Restless legs

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Hi

I have suffered with restless legs for the past 20 years.  I am 53 and the last couple of years it has been worst.  My doctor just gives me pramipexitone and has increased the dosage but it hasn’t helped. He says that’s the best on the market and there is nothing else they can do.    I dread evenings as every evening it starts some evenings I can’t sit down it’s that bad.  It seems to make my bladder sensitive as well as I constantly feel like I need a wee.  Im constantly rubbing my legs as they tingle but I have uncontrollable spasms in them.  If anyone has any advice or knows of anyone that could help me.  It’s ruining my life.  It wakes me up in the night, I work full time and am constantly tired.  Many thanks carol 

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  • Posted

    Carol ... I am 51 and have noticed the same thing .. it’s been worse the past 2 years for me .  I take gabapentin 600 mg every night . I have just recently added Wellbutrin 150 am and pm . I can actually say I am seeing improvements. Maybe stress and anxiety makesRLS worse . I am just like you . I hate going to bed or long trips because I can’t stand it .  I have never heard of the pill you are taking . They want to ween me off if gabapentin in 3 months ..  I am sorry you suffer too. It is not fun having RLS!! 
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  • Posted

    Pramapexatone is prob the best out there along with ropinorol there are many others but don’t work for everyone I to suffer severely from it it and I take ropinorol 4mg per day previously had been on pramapexol (mirapex) for years but had side effects so came of them on advice of my nuerologist, I do still suffer some evenings but there are some foods or other triggers that cause it to flare up like if you smoke that’s a trigger point for me so I quit them, opioids are another med that can help but may not be for everyone tramadal, OxyContin are 2 that I use from time to time but strictly not on a regular basis for obvious reasons, also look into a mild sedative to help relax and sleep from time to time .

    It’s not exactly all what you would like to hear with all these meds involved but this rls truely is a horrible thing to have and effects our quality of life dramatically speak with a neurologist if you have one and discuss and try all options available never just settle for” o just look after your diet drink lots of milk get some excercise”  it is a awful thing to have and not to many are aware how to treat it properly or understand it fully only us sufferers good luck with it 

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  • Posted

    I make a blend of magnesium oil with some essential oils. I always have some made up and at the first sign I rub it in to my legs. I also take a Magnesium tablet every day. It won't work for everyone but as ready made oil is on sale in Amazon it must help quite a few.

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  • Posted

    Hi Carol 

    I feel for you - RLS is hard to live with. I take pramipexole as well and over the years I’ve increased the dosage. I also take amitriptyline and the two together help me settle and sleep. Alcohol is a big trigger for my RLS  as is  extreme tiredness and lack of exercise.  My experience is that it is hereditary and becomes much more severe after 50 (I am now 64). This probably doesn’t help you but good luck and I hope you can find a way to ease it a bit. 

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    • Posted

      Hi..u husband takes the same for his rls. It helps tremendously however, he has had such a large weight gain

      But without ..well it's impossible for him . He has tried different meds but had opposite reaction. He was up for 48 hours straight. Although he jokes that during that time his legs didn't bother him. He is just at his wits end. Wish there was something else to help him. Such a horrible problem for him

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  • Posted

    Oh Carol,

    I feel you pain.  I have not suffered for that long but in the last couple years I too had more and more issues with my legs and everything you describe is a lot as I have experienced.  My neurologist had prescribed the pramipexol as well as.  As the doses were increased things just eventually got worse.  My doctor didn't know what else to do other than prescribe gabapentine as well.  Nothing seemed to work.  And I too worked full time and would always fall asleep at my desk.  I just couldn't function.  Eventually my doctor referred me to Mayo Clinic to their neurological sleep center. This was last October.  I am now doctoring with a german doctor that specializes in restess legs.  She said the pramipexole augmented which means it no longer works, that it essentially makes things much much worse.  The Mayo doctor took me OFF the pramipexole over a several week period and told me things would get worse before better.  She was so very right.  That time period was the worst ever, but I made it through and I am now on the Neupro Patch (a transdermal patch made for Parkisons, but it DOES work).  I also take some Gabapentine in addition.  After some trial and error I am able to pretty much control the restless legs as long as I take the medicaton and wear the patch regularly and keep up the exact schedule I have.  This is not a cure-all because about once a week I have a spell when my nights are awful. 

    I don't know where you live, but if in the US, Mayo Clinic in Rochester, MN can be of great help to you.  I highly recommend them.  And if you need to know the doctor's name I can get that do you as well. 

    BUT, if anything you need to get OFF of the pramipexole slowly, over several weeks and if you are not seeing a Neurologist, you need to get refered. 

    Restless legs is a horrific disease.  And it is a bit different for everyone. 

    Goodluck.

     

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  • Posted

    Dopamine Agonists lead to Augmention, particularly when you reach tolerance and an unknowing GP suggests increasing it. Pramipexole, Ropinorole and Rotigotine patches are all DA’s so beware. 4mg of Ropinorole is way too high! Google Augmention, most GP’s are unaware. Augmention is Hell and withdrawal takes ages but Tramadol can help during that period. Anti-depressants such as Amitriptelene make RLS much worse for most people. There is a list of no-no drugs for RLS, I think on, RLS-UK.org.

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    • Posted

      Correction, the list of drugs to avoid for RLS is on RLShelp.org under Medical Alert cards. Worth carrying with you when visiting your GP, it could have saved me an awful experience when I was given Amitriptelene!

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  • Posted

    Hi carol

    I had restless leg pretty bad, and the doctor give me 2mg morphine to take each morning and I sleep like a baby, I don't need to take it every night, as 2mg seems to work for a few nights, and I don't want to get addicted,if I haven't taken the morphine for a couple of nights and I feel my legs going then I just take a tablet in the morning as it takes about 12 hours to work. Hope this helps

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  • Posted

    So sorry Carol. Nothing really works. I've had fewer and less intense attacks since taking magnesium. No drugs or pharmaceutical drugs work. You could try pot. May make it more bearable

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  • Posted

    Hi Carol,

    These things have been the most helpful for me:

    1) Soaking my legs in a hot bath

    2) I've made bean bags filled with wheat berries (which are good at holding heat).  About 16' by 6". I made mine of flannel, then washable covers of fleece.  When filling, leave enough room for the wheat berries to move around. Heat in the microwave for about 3 minutes, shake, then heat another 2-3 minutes.  Put at the back of your knees and hold with legs bent. (I find what works best for me is in bed with my rear end in the air).  This has been very effective. 

    3) Calf stretches

    4) Distraction, such as watching a good video.

    Good luck!

    Kathy

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  • Posted

    Hello Carol, I had RL since childhood and have been on every med available.  A few months ago I was desperate and contacted a Neurologist who treats RLS.  I am now on Iron supplementation even though my lab. values are normal.  Apparently, there are some individuals who do not utilize iron normally and require more iron.  The website, RLS Foundation lists M.D.’s who treat RLS.  Johns Hopkins has an excellent website explaining this..Blood values need to be monitored regularly.  I am now symptom free. For several months prior, I had RL constantly unless I was on my feet.
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    • Posted

      It is important to have your Ferritin level checked and to ask for the result. 20 can be considered ‘normal’ and would be dismissed by a GP but RLS sufferers need higher levels, around 100, for our neurotransmitters to get through to our brains to tell them to switch off our damned legs! An easy fix for some of us and one of the first things that should be checked. I have a level around 100 so additional iron is of no use to me.
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  • Posted

    Interesting  what works for some and not for others.  The Neupro patch worked but gave me  the most horrendous headache - was sure I was having a stroke.  Younger years I had cluster headaches and this was as bad or even worse.  Got off immediately.  Gabapentin for me causes depression, paranoia and not much help with RLS.  Requip worked for quite a while and then augmented.  Off for a while and now take a very low dose with Robaxin (a muscle relaxant I've taken for probably 50 years for RLS) 500- 750 mg, and finally, my saving grace. 10 mg of Norco nightly with the other two.  Have absolutely no addictive feelings with the Norco (an opiod) but in conjunction with .12 of Requip and the Robaxin as my legs are getting going at night or just relaxing watching TV earlier in the day - after about an hour or so it's like ahhhh - finally the pain and jumpiness is gone.  I'm fortunate that my doctor gives me no grief about prescribing the Norco for without it I can't imagine what life would be like.  It's frustrating as no one med seems to work for everyone.  I also use Lidocaine 5% pain patches and super strong Ben Gay or Salonpas pain creams slathered on my feet, legs, sometimes arms, knees, whatever is aching.  My RLS has progressed to very painful as well as jumpy.  Once in a while I have a really bad bout and take more Robaxin and pain meds PLUS scalding hot showers on my legs to numb the nerves.  Eventually things seems to kick in and the pain and twitching lets up.  Bottom line, RLS Society more and more is finding opiod pain meds are working.  Know they  (opiods) are the Boogieman of meds right now. But I have no adverse affects or cravings for the Norco - just use it to ward off the pain when needed.  Try various label and off label meds to see what might work for you.

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