evening but at other times of the day.

If you have augmentation it is actually better to stop taking the pramipexole and take nothing at all than it is to continue with it.

However, there are other medications that can help with RLS and pramipexole can be replaced with something else.

Do not suddenly stop taking it!!!!!

I'm sorry I'm not writing any more tonight. there have been sl many people on this site today suffering the consequences of taking pramipexole. or at risk of it. Perhaps you could read some of the posts submitted today and you'll get more information.

In the meantime here's a link to a useful article.

sleepreviewmag.com/uncatego...

My fingers are worn out

[wickedrls in reply to Hidden]

the webpage to which you refer is 5 years old!

[Hidden in reply to wickedrls]

The information in is still current though. Augmentation still exists.

The way of dealing with is still the same.

The section on augmentation in the article below gives more detailed discussion on augmentation

uptodate.com/contents/treat...

This was published in October 2019.

[Joolsg]

As Manerva advises, sounds very much like you’re suffering Augmentation. The higher the dose and the longer you’ve been on Mirapex, the higher the likelihood it’s augmentation.

Most of us came on this site because our RLS was getting worse and our doctors and neurologists were useless.

Many of us have got off dopamine agonists like Mirapex and are now doing much better on other meds.

Look at the pinned post ( top of page) and watch the video of Dr Early explaining what augmentation is.

If you get off it ( very, very slowly- minimum of 3 months) the RLS will no longer happen in the day and probably not at night either.

Also raise serum ferritin above 100, preferably 300 & avoid meds that make it worse.

[guthriedog in reply to Joolsg]

What do you do if ferritin levels are normal? I actually cut down Mirapex to a half a tab at night. I was so thrilled and it seemed to be working. But it didn't last. I wish there was a list of foods, drugs, etc. that made RLS worse on this site. It would be helpful to start somewhere. Unfortunately, I see a lot of depression in the stories which I totally understand. Are there medical doctors on this cite? We all have symptoms and stories, but it would be so helpful to be able to have a Q/A with a DR.

[Joolsg in reply to guthriedog]

Most people on here are more knowledgeable than most GPs and general neurologists because we’ve been badly let down by our doctors so have researched the condition.

Best book to read is

Clinical Management of RLS by Drs Buchfuhrer, Allen, Lee and Hening. You can get used copies on Amazon and it’s very readable by the lay person.

Also consider joining rls.org the USA RLS foundation- costs $35 and you get access to all their online webcasts by top RLS experts and all the meds to avoid are listed.

Food is different- there is no general list as people react to different triggers.

Some people find sugar and alcohol worsen their RLS, others caffeine.

I personally find sugar, alcohol and caffeine relieve my RLS.

However, certain meds definitely worsen RLS and they are most anti depressants and anti histamines.

Have a look at the main RLS UK site and you’ll find useful articles on Augmentation and meds that can worsen RLS.

Another useful site is run by Dr Buchfuhrer in California

rlshelp.org/

Look at the latest question and answers- very helpful.

You can email Dr Buchfuhrer and he will answer ( he doesn’t charge).

His email is

[e-mail]

He’s a stickler for correct spelling and grammar.

By the way, ask for actual numbers from iron panel blood tests. They tell you anything above 15 is ‘normal’ but for RLS, numbers should be much higher.

[guthriedog in reply to Joolsg]

Thank you