Posted , 15 users are following.
I've had RLS as long as I remember but I can't cope with it any more. Any time I sit down it comes on bad and no hope of falling asleep. I have been trying to sleep for 3 hours now but I cannot keep still and the jerking and stretching doesn't stop for a second. Desperate for relief..
3 likes, 16 replies
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Basia19 Blewbird
Posted
Hello Blewbird
I use pramipexole it's used for Parkinson's, but it works for RLS
your doctor will decide whether to start you on a small dose, but a quick release one or maybe the larger dose but slow release.
Good luck
RobertT Blewbird
Posted
Ropinirole tablets or rotigotine patches are the most usual solution when the problem gets as bad as yours. We'll have to trust your doctor knows which is best for you.
abas30621 Blewbird
Posted
gogsie65 Blewbird
Posted
Hi there had rls for 10yrs now tried everything but this seems to
Work to my relief tried to calm my anxiety by telling myself to relax
and calm down and it works mind over matter sort of thing,so I
tried it on my rls situation it worked I just simply said to myself
When the legs would start up " calm legs" over and over as you
relax your mind it also relaxes the signals to your legs.
You'll feel yourself relaxing you and your mind thus not sending
any anxious stress messages from your brain to all over your body
including your rls please give this a serious try it works...
locin Blewbird
Posted
Suggest you join a meditation class and pester your GP to make sure you get an effective medication.
Good luck
Nic
beagle Blewbird
Posted
Your GP is unlikely to be an expert and hopefully he may refer you to a specialist. They should be able to check for any deficiencies e.g. Iron or magnesium which would be an easy fix. You will need to become your own expert ( that's what specialist told me!). Read the book RLS by Buchfuhrer, Hening etc and use these forums. If some nights are worse than others look for what your triggers are: stress, food, bedtimes, medication. Are you on any medication for anything else - often a source of RLS. Try to reduce triggers. Gp will be able to prescribe dopamine agonists, painkillers etc and you will find relief. Good luck!
dianne92682 Blewbird
Posted
I've suffered rls for 26 years. Been on meds 16 years..clonazepam 0.5 mg 2 at night. This works for me. Occasionally I'll wake in the night with the symptoms and need either more clonazepam or one co codamol which are prescription strength for a back problem. I sometimes think rls and lower back pain are related. Maybe I'll start a new question on the subject. Hope you find some relief ..don't give up.
L-cat Blewbird
Posted
Siempre Blewbird
Posted
As beagle says it is important to check both your blood iron and ferritin levels. My RLS became so much worse over several months until tests showed very low levels of ferritin. It was easily treated with a course of Ferrous Fumarate (210mg). It didn't cure my RLS of course, but it is more manageable now.
Chich61 Blewbird
Edited
I can comprehend what your saying. The RLS is driving me absolutely crazy. My doctor prescribed Sifrol which works a treat. Even told him that they are gold. However when I can't get into the doctors to get another script for a few days and my tablets have run out OMG does the RLS give me hurry curry and sleep is almost non existent. I get up and walk around for a little bit but to no avail. I get so angry when this happens because I just want to go to sleep but the RLS doesn't allow it. It's mostly in my left leg yet I get bad cramps in my right leg. Also have it in my arms but it's nowhere near as bad as the RLS yet. I have been anaemic for as long as I can remember so going to try to build it up by taking iron tablets. Hopefully it helps.
PeterAK Blewbird
Posted
(0.5 mg of pramipexole with 25 mg topiramate) three times a day saved my life. I have 24 hour a day version. If you can tolerate the topiramate it is very good solution.
donna56789 PeterAK
Edited
Maybe these are suggestions I can make to my Dr. I am not familiar with either of those drugs. My rls is also around the clock. Is yours isolated to just your legs? I feel mine EVERYWHERE.
PeterAK donna56789
Posted
Mine is mostly in my legs, at least that is where it starts. The pramipexole is called Mirapex and is primarily a Parkinson drug I believe. The Topiramate is also called Topamax and is commonly used for migraines at 100 mg per day. I first used it to control an adverse drug reaction to Ambien. At 150 to 200 mg per day I noticed it wiped out my RLS, but it also wiped me out.
Nobody seems to be sure how Topiramate works and there can be interesting side effects. When you use the Topiramate you have to be careful to increase the dose gradually over time. Don't get stuck on the precise times, use what feels right to you. You might not have to go with the Mirapex , you might be able to get the topiramate to work with the drug you are presently taking. Everybody's RLS appears to be different from everybody's else so the solutions will likely be different.
donna56789 Blewbird
Posted
I feel your pain 10 fold. I have tried Ropinerole, Gabapentin, and Neupro. I also take a sleep aid (which honestly only makes me more sleepy than I already am) and as a result adds to my misery. I have tried leg massages, bay leaf tea, cold showers, and an over the counter rls leg cream. My bed time is in a room that is always cold, with the ceiling fan on, dark, and at the approximate same time. I wish I could suggest something to you that will help. I am hoping someone out there can relate to my experiences and suggest something new I can try.
Good luck.
ruth80595 Blewbird
Posted
hi bluebird i empathise with you as ive also had it years..probably 53 in fact...unfortunately not a lot is known about rls in NEW Zealand by Doctors..i was finally diagnosed by a sleep clinic doctor about 20 years ago..he started me on sinamet,,but 6 months down the track it wasnt having much of an affect and something much stronger was prescribed..it was banned ten years ago here ,so ropinerole was next..my mum and sister both have this hideous affliction...as we know this is something that can stem from many differant things..one theory is an old injury site...for me i had a motorbike crash when about 20 and the handle bars left me with a long groove in my left thigh....i feel a lot of rls stems from that groove..i think the nerves in that area were badly damaged.....ANYHOW one of my semi life savers has been the use of a fairly robust hand held massage unit....initially massaging the tail bone area was great..but after trialing many areas i found using it on the pubic bone area has given me the best relief...the firmer the better...just one caution..make sure you remember to turn it off ..as you are going into a sleepy faze...its been a fantastic help in giving me a few hours sleep..