Do the drugs really help?

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
rlj0863
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Joined: Sat Apr 23, 2011 12:26 pm

Do the drugs really help?

Postby rlj0863 » Mon Apr 25, 2011 4:28 pm

I was just given a script of Ropinirole and have been staring at it for four days. Finally trying to get my head around the idea that I might have RLS! I have been thinking I am just hyperactive because I can't stop moving around no matter how exhausted. In a permanent state of fidgeting. Is this typical of RLS? Like I can never tire my legs complemented with a fair dose of anxiety most of the time unless I am exercising. I have been taking Trazadone for sleep and do ok on it but not great...thoughts anyone?

Thanks I am new to this world.

Polar Bear
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Postby Polar Bear » Mon Apr 25, 2011 6:01 pm

Welcome to our site.

We are just sorry that you think you may have RLS.

RLS can occur occasionally, or almost all of the time, depending on its severity. There are 4 essential criteria that are all necessary for diagnosis:

1) A need to move the legs, usually accompanied or caused by uncomfortable, unpleasant sensations in the legs. Any kind of sensation may be a manifestation of RLS and a wide variety of descriptions have been used ranging from "painful" or "burning" to "Elvis legs". Sometimes the need to move is present without the uncomfortable sensations and sometimes the arms or other body parts are involved in addition to the legs.
2) The need to move and unpleasant sensations are exclusively present or worsen during periods of rest or inactivity such as lying or sitting
3) The need to move and unpleasant sensations are partially or totally relieved by movement such as walking or stretching at least as long as the activity continues.
4) The need to move and unpleasant sensations are generally worse or exclusively occur in the evening or night.

Moderate exercise appears to be of some benefit, some exercise helps but too much does not help. The difficulty is that 'moderate' is individual to the sufferer.

Iron levels can be a part of the condition. An ordinary blood test may show your iron levels as ok and it is your serum ferritin levels that need to be checked.

Many of us have difficulty in finding a natural solution to our symptoms however you may find some tips on how to cope on the RLS Rebel site. Here is the link:
http://members.cox.net/gunzel/index.html

The Mayo Clinic Algorithm is a wonderful source of information for treatment and can be accessed via the link in my signature.

There is a great deal of information throughout the site and indeed I was desperate when I found this group. The information led me to treatment and to some semblence of normality.......

None of us are medical doctors but we do have a lot of experience of dealing with RLS.

You say that you can't stop moving your legs around... fidgeting.... do you have an unbearable sensation that eases when you walk for a time?

Check out the criteria above.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Betty/WV
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Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Postby Betty/WV » Mon Apr 25, 2011 6:11 pm

Polar Bear covered almost all bases as to RLS. But the meds do work. I have had RLS/EKD (Ekbom Disease) for over 40 years and nothing worked until a doctor prescribed Mirapex (pramipexole). It has relieved my RLS/EKD and I at least can lie down or sit down. But I still have difficulty sleeping, probably from all the years that I didn't sleep.

Like Polar Bear, I was desperate when I by accident came upon this site. I was walking the floor crying, I was so miserable. And I stood up at the computer and poured out all my feelings. And for the first time, someone understood and was sympathetic to me. I check in almost every day.

Hope you find relief. Wish you the best.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

ViewsAskew
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Location: Chicago

Postby ViewsAskew » Mon Apr 25, 2011 6:27 pm

I certainly can't add anything more than what these two venerable members have added. Hope you figure out if this is RLS or not and then find what you need to help.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Location: Chicago

Postby ViewsAskew » Mon Apr 25, 2011 6:31 pm

I started thinking about what rlj0863 said about anxiety.

My RLS is as if anxiety was in my arms and legs, not just my head. I'm extremely anxious when I have RLS and that anxiety permeates my whole self.

Not sure if that helps any, but is my experience.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Postby badnights » Mon Apr 25, 2011 10:30 pm

One of the supportive criteria for Ekbom disease (formerlly called RLS) is a positive response to ropinirole. In other words, if the Ekbom/RLS diagnosis is in doubt and you improve on ropinirole, that lends support to the diagnosis.

But it's important to check your serum ferritin before getting on too high a dose of ropinirole. One of the main problems with that class of drugs (called dopamine agonists (DAs)) in Ekbom/RLS is the phenomenon of augmentation, which is a worsening of symptoms due to taking the DA. (Briefly, the drug works for a few hours but symptoms start up again earlier the next day or spread to other body parts, forcing you to increase the dose or take an additional, earlier dose; which then causes the symptoms to start even earlier, etc).

Augmentation does not happen to all RLSers - witness all the happy RLSers on DAs - but there is apparently a fair bit of clinical experience that it's more likely to happen to people with low blood levels of ferritin. (Augmentation is not applicable to Parkinson's patients; some doctors who have prescribed DAs for Parkinson's are not familiar with this potential problem in RLS.)

I think it's imperative you get your ferritin checked, preferably before starting the ropinirole. Ask for the actual number, not just a verdict of normal or abnormal, because many labs and doctors still call 20 ng/litre normal, whereas in Ekbom/RLS it is understood that 50 ng/litre is a bare minimum and 100-200 ng/litre is preferable.

Ferrous sulphate, taken with vitamin C to allow absorption, is the recommended oral supplement to raise your ferritin levels, according to a book I have, and it's what I used to get my ferritin up (I tried ferrous gluconate and it didn't work well).

Keep in touch to let us know how you're doing, and how the ropinirole affects you.


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