spreading to rest of the body

Posted , 5 users are following.

Hello all, I have what I thought was RLS, but of a not-too-bad variety, ie if I get up and stretch for a while, it usually goes away sufficiently. But now the feelings have started spreading thoughout the body, even during the day. The hands and forearms are the worst (other than the legs), but it is actually around the eyes as well! Is this normakl? ie, do other people experience the same things or should I be looking into other causes? Thanks!

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  • Posted

    Hi,

    i am a RLS sufferer! I have experienced it in the arms- but only at night and thankfully not very often. Can you tell me how the experience is round the eyes as I can remember, years ago, having weird feelings round my eyes. This was before the RLS was diagnosed.

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    • Posted

      Hi Sashalou,

      Thanks for the quick response! Unfortunately, like the rest of my symptoms, it is a rather difficult feeling to describe. If forced to, I would say it is a tiny bit like the eyes are being pressed and that I need to rub them, but that does not describe it very well. All in all, it is not bad - certainly not as irritating as the legs or hands, but I was just wondering if it was a sign of something else.

      Has your RLS improved since you were diagnosed?

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    • Posted

      I have Rotinigole 3 mg patches which have quite literally changed my life!

      I saw a neurologist 30 years ago who probed my legs and came to the conclusion I had a weak left ankle. I hope the your neurologist can come up with a better diagnosis!

      I may have to try the Fodmap diet- there seem to be a few people on the forum suggesting that it is good.

      Have you had any spinal injury? It seems to me that my slipped disc was the start of my problem.

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    • Posted

      No, no spinal injury. No injuries of any kind really. I have been lucky to have been so healthy. 

      Was your RLS very bad before the medication?

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    • Posted

      Yeah! I was suicidal. Couldn't sit anywhere after 4 o'clock. I was living in Cape Town when RLS was at it's worst and had to fly back to UK on several ocassions - those night flights were horrendous- I literally walked up and down the plane for 12 hours! Couldn't go to the theatre , the cinema or out with friends! Pure pain in the legs. Hope you never come to this stage. My sleep patterns aren't good now but at least it's not because of pain! Just to prove a point I've just been out for a late lunch/dinner. Couldn't have survived it before. Keep in touch- this forum can be so very helpful for you.
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    • Posted

      Glad you have got relief from RLS. At least it is accepted as a condition now. Doctors just thought I was nuts 30 years ago and did nothing. It's debilitating at it's worst as we sufferers all know. Guess there won't be a cure anytime soon.
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  • Posted

    Hi Rory

    Sorry to hear of your symptoms. I started with RLS in legs then spread to arms. I find arms worse than legs. I often have RLS in one limb which moves around the body ie leg, arm, other arm, other leg. As one limb starts the preceding limb stops. This can be over a few hours at night but in a bad case it will do 2 laps!

    Just joined this forum and read about Fodmap diet. So far have cut out items I know are bad for me and have had 3 better nights out of 4. Let's hope.... Never had it in my eyes (yet). Good Luck, John

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    • Posted

      Hi John,

      Thanks for sharing your experiences. I will look at the Fodmap diet! Your symptoms sound a bit different than mine. Do massages help you?

      Good luck to you as well!

      Rory

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    • Posted

      Hi John,

      Walking and sitting do not really help me. If I sit, the symptoms simply continue. If I walk, they may disappear while I am walking, but immediately return upon stopping. Massage and stretching really do help me - massaging more so. And no, not a trick to get my girlfriend to give me massages! wink

      Rory

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  • Posted

    Have never heard of RLS in the hands and around the eyes, I think you need to get this checked out with your Doctor. My experiences of RLS are like snakes moving up and down in my legs causing them to jump all the time, also have it in my upper arms. May be someone else has experienced the same symptons you have. Hope you get some help.
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    • Posted

      Thanks for your perspective. For me, snakes would not be a great description. I might say more "radiating". Yes, I think I will go see a neurologist soon - the symptoms are getting worse, though certainly not unbearable yet.

      The hands for me is rather common, actually, though not as much as the legs - only when I am quite tired.

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    • Posted

      Hi Rory   I used to have bad RLS in the legs.    Looking back I think it was alsosometimes in the arms at the same time.   Legs dominated my mind when they were giving trouble.

      I was thinking about a neurologist.   When I finally found a GP who believed in RLS he thought a neurologist might help.  So I paid about AUD350 to a neurologist who told me that the drugs I had tried but were unusable were about the best he could suggest so there was not much the medical profession could do. I told him that I had an improvement by going on a gluten free diet although it was still not as good as I would like,   He was sarcastic about my chances of a diet doing any good at all and wished me luck about 10 minutes after he first spoke to me.   I understand he was in a hurry to catch a flight to China where he was a respected foriegn expert.

      One day I will be bothered to tell him that diet worked where he was useless

      It raises the question of how do you choose a neurologist?   I think in the past I have accepted the judgement of my GP but that didn't work very well.

      I expect it would be illegal or risky to actually name any neurologist who we have found to be exceptionally good in this forum.   There are sites like "Rate my Agent"   is there any chance for "Rate my medical support person"?

      Perhaps the information could be kept really brief and objective like "I consulted Mt Bob Down and I still have RLS just as bad as before he treated me"    WE would all interpret that as "choose someone else"

      Any ideas along these lines?

      Cheers

       

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