Interested in others' similar experiences with rls

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have had what I have been told is RLS for about 3-4 years now.  Have seen my GP and a neurologist about it. Symptoms are sharp foot pain off and on (sugar levels are always ok), the nearly complete inability to sit still for any length of time after 3:00 or so nearly any day.  Currently taking 2.0 mgs of ropinirole and have taken in the past mirapex, klonopin, gabapentin, and most recently horizant with minimal results if any.  The ropinirole does actually allow me to sleep fairly well.  The neuro gave me a nerve conductivity test (no nerve damage) and I had a sleep study (severe sleep apnea is what I was told).  That test was approximtely 2 years ago and while I hate it, I do use a machine.  The neurologist feels the machine is what will eventually help the rls substantially and he blames my rls primarily on the apnea.  I probably use the sleep machine 60-70% of the time and after taking a while to "get used to it", do pretty well with it now.  The rls symptoms are no better.  Does this sound like anyone else's experience?  The last thing I want to do is complain, but going to a movie, reading a book, or watching TV without standing up to do would sure be nice.  smile

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  • Posted

    Hi

    I can only sympathise! I have the foot pain in my left foot. Oddly it doesn't hurt when I stand on it. I couldn't manage roping role or pramipexole but have recently moved on to Neupro patches. I take clonazepam (klonopln I think) to get me to sleep. I also take tramadol mostly in the evening about 7.30. I have had MRI and nuclear brain scans and the neurologist has concluded that I have severe RLS. I have only had this since April last year. One of my GPs said some months ago that RLS is a horrible condition. I agree!

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  • Posted

    I have had RLS  since 1996. I dreaded the aftermath of a hip operation and having to be seated for a lot of the time. However, until I came off the painkillers, my rls disappeared after my operation. My doctor now gives me dihydrocodeine tablets. I take one about 6pm when my rls gets really uncomfortable, then one before I go to bed. I used to take 2 at 6pm but sometimes woke in the night so now I split them. These tablets are the only ones that have ever helped. If I get rls in the day, I Get up and walk around or try to do something  to distract me. I sometimes used to be up in the night doing ironing or walking round the house. If I visited friends, I had to stand up most of the time to relieve the awful discomfort. I used to get so frustrated and tired. To go to the cinema was impossible unless the film was brilliant and took my mind of the symptoms. Strange they haven't found a cure when it is known that distraction or standing up helps enormously but only for a short time. Good luck.
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  • Posted

    Hello loanarrange,

    I have a suggestion, don't know if it will work or not but there are times when we get to the point where we will try anything for relief of pain or discomfort.  I have gone through times of these restless legs, joints feeling as if they are being forced apart - deep ache in the muscles that only movement can relieve.  I use Olbas Oil,  only a few drops because more will cause burning,  rub this into the area's that you are feeling the discomfort - wash hands after, you do not want this oil any where near your eyes.  It is not expensive and can be bought at a pharmacy or supermarket.....   a few drops only goes a long way,  the relief is .....well a great relief!    It may work,   is worth a try.

    Warmest regards

    Jessie x

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  • Posted

    Hi,

    I doubt foot pain has anything to do with RLS/WED. 

    2mg Ropinirole is a bit high but probably too low for augmentation and the 3pm onset sounds like augmentation.

    Either way a dopamine receptor reset seems the way to go. That means an opioid like methadone for a month and no Ropinirole. 10mg of methadodone is very small and will 100% take RLS away.

    Sleep apnoea means you stop breathing and your body fortunately kicks it in again or you die, keep using mask. Try nasal pillows instead of mask.

    A Neurologist will likely know little about apnoea.   

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    • Posted

      Odd though that the foot pain started after I got RLS. It comes on in the evening and largely disappears by morning. It doesn't affect me at all when I walk and when it is bad and I can't get comfortable the only respite is when I stand. My wife has plantar fasciitis and her pain is with her most of the time. Two tramadol don't lessen the pain either. Odd isn't it
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    • Posted

      I have had RLS for 50 years and it hasn't been associated with any particular foot pain.  I have pains in the feet but I have been told they are due to arthritus.  And another pain that has something to do with my hamstring but I dont know what its cause is.
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    • Posted

      That's interesting but I have no idea if it can be related.   I'll bet any neurologist would say it was coincidence but we might be amazed at how mant others report the same coincidence.

      In my case the RLS came first by about 50 years and then came the tight hammy.     Perhaps its all the kilometres we walk at night?

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  • Posted

    Please search for articles in this forum on the Monash University FODMAP diet.   I have chosen food according to this diet for about a year and it has brought me great relef.   No drugs  but a fairly restrictive diet until you sort out the foods you can eat without a problem.

    This is free with no one making a profit.

    If you need more information then let me know and Ill help.

    Graham

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  • Posted

    l toohave suffered from RLS for a long period of time (5 years or so) and during that time l have been taking pramipexole with only limited relief. Presently l find that a doseage of 0.018mg taken  am and pm is the most effective but unfortunately insomnia has kicked in and l find that short spells  of sleep in total approx  5hours are max.  Symptoms are mostly right sided affecting my foot, leg and upper body and are relieved by movementt (walking) and massaging but now episodes have extended in length (can be up to 2-3 hours) and frequency.

    l see a consultant Neurologist annually but apart from changing my medication he is lacking in ideas-  its very much of a case of managing your own condition and theres nothing more to be done about it. .

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    • Posted

      Hi Jean

      Have you thyought about trying the diet?   I dont expect your neurologist will approve because its not taking scientifically designed drugs that are sold by his favourite drug company.

      All I can say is that its helped be to live again and I know of a half dozen others who have had total relief to partial relief.   There was one person who said it did nothingt for them and I guess that's to be exp[ected.

      Note that its not a matter of eating healthy food.   Some of the banned foods are thoise that people associate with good health.   like Apples pears onion garlic wheat based foods and many others that you might like and might consider healthy.   If you go FODMAP you have to do it seriously or its a waste of time.   Its worth a try    Its much better than walking until 5am and pacing up and down in the back of the cinema or on an aeroplane.

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  • Posted

    I sympathize and empathize. I have been cursed with this demon disease from hell since, well, forever. I had it as a child, adolescent, and now as a middle aged adult. My symptoms are a really awfully bad tickle in my legs, starting in my thighs and moving down into the calf and foot. Horrible. Imagine a metal bristle brush across the bottom of the foot over and over only inside the legs. 

    Drugs. Drugs are the only way to get releif as far as my experience goes. Homeopathy is crap. Soap at the foot of the bed is crap. I'm on Mirapex and Lyrica, sleeping about 6 hours a night now. 

    Best of luck to you. 

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