Restless Legs Syndrome & Periodic Limb Movement Disorder

Discussion in 'Fibromyalgia Main Forum' started by JLH, Feb 20, 2006.

  1. JLH

    JLH New Member

    Here is a VERY INFORMATIVE personal story about Restless Leg Syndrome that will help you if you have this problem!
    (source indicated at end)

    I first experienced Restless Legs Syndrome (RLS) when I was only 7 or 8 years old (1949 or 1950). Fortunately my mom knew what it was because she also had it, and had done some research to learn ways to avoid these miserable attacks, as well as ways to ease the agony once it started. She told me to avoid caffeine & sugar. She also taught me how to take hot baths when it got really bad. I also noticed that constipation and Restless Leg usually seemed to go hand in hand.

    Over the years it would come and go, but there never seemed to be a pattern that I could identify. I would go for years without any symptoms, and then I would have months of non stop restless leg.

    However, in 1992, after many years of severe stress and emotional trauma the restless leg returned with a vengeance and it never went away. The symptoms would begin around 6pm every evening and would last until the wee hours of the morning. Going to bed only increased the severity so much that I thought I was going to lose my mind. I was miserable, and exhausted, and still had to get up and go to work the next day. Needless to say, I was an emotional and physical wreck. It was only then that I began to seriously seek medical intervention. I was referred to one neurologist after another who tried various medications such as: Klonopin, Elavil, Dalmane, etc. None of them worked and they only made matters worse.

    During that time my mom was hospitalized and diagnosed with Parkinson's Disease. This is relevant only because her hospitalization brought me in contact with a wonderful doctor who was called in to treat her. I was so impressed with his proficiency, and compassion that I promptly made an appointment with him. On my very first visit I took a list of my complaints which included the restless leg. He immediately diagnosed me with Fibromyalgia, and sent me to a specialist for the restless leg. The specialist sent me for a sleep study which showed that I had restless leg and PLMD (periodic limb movement disorder; jerking of all limbs during sleep: fingers, toes, arms, legs, head). PLMD causes interruption of Deep Sleep which is necessary for the mind and body to recover from the stresses of the day (simplistic version). After the results were returned to the specialist he determined that the best treatment option for me was Mirapex 0.5mg for the restless leg and PLMD, and 50mg of Trazodone to help me fall asleep and stay asleep.

    I have been on this same regimen for 9 or more years. Neither drug is habit forming because I have not had to increase the dose ever. The side effects of sleepiness and dizziness subsided in time......or maybe I just got used to them. LOL!! I have learned that alcohol is also a trigger, and to be avoided, especially on a long trip (air, bus, or car).

    I no longer have any problem with restless leg, or PLMD or Fibromyalgia; as long as I take my medications, remain regular, and avoid the triggers: sugar, caffeine, alcohol.

    Let me try to help you understand the difference between RLS & PLMD. RLS is a sensation and need to move ones arms or legs. Although we are usually aware of the sensation during waking hours it can also affect us during sleep. Then it wakes us up with the need to move, and until it subsides we have trouble getting back to sleep. PLMD on the other hand doesn't usually cause us to rouse from sleep, but does interfere with "deep sleep" thus leaving us tired and irritable the next day. PLMD causes the limbs of the body to involuntarily "move or jerk" during sleep. This could be as simple a movement as twitching of the fingers. If the jerking is strong enough, however, you might awaken with your arms or legs jerking or flailing. Before I went on medication I would wake up after hitting myself in the face with a hand or arm. I have kicked my husband during sleep on many occasions. He's very patient and understood that it was a reflex action.

    The only way to diagnose PLMD is to have a sleep test in a diagnostic sleep lab. My last sleep diagnostic determined that I moved or jerked 28 times an hour. That was before medication. My mom's sleep diagnostic determined that she moved or jerked 49 times per hour. She was later diagnosed with Parkinson's Disease, and has since passed away from that horrible disease. I wonder sometimes if the result of years of untreated RLS & PLMD isn't the precursor to Parkinson's. They are all movement disorders.

    I did think at one time that I was cured so I tried to discontinue the medications. I won't ever try that again. Within a few days I returned to the same state I was before I began the medications.

    I am forever grateful to my dear doctor for his expertise in this area, and for the help he has provided in giving me back my quality of life.

    My advice to others suffering this miserable affliction: Keep trying everything out there that medical science has to offer until you find what works for you. Good Luck, and God bless you all!


    Remedy Find's Sleep Disorder Newsletter - Jan. 2006 Issue
    Featured Member's (kaimukigirl) Story
  2. rockindee

    rockindee New Member

    I truly understand this scenario, I too have RLS and PLMD, I take Klonopin and Neurontin for it. As long as I stay away from alcohol, sugar, and Hydrocodone, those meds work for me unless I am constipated. So good to hear that I am not alone, however I am so sorry you are inflicted with this on top of the fibro as I am.

    God Bless us all, take care and thank you for this message
  3. TXFMmom

    TXFMmom New Member

    I have Restless Legg and Periodic Limb Movement.

    Unlike you, my husband simply couldn't sleep with me, and my Sleep doc and Neurologist had to ask, "Does anyone sleep with you?" - My response - "Not even the dog will sleep with me." His response - "Smart dog."

    My restlessness, with PLM was quote "the worst they had ever seen." by the sleep tech and my sleep doc.

    Clonazepam helps, but my bed looks like I have fought a war every morning when I awaken.

    It has taken a real toll on me on the sleep.
  4. EllenComstock

    EllenComstock New Member

    I have problems with both my arms and legs. My doctor put me on Gabitril last year and it has greatly improved.

  5. alaska3355

    alaska3355 New Member

    I had also tried Clonozepam, but it didn't work at all for me. I now take Mirapex, and it is wonderful. See if it doesn't work better for you so you can sleep. Terri
  6. FMhurts

    FMhurts New Member

    I've been taking magnesium for several months now and
    my legs and arms are at rest.
    A nurse told me to try it, said it takes 5 weeks to get into your system, sure enough it did, and I ve only taken one muscle relaxer for Restless leg in 5 months now.
    read up on magnesium defecency. It has been a God send for me.I've had FM for 17 years. outside of pain meds. and sleeping pills, this has been the only thing to help me. My husband says its been a miracle. Cause he has hated watching me tossing a turning all of these years to sleep.
    read up on magnesium defecentcy's.and FM.
    [This Message was Edited on 02/25/2006]
  7. JLH

    JLH New Member

    I'm really glad that you found that magnesium has helped. I think I'm going to give it a try, too.


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