Do RLS symptoms include hot hands, legs, face and ears?Does anyone have similar experiences?

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I have suffered from RLS for many years and am presently on Ropinarole. This helps with the jerky limb movement which start about mid evening but it does little or nothing for the other symptoms which include hot hands, legs , face, ears and tingling skin. I have a cold shower when I go to bed and sometimes 2 further showers when the condition keeps me awake.In extreme situatkions I have had to resort to patting my limbs with a bag of frozen peas.

However, on reading the experiences of other RLS sufferers in this blog I am beginning to wonder whether all of my symptoms are RLS related. Does anyone share my experiences?

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11 Replies

  • Posted

    I am also on Ropinirole but still have thrashing legs. As to heat I feel hot feet, knees and between my legs. Standing on a cold floor helps for a short time. I also have the urge to eat when the symptoms are prevalent ( I usually stand on the cold kitchen floor near the goodies cupboard ). The symptoms can occur before bedtime, which is bad enough, but the worst is when they occur whilst in bed. I no longer share the marital bed for fear of inflicting physical damge on the wife.

    ​Like you one wonders if all these symptoms are related. Incidently my symptoms worsened each time I have had the trauma of medical operation

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    • Posted

      Thanks eric79356. Having read the replies to my original post I get the impression that my hot hands etc problem is not necessarily RSL-related. I take Felodopine blood pressure tablets and have just checked the patient information leaflet which says that "flushing" is one of the common side effects.  

      I am awaiting a consultation with a neurologist to explore my RSL condition generally and will mention the "flushing" issue and report back on this site.

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  • Posted

    Interesting subject:  On occasion I have a sensation behind my earrings, like a want to scratch a skin irritation.  But it's not.  It's the nerves.  I never thought of any relation to the general RLS situation, which is some nerve thing, I guess.  Who knows - I think the general syndrome can manifest in strange ways in different people.  I wouldn't blame it for every variation, but so little is know about RLS.
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  • Posted

    Dear Bernie

    I have found the opposite.  I hadn't made any connection between these symptoms and RLS but over the last ten years my RLS got worse and roughly over the same time frame I have changed from someone who needed a sheet on the bed on cold nights to a shivering jelly who has about 4 blankets and a doona.

    Now I have changed my diet my RLS symptoms have almost gone but I still do an iceberg act at night.   Perhaps there is a connection but it hadn't occurred to me.

    Incidently Bernie have you tried the FODMAP diet described in another discussion here titled RLS and Diet?

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    • Posted

      Thanks Graham. I am the opposite in bed, I am more comfortable with just  a sheet covering me, no duvet since it seems to spark off the RSL tingling sensations and consequential sleep problems. I have not heard about the FODMAP diet and cannot find it in another discussion, can you please elaborate?
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  • Posted

     I do not have the hot face and extremities.   Just restless legs.  It used to bother me at bedtime but now it awakens me at intervals all night.  Once awake, of course my bladder who tell me I have to "go"... so at first I thought it was a bladder problem that I'd get up 3 or 4 times a night.  But I went for a sleep study and they said it was the RLS.   I tried taking a prescription med for RLS but it made me so sick I never took more than one pill.  I can't remember which it was but it woke me up about 4 a.m with shakes, nausea and weakness.  It was scary.   Then I was taking Xanax to fall sleep despite the RLS but now that it occurs at 3 or 4 a.m. it's useless.   I just suffer with it.
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  • Posted

    Hi Bernie

    I posted a reply and it disappeared.   I probably bored the computer so I'll be quick.

    There is a discussion in this topic titled "Restless legs and Diet"

    In there I have given some links to useful web sites that describe the diet.

    The diet was developed for people with irritable bowel syndrome but I found that it seems to have application for RLS.    Perhaps there is a common cause of food allergies for both syndromes?   The FODMAP name refers to five (I think)  types of carbohydrates that some people might be allergic to.

    The idea is that you adopt the FODMAP exclusion diet for a short time like 8 to 12 weeks and then you symptoms will be gone and you start to expand your diet by re-introducing foods one  group at ther time.  Its not only the type of food but the quantity that matters.

    After some time you then know which carbohydrate group or groups you can't eat.

    You then go the rest of your life avoiding, for example, Lactose and enjoying everything else and not experiencing ibs or RLS.

    In my case I dont seem to ba able to re-introduce anything without a problem.   My doctor says this can be really hard and I need a good dietician to help me do it.    I've been living on the exclusion diet for a year now.   My Rls is almost gone and I haven't starved to death so I reckon I am ahead.

    In my case I have to be absolutely strict or I suffer for two nights but that hasn't happened for 4 months or more.     I still get a bit of RLS but nothing like it was and I need no drugs.   Thats just as well because I found I reacted badly to all the drugs we tried.

    The other thing is I hear people say they are on a FODMAP diet and aeting healthy food in which they include a lot of banned fgruit and veges.  Healthy unless you are blessed by allergy.    I dont think the exclusion diet could be described as healthy  but its better than living on 2 hours sleep and 5 hours of walking around in small circles!!

    The FODMAP has worked in almost every case of an RLS patient tring it.   I only know of five people directly so its not a big sample.   In ibs victims it is said to work in 70% of cases so I have no real idea of whether it will help you but the odds look pretty good and it costs almost nothing to try.   All the inhformation is proivided free by the main developers.   Monash University in Melbourne developed the diet but I think thay have become a bit mean with their free support.   However they sell a good book and a mobile phone App for about AUD10 each so its not too bad.

    Good luck

    Cheers

    Graham

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  • Posted

    this is a horrid thing to do through isnt it.  I am only 45 yrs old but for three yrs i had the restless legs, arms bad, thrashing about at night also, wearing wholes in sheets lol.  Hubby saying how i throw my legs about etc. I hd a blood test and they found i was low in iron, so she gave me iron liquid and  this was not to fix the restless legs it was to get my iron up but from day one it fixed it. Now i have proved it this last week because i got a bit sloppy and forgot to take it alot over the last week and started to get a little jittery before going to bed and not sleeping as well as i would with the iron. From day one of taking the iron liquid which was about six months ago i have rid myself of restless legs and slept, hope th is helps some ofyou

     

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    • Posted

      Dear Leanne

      That's wonderful news.   I also take extra iron even though blood tests say I am not deficient.  It helped a lot before I went on the FODMAP diet but I can't tell if its still necessary.  I am too scared to stop in case something goes wrong and I lose some of my improvement.

      Great to hear how well it worked.

      Graham

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  • Posted

    Since my original post, and on the advice of an alternative therapy expert I have tried out Schuessler tissue salts (Magnesium Phosphate No.8). I have been taking these as a supplement to Ropinarole. I have to say that I doubted the therapists advice but in fact they have made a significant difference by calming my twitchy legs in the early evening and now get a much better nioghts sleep. The usual RLS tingling in the legs still exists but it is much less severe than it was.

    I dont yet know whether there any compatibility isssues with the use of these salts and Ropinarole and am waiting to speak to my doctor. However in the meantime I would welcome any other experiences of the use of these salts.    

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