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Thread: Who has RLS or PLMD?

  1. #1
    Flashaholic*
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    Default Who has RLS or PLMD?

    Many doctors have never even heard of - let alone know how to treat - "Restless Legs Syndrome" (RLS) and "Periodic Limb Movement Disorder" (PLMD).

    Of all the medical problems I struggle with, these two scare me the most.

    Categorically, these are "movement disorders". They can make life a living hell for those who are afflicted. Also suffering, are the people who live with and sleep with those who are afflicted. After all, if your bed-partner is kicking, jerking, or moving it is unlikely that you will be able to get to sleep until their attack has abated. Statistically, one tenth (10%) of the members of CPF suffer from one or both of these conditions.

    RLS:
    The victim is attacked with an overwhelming, excruciating compulsion to move. This affects large muscle groups such as thighs, calves, shoulders, etc. The muscles do not jerk, but they literally DEMAND to be moved! It is usually described as feeling like worms are crawling in the muscles. The only way to relieve this feeling is to move. So horrible is this feeling that sitting in a car or plane or theater can be “unthinkable”. Going to sleep – or staying asleep – can be impossible. Some people must walk continuously without ever sleeping.

    PLMD:
    This movement disorder is different from RLS in that you do not have any urge to move. Instead, the muscle suddenly jerks – sometimes violently enough to throw the person to the ground. Almost everyone has had the experience where their stomach muscles suddenly jerk just as they were about to fall asleep. Well, PLMD is like that – only much worse.

    I experienced my first RLS attack at about surgery #7 for the detached retina of my left eye. I didn’t even know there was a name for it. Then, I was reading an article in a “Sleep Apnea” group when someone described the symptoms I was having and called it Restless Legs Syndrome. That was fortunate for me, because I discovered that I was not alone and that there were doctors out there that could treat it.

    Thanks to the internet, you can quickly educate yourself on both the symptoms and the treatments available. The problem is that most doctors know nothing about these diseases or how to treat them. So, you find yourself in the position where you know more than your doctor. That is both good and bad. (We all know about doctors and their fragile egos.) RLS and PLMD are different for each patient – what works for you may not work for me. In fact, some treatments will actually make them worse – known as “augmentation”. For example, Levadopa is known to cause augmentation in 80% of patients. I literally fired my first doctor simply because he prescribed that stuff for my RLS. That is an example of where I knew more than the doctor. I was fortunate to have caught this before the augmentation had set in. I immediately started looking for a different doctor. I went through 5 doctors before I found the one I am using now.

    Here is one of many surprises I had. Have you ever heard of “ferritin”? It is one of the ways they measure your body’s iron level. I have never had a doctor ask for the test to be performed. I had to ask the doctor to have the test performed. My first test returned 35. My doctor said that was normal. He was WRONG! He did not know that for RLS patients, 50 is the minimum. I have read where many people have fixed their RLS by simply raising their ferritin count.

    Of all the medical problems I have, RLS and PLMD scare me the most. At this moment, my symptoms are in remission, but it scares me to think about how bad they could become. If I had them as bad as some people I have read about, I would not trust myself in a room with a loaded gun.

    I am still looking for other solutions and remedies. Sooo, do you have symptoms of RLS or PLMD? Then, please share what works for you here.

    Chuck

  2. #2
    Flashaholic*
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    Default Re: Who has RLS or PLMD?

    I sound like I may have it. I have a muscular disease and find the wall by my bed beat up, my toe nails busted up, anything in bed on the floor the next day and even wake myself up with a twitch, thrust of my leg or the urge to stretch my arm, leg and doing so feels soo good and triggers a body wide muscle spasm.

    I find that this occurs the most when I am low on protein. I take 40-120 grams of protein supplement combined with exercise to build myself back up and releave myself of pain. When I do not work out, I slack off the protein and wake up not able to sleep or needed to stretch, so I chug a 40 gram shake.

    You can get pre made shakes at your local viatmin store, powders or for that matter your grocery store or a milk shake and other foods.

  3. #3
    Flashaholic*
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    Default Re: Who has RLS or PLMD?

    cobb,

    I think that may have an affect on me too. I have noticed that when I have too much carbs that things are worse. I'm going to write that one down.

    Chuck

  4. #4

    Default Re: Who has RLS or PLMD?

    I saw a segment on this last night on the news, had never heard of it before. They are testing a dopimine drug that is used in another treatment and trying to get it OKed for RLS.

  5. #5
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    Default Re: Who has RLS or PLMD?

    [ QUOTE ]
    83Venture said:
    I saw a segment on this last night on the news, had never heard of it before. They are testing a dopimine drug that is used in another treatment and trying to get it OKed for RLS.

    [/ QUOTE ]

    Interesting that they are going to the expense of getting it "OKed" for RLS. [img]/ubbthreads/images/graemlins/thinking.gif[/img] As I am sure you already know, all the drugs they use to treat us for RLS are "borrowed" from some other disease - such as Parkinson's. In my case, I am using opiate, pain medications. As far as I have heard, none of them have been FDA approved for RLS.

    Whatever the reasoning, it's good news for us! It's a step in the right direction. [img]/ubbthreads/images/graemlins/sleepy.gif[/img]

    Chuck

  6. #6
    Flashaholic*
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    Default Re: Who has RLS or PLMD?

    Just in case it might be helpful, here are some links to help you self-diagnose:

    Restless Legs Foundation All good diseases have their own foundations. (This is meant to be humorous. [img]/ubbthreads/images/graemlins/crazy.gif[/img])

    A good Yahoo! group.

    Drugs that make things worse! VERY IMPORTANT TO KNOW! I am especially interested about the fact that ALL antidepressants make RLS worse. This is one of those vicious circles: RLS makes you lose sleep. Loss of sleep makes you depressed. The doctor prescribes an antidepressant. The antidepressant makes your RLS worse. This makes your RLS worse. This makes you lose more sleep, which...well, you get it.

    All kinds of movement disorders.


    I am sure there are many more. Please post the ones that you like!


    Chuck

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