To those with Painful RLS and Requip

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Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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To those with Painful RLS and Requip

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I've been periodically reading the board for about a year now and have found it very helpful. But, I'm in a little bit of a quandry and would really appreciate the opinions/past experiences of others.

I've had primarily painful RLS since I was little..."growing pains"--a few times a month. When it continued as a teen, young adult, and then adult, I assumed it was something that everyone went through. I also have sporadic episodes where my feet will get very hot (inside and out). So, all of this definitely sucked but since it was only a few times a month it was no big deal. It is important to note, that the pain was way worse of a symptom than the fidgety-ness ever was.

But, interestingly enough...I've also been extremely tired my whole life. The best sleep I ever get is in the 5-7 AM range or later. Not too conducive to adult working life. You know, called lazy, but darn it I was just always tired!

Flash forward to Jan 2005 and the pain symptoms were now part of every day and the 'electricity' running through my legs (and sometimes hands and lower arms) was constant. I can't even quantify the fidgety-ness b/c the pain was so intrusive. This led me to going to a neuro and was given the RLS stamp after a sleep study in May 2005. I had only a few PLMD's during the night but enough for official diagnosis. I do also recall boyfriend indicating that I did kick him sometimes but not every night and not a lot.

So, I started on the Requip after the diagnosis (first trying unsuccessfully amitryptylene, trazodone)...

I am currently taking taking the 1mg of Requip before bed. I have more fidgety-ness now sometimes when going to sleep but the pain isn't 24/7 anymore and I have also gotten a low level vicodin prescription for any breakthrough (I think it is the 5/500)--I have to take 2 for it to get rid of the pain and yes, it gets rid of the electric sensations too--and the fidgets. OTC pain meds NEVER worked at all. I am trying ambien one night a week separately since with or without RLS symtpoms, I sleep like crap, can't fall asleep and can't stay asleep.

The Dr would like to increase the dosage of Requip to 1 1/2 mg's at night and I tried it for a few weeks and didn't notice any differences in the symptoms..same amount of breakthrough, fidgety-ness, sleep quality, etc. so I went back down to the 1 mg. She doesn't know this yet as she was ill for the appt I should have had last week and can't reschedule me until Sept.

Do you think I should stop the Requip and reassess the symptoms more carefully and then start back up? I just can't be sure if the increase in typical RLS symptoms is b/c of the Requip or if it is just part and parcel with my particular RLS getting worse. It is certainly better than 24/7 pain but I don't feel entirely comfortable with vicodin being a lifetime solution--especially since that leaves me up to a Dr's whim of determining if enough is enough with it. Plus, taking all that acetaminaphen that is in the vicodin concerns me. Since it has also been only about a year, the thought of having to increase the dose on the Requip is also scary since where might that lead to in years to come?

I don't know. I just feel like at this rate, seeing the neuro every 3 months, I'll be tweaking things forever just for the chance to be 'normal'.

But, other than that Mrs. Lincoln, how did you enjoy the play?!

Kristen

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Dear Kristen,

Others are more articulate in responding to medication questions, than I am - so I am certain that soon someone else will be responding.

It is so frustrating to live with RLS, and the constant analysis can be all consuming... You are right that it is possible that the Requip may be increasing your RLS sensations, which I know you are probably all ready familiar with the term augmentation.

I feel very fortuante that the hydrocodone apa (vicodin, lortab) 5/500 1-2 at night usually takes care of my RLS sensations and Ultram/tramadol keeps my daily RLS at bay.

However, neither of those medications helped with problems with getting to sleep or staying asleep. Not certain but theorize that my problems with sleep which seem to be on a monthly cycle are probably related to whatever causes the RLS ... The dr had me try several medications which either made things worse or didn't help ... The doctor recently prescribed Ambien CR nightly. Before using the hydrocodone/ultram, just plain Ambien did nothing ... it was like taking a sugar pill.

I am not all that thrilled about taking this medication long term, but am getting too old to keep up with work with nights without sleep. It is amazing what our bodies and minds will endure for years! I virtually remodeled our home during the nights & worked a day job when I was 20 years younger. Just can't do that any more.

Please keep us posted on your progress. I know your sharing your experience will help others.

*****************Positive Thoughts*************

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

Music can be made anywhere, is invisible and does not smell. --W H Auden

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