Fed up.: Hi have been taking... - Restless Legs Syn...

Restless Legs Syndrome

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Fed up.

Lavagna1 profile image
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Hi have been taking pramipexole for almost 2 months ... Some days it does not work ...I also get RLS symptoms in my arms some days....I am really at the end of tether ...I need to something to work permanently...does anyone have any other ideas.....also the appetite and weight gain is not good .... I have put on 10lb but it could easily go further as my appetite has increased so much.....  I really am so distressed with it all ...had it for years ....Please help someone. 

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Lavagna1 profile image
Lavagna1
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4 Replies

I know how you feel and you are not going to like my answer but there is nothing that I have heard of that works permanently.

HOWEVER, the good news is that there are a variety of drugs that can be used in a cyclic sort of manner and can bring relief.

First port of call would be here:

rlshelp.org.

see treatment page link on left.

You can also get benefit from cannabis, (depending on its legality you may or may not want to try that one).

And for me Kratom, has been the best drug, a few others on here use it too but check its legal status in your area.

I've found relief form very hot baths although only for short periods its better than nothing.

I hope this helps, take care.

nightdancer profile image
nightdancer

I agree with Raffs,  it is a fact of RLS, as in many neurological diseases,  that nothing helps permanently. There is no one med that works all of the time for anyone. If it is, it is rare. Can I ask what dose of pramipexole you are taking? And, has it been increased over the 2 months? One of the main side effects of pramipexole and any dopamine med is weight gain, compulsive eating/behavior, so that all ties in. There are other classes of meds to try, so this may not be the med for you. Treating RLS is all trial and error, so the best idea is to educate yourself on what CAN be done. But, there is nothing right NOW that will fix it permanently, there is no cure as of yet. rlshelp.org  has a great treatment page. Also, are you on any other meds for anything else?? There are man meds that can make RLS worse. That is also on the treatment page of the web site I gave you. The doses of the dopamine meds are a bit outdated, his web master has not fixed it yet, so it shows the most recent therapeutic doses, so the doses listed there ARE too high. But the rest of the web site is golden. Johns Hopkins has an RLS center with a huge section on their web site. But, check to see if you are on any other meds that COULD make your RLS worse also. Knowledge is power and there is no one answer fro all of us, sadly. But, read, read read. ;) 

Insomniak profile image
Insomniak

Has your doctor referred you through to an RLS specialist? I spent over a year trying varying medications prescribed by my GP sometimes with no success at all. The RLS consultant when I met him was much more clued in about available treatments and I have had 12 months since then on a recently developed slow release Modutab Requip (Ropinrole) which has virtually eliminated my RLS. Just saying that seeing a specialist is a must.

nightdancer profile image
nightdancer

I know how you feel, and as raffs has said there is nothing that works for everyone and nothing that works permanently or all the time. There is no cure, only treatments, so check out the treatment page on the web site raffs gave to you. It can be hard to find something that works MOST of the time, bit nothing works ALL of the time,. My RLS is 90% controlled by opiates and Clonazepam. But even they do not work 100% of the time. The thing to do is to do your research on reputable web sites and stay away from sites that advertise "miracle cures" anyone who promises a cure is only after your money. :(

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