RLS for almost 40 years:(!: I thought I... - Restless Legs Syn...

Restless Legs Syndrome

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RLS for almost 40 years:(!

nursekvp profile image
7 Replies

I thought I would throw in some of what I have learned in the years that I have endured this life altering situation. Thank God there is more information available now than 40 years ago.

Anyways, both my mom and daughter have RLS but never needed to go beyond increasing their ferritin levels. I see a doctor whose specialty is RLS...of course that only occurred about 25 years ago after my PCP (primary care provider) finally had no more tricks to pull out from her sleeves. If the PCP is not educated on (RLS), find a specialist. My trialed me on so many controlled meds that if I wasn’t a nurse and new the potential of addiction, I would probably be living on a street corner looking for a fix. As it turned out, the majority of the pain meds, oxycodones, vicodins , and controlled sleep meds, along with many of the anti anxiety meds actually can make RLS worse. Not sure if you all have a horrible time after drinking any alcohol😩? Same sort of issue often occurs with the meds mentioned above. I was then put on simemet, short acting type and long acting type. It was a miracle for about 5 years, until I started with rebound effects and was experiencing RLS 24/7 when I only had it eve-night. Thankfully I didn’t sit much at my job! That is when I went to specialist. 1st thing he checked was my ferritin level. I stress ferritin cuz my pcp told me I didn’t need it done cuz I wasn’t anemic. However, my ferritin level was 1/3 of level it needed to be. Began the iron with the vitamin c in it, 2 tabs/day. Also transitioned to requip. O.25 mg tabs, 5 /day. Spread out starting at 2 pm. Once ferritin level was up and requip kicked in, I was back to living my life again! Last year, 10 years after the above, I started having issues with RLS again. Had taken management role and was sitting more. My ferritin level was low again, too. MD increased my requip. Max is 0.25 mg tabs-8/day or 4 mg/ day. He timed these pills based on when symptoms start and were worse, etc. Once again, I knew when my ferritin level was back up and the new schedule of meds kicked in! I’m currently going on 1 year of new schedule. In addition, he did give me clonazepam 0.5 mg tab if I have a few days when the meds don’t seem to work. The reason for this drug is that RLS can increase with anxiety, I start to get very anxious when I have a few nights in a row with RLS. It breaks the cycle.

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7 Replies
Pam34 profile image
Pam34

Glad it’s working for you. Beware of augmentation on the requip. Max recommended dose now is 1mg. Unfortunately doctors haven’t caught up with this yet!

LotteM profile image
LotteM

I am afraid the clonazepam is currently cutting the mustard for you, and not the Requip (ropinirole). Please read all you can about augmentation. This forum has a search function. Also, see e.g. rls-uk.org/news/augmentation. Probably you will soon have to come off the Requip. If so, don’t have your pcp put you on another dopamine agonsit, such as Mirapexin (pramipexole). Keep is posted!

Kaarina profile image
KaarinaAdministrator

Here is an excellent link on Augmentation: sleepreviewmag.com/2015/02/...

Thanks for sharing! I’m glad the clonazepam does it’s job for you!

Graham3196 profile image
Graham3196

I am interested to know what your actual ferritin level was and what the ferritin level needs to be raised to in order to stop the symptoms.

Thanks

Graham

Mona23 profile image
Mona23 in reply toGraham3196

Graham, my ferritin level was 47, and it should be 75 or so for non-RLS people; RLS sufferers seem to need their ferritin levels to be 100 or more. What level reduces symptoms is very individally specific. I’m taking an iron supplement now, fro LifeZone - just started so no results to post yet. I’ll have bloodwork in 3 months to check it again.

I could have written your post. When Requip didn't work for me any more I switched to Meripex (Pramipexole) and was fine. I take .75mg tabs 3 times a day - 10:00am, 3:00pm and 10:00pm. Everyone has to find their own way of dealing with RLS and I also went through many years of 'experimenting' with different medications. The sleep clinic was the craziest. I found the information about Requip by myself and had to convince my doctor to give me a prescription. It worked the first night. Now she listens to me - says I'm her 'expert' on RLS. You know yourself better than anyone else - take what other people say with a grain of salt. Good luck.

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