RLS Progression?

[ACMcEwan]

Friday, June 3

Welcome to

ACMcEwan, who has RLS and OSA that was diagnosed in 2006 and the RLS is getting progressively worse.

A slow worsening with time is not unusual with RLS. See what you can find that might be helpful and feel free to post a note asking any questions that you have.

Thanks, Steve!

I am on .50-.75 Requip at night. .25 when I have to fly or long car ride.

In the past few weeks, I am noticing more hip and back movement is needed, not just foot and leg. Has anyone else dealt with this progression?

Last night I found myself sitting up and literally rocking and swiveling to decrease the creepy crawlies.

I hope I can find some answers from other members, most people don't understand RLS at all!

[Rustsmith]

I am noticing more hip and back movement is needed, not just foot and leg.

Unfortunately the progression from the legs to other parts of the body that you have described is not unusual. It can either come from a progression of the disease as we age or as an effect of the use of a dopamine agonist, such as your Requip, that results in a phenomenon known as augmentation. Take a look at the links included in my signature and in badnight's signature to learn more about augmentation.

So how long has you been taking Requip? Some members have been successful using it for many years and other have experienced augmentation in a matter of a couple of weeks. Also, has your doctor checked your ferritin level? If so, do you know what it was? Frequently we are told that ferritin levels are normal, only normal for the general population is anything over 20. For those of us with RLS, especially if on a dopamine drug, the levels should be over 75 and preferably over 100.

Finally, you are correct that most people do not understand RLS and unfortunately that includes many doctors and even a large number of neurologists. Hopefully you have a doctor who understands RLS and if you are starting to augment on Requip, hopefully he/she will also know what can and cannot be done to handle this condition.

[badnights]

Hi AC, and welcome to the board.
I'm sorry you had to find your way to us, but I'm sure you'll feel less alone after talking to people here. We all understand RLS (or WED, as I prefer to call it).

Steve has given you some good information. You're going to need all the information you can absorb, it really turns out to be our most important tool in getting help for this disease. Augmentation is something almost unique to RLS/WED and the dopamine medications, so lots of doctors aren't familiar with it. Their response when their patients describe worsening symptoms is to prescribe higher doses of the medication that was helping. They don't realize, though, that the medication is causing the worsening. It helps as expected within 1.5 or 2 hours of taking it, but the symptoms come earlier and earlier in the day, spread to other body parts, fire up sooner after you sit down or lie down, or become more intense, so the medication does not seem to work as well or last as long.

My doctor, when I told him I thought I was augmenting and explained what it was, said "But my Parkinson's patients take this for years without getting worse". He was very open and wiling to learn, and quickly learned, but that just shows where he was coming from - augmentation is unheard of, and the very same medication is used successfully with no such problems for Parkinson's patients.

The only "cure" for augmentation is to get off the dopamine medication. This entails grief, because there is a withdrawal reaction during which symptoms get even worse.

So arm yourself with some information. First go to the RLS Foundation website, click Patient at the top, click Publications at the left, and download "What is Augmentation?"
Become a member, log in, go to Members Only, click Member Publications at the left, and download "Augmentation: A quick Guide" and "Augmentation FAQ"
All three of these brochures have valuable information.

Also, see the link below my signature. I've been meaning to clean that page up for a while - - but here are two things that would be useful:
- the extract from Clinical Management
- Buchfuhrer's 2012 paper

For your own information, and/or to give your doctor, I recommend the Foundation's guide to RLS/WED for doctors, also on the Member Publications page- scroll down the last section, called For Healthcare Providers, and download WED/RLS Medical Bulletin

And do get your ferritin checked, if it is below 75 you should probably, with the OK of your doctor, be taking oral iron supplements. For some people, raising their ferritin reduces symptom severity. Low levels are associated with increased risk of augmenation.