Doc laughed when I told him I think I have RLS..

Posted , 5 users are following.

Hey I’m new to this group. I remember the first night I got the crawling sensation about 5 years ago. It was the night before I moved away to college and I was nervous so naturally I assumed it was related to my anxiety. Then I started noticing it come back every few months, sometimes for a few days at a time and sometimes a few weeks at a time. Trust me I have looked up the symptoms of RLS and am almost positive I have it. I think my case has been relatively mild although I have had some horrible nights here and there. I went to a foot doctor due to an ankle sprain recently and mentioned to him that I thought I have RLS. He basically laughed at me and told me that RLS is more serious than what I am describing and that the feeling I’m getting before bed is probably because my ankles/calves are tired from using them during the day. Now, I AM currently 80lbs overweight due to a hormonal disorder, BUT I’m young and have strong legs, so I’m not sure I’m buying this whole “tired” nonsense (although that thought is promising). Plus, even if I’m at home being a bum all day, the crawling sensation will come at night, sometimes even worse!

Has anyone ever been told this and could he be right? Or could it be related to my anxiety disorder and hormonal syndrome? 

I’m beginning to worry as I’ve read that RLS only gets worse with age. The only thing that works for me right now is elevating my legs with a foam roller and rolling out my calves. Any advice, stories, or information would be much appreciated and thank you for reading!

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8 Replies

  • Posted

    Hi,  I had restless legs when I was younger, though not as young as you, and then it went away for years. It recently returned.  There are different methods and medicines that can help.  I don't know why some of these help some people and not others.  You have to experiment with what helps you.  I suggest you read the posts and find methods to try first that aren't medication.  Good luck!

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    • Posted

      Hi Kathy,

      My wife was told (or read) that a bar of soap in the bed works for RLS, so of course I will give that a try as it can't do any harm, but there are a lot of things that don't work as you know and I imagine a bar of soap will be one of them.

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  • Posted

    eliana,

    Below is a copy of the reply I made to another member of the group. Bless your heart, I know how you feel. There is help; it's just hard to find.

    ------------

    You have walked in to a very complicated condition that can be very difficult to treat. Everyone is different. (I have had RLS for many years.)

    First, I suggest that you go to www.RLS.org (RLS Foundation). To get full access to everything they offer you must join. I have been a member for many years. They are wonderful people, and help both patients and doctors.

    Second, you must educate yourself on all the different meds. Be aware of "augmentation". Many doctors are not aware that meds can sooner-or-later make your RLS much worse. (Opioids don't do this, but of course they are very controversial these days.)

    Another thing you must learn about is your "ferritin iron level". Many doctors do not routinely test for this. People with RLS need their ferritin levels to be much higher (100+) than those without RLS (35). The RLS Foundation has lots of info about this.

    A good doctor can be hard to find. I suggest you consider doctors that specialize in sleep medicine, neurology, respiratory therapists, even allergy doctors sometimes take an interest in this.

    May God bless you.

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  • Posted

    Hello,

    For what it is worth consider the following. 

    I have suffered for forty years with this and have been diagnosed with PLMD (Periodic Limb Movement Disorder) rather than RLS. The two are similar but my understanding is there are two major differences. PLMD is mostly nocturnal and is therefore less severe or at least less debilitating. It only occurs for me at night and that is not so for RLS sufferers who can have a problem 24 hours a day.

    The first thing you should do is find a doctor who won't laugh at you and get a proper diagnosis. In my country (Australia) most general practitioners are familiar with the issues and sleep disorder specialists certainly are. A specialist I went to - who was also a sufferer - admitted they have no idea what causes it and I think that is true. But there are treatments. So, find someone who can diagnose you as that would be a great start.

    Trevor

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    • Posted

      I think that is correct Eliana. I never have a problem until I go to sleep and characteristically it seems to be at 45 minutes or exactly twice that when the problem first starts for me. I am managing it with a prescription which works 99% of the time and has few visible side effects. When you are correctly diagnosed we will swap notes.
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  • Posted

    PMLD and RLS are very different conditions.  PMLD involves INVOLUNTARY leg movements, usually when asleep.  RLS Involves VOLUNTARY movement - though the urge to move can be overwhelming, so "voluntary" is a debateable term!  Since it's voluntary, the movements of RLS by definition occur when you are awake or possibly in a very light sleep, but the sensations that drive the need to move can wake you from the deepest sleep.

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