How many have RLS/ PLMD?

Discussion in 'Fibromyalgia Main Forum' started by gapsych, Aug 5, 2009.

  1. gapsych

    gapsych New Member

    How many people on this board have RLS and PLMD?

    Do you take medication and how were you diagnosed?

    At what age were you diagnosed or noticed symptoms?

    If you have any other information about you or someone you know with this, please post.



    [This Message was Edited on 08/05/2009]
  2. TigerLilea

    TigerLilea Active Member

    As I am getting older, I seem to be developing RLS. It isn't every night, however, several times a week it seems to bother me for short periods of time. I have read that it is sometimes due to being deficient in the B vitamins, however, I don't know if there is any truth to that or not. I was also wondering if possibly it could be a part of going through perimenopause as it seems to have started around the same time as many other peri symptoms. I'll have to check into this sometime when I have a few minutes.

    Take care.
  3. gapsych

    gapsych New Member

    It is my understanding that RLS can be made worse by being anemic but does not cause it. don't know about the B vitamins. I think some people do use magnesium and report results, but it caused me to have stomach problems.

    RLS is considered a neurological disease.

    I take a combination of a low dose of trazodone and 1 mg. clonazepam which is also for my other sleep disorders.

    I have had it since I was 16, usually worse in the summer but that could be a coincidence.

    My neurologist diagnosed me in my early forties and reconfirmed several years later by a sleep study. The trazodone and clonazapam stopped the symptoms.

    However when I became very anemic, mirapex was added. Once my iron count was okay, I did not need the mirapex but continued with the other two meds.

    About six months ago I needed to add mirapex which I continue to take maybe one to two nights per month.

    My fibro pain is also worse in my legs and the pain is somewhat similar to FM pain.

    [This Message was Edited on 08/05/2009]
  4. ourlife

    ourlife New Member

    I have had RLS since i was in middle school but only got diagnosed with it about 12 years ago. I'm 34 now. I take Mirapex every night. Before i started taking it i would have to sleep standing up. Now that i have FM it's alot worse and in my arms now. Sometimes i take two mirapex. Klonopin doesn't work for mine.

    You can take HOT showers and then jump in the bed and that helps alot.
  5. gapsych

    gapsych New Member

    RLS and PLMD are both recognized as neurological disorders.

    Most people get the occasional beneign leg jerks that are more annoying and do not disrupt sleep.

    RLS is described as not getting as many leg jerks and may experience these feelings during the day. PLMD usually only occurs at night and your legs move more. However the parameters of diagnosing often overlap and have changed over the years. It gets more confusing as many people have both RLS and PLMD. There may be updated information on this, if so, someone let me know.

    Moving your legs helps the pain. Most people whether you have RLS or not, will occasionally get benign leg jerks, especially when going to sleep.

    It is very uncomfortable, a very deep achy sensation, for me and have had it reach to an 8+ on the pain scale. I will sometimes get the sensations in my lower arms and even during the day. Some people report different types of leg sensations but equally as painful.


    "Restless legs syndrome was described as early as the 16th century but was not studied until the 1940s. People with RLS complain of an irresistible urge to move their legs while at rest. A person with RLS will experience a vague, uncomfortable feeling while at rest that is only relieved by moving the legs."

    The neurologist who diagnosed me was actually my daughter's pediatric neurologist and he was taking a detailed health history for her migraines. It was confirmed by a sleep study even though I did not move my legs much as it can also be diagnosed on the patient's symptoms and health history.

    My daughter's Pediatric Neurologist was on the national board for the Restless Leg Syndrome Foundation, years ago and has written many papers. Both his wife and daughter have it.

    In about fifty percent of the cases it is inherited though now it is thought more. It gets worse as you age, and if you are anemic.

    If you want more information go to the following website.

    I just bumped up an article posted by nofool which has some updated information on RLS/PLMD.

    Hope this helps.


    [This Message was Edited on 08/06/2009]
  6. steach

    steach Member

    I have been dx with RLS for many years now. Thank goodness Klonopin works. About a year ago, the Klonopin had to be increased, though. I don't know what I'd do without the medication.

    Since I have such sensivity to soooo many meds, I'd be afraid to try something else -and- the cost of the newer meds is not affordable for me. Klonopin is available in a generic form and is about $13.00 for me.

    I'm not sure what "PLMD" stands for.

  7. gapsych

    gapsych New Member

    Hi Steach, PLMD means Periodic Leg Movement Disorder. As I said, the definitions/symptoms of each disorder are rather fuzzy and can overlap.

    One of the medications Mirapex, is an older drug. For rls/plmd you take a low dose of Mirapex which in larger doses is for Parkinson's Disease and some movement disorders.

    My mirapex costs the same as the klonepen. If the Klonepin works, I would stay on that, but consult your doctor.

    [This Message was Edited on 08/06/2009]
  8. TeaBisqit

    TeaBisqit Member

    It's hard to tell with me, I'm all over the bed at night. But I have had boughts of some kind of RLS, usually after drinking something with caffeine in it. Then I'll be really bad that night and will notice my legs going all over the place and do have the weird feelings in them.

    Since I've cut out caffeine, chocolate, and most things with lots of preservatives, I notice a big difference there.
  9. gapsych

    gapsych New Member

    I do try to avoid caffeine at night as sometimes it will make the RLS worse.

    The one thing that really makes my RLS worse is Benedryl. Go figure.

  10. zeowa

    zeowa New Member

    Is actually periodic limb movement disorder. I have it and I've had it quite badly over the last year, though I'd had periods of it before. I have the symptoms mostly in my upper body (almost never my legs) and I sometimes have tried to count the "jumps" and gotten up past 125 and stopped out of sheer exhaustion. My arms, hands, wrists, shoulders are the worst, but it also manifests as swallowing involuntarily upon falling asleep (very unpleasant).

    I've been on Benadryl for over 5 yrs nightly for sleep so I'm really curious about it making RLS worse! Since CFS, Benadryl and klonopin/clonazepam have been my saviors for sleep (I get very weird and disturbing reactions to all the sleep meds out there and any antidepressants used for sleep). Yikes, I need to look into this!

    I had hoped that low iron or other vitamin deficiencies would be the cause of mine, but I really haven't been able to link it, though diets without caffeine, sugar, etc. are one of the best things you can do. I just saw a doc last week who said that it is a neuro-immune response to the CFS (body either being invaded or sending out a response as if it has been).
    [This Message was Edited on 08/09/2009]
  11. gapsych

    gapsych New Member

    You are right about it being limb and not leg. I think I had legs on my mind!!!! :D

    Interesting about the benedryl. Hopefully that is not what is going on since it has helped with your sleep. I wonder if anyone else has had the same problem with it? Have you tried the mirapex?

    [This Message was Edited on 08/09/2009]
  12. zeowa

    zeowa New Member

    I know the feeling--limbs and legs and insomnia (oh my!) on the brain!!

    When I was googling about the Benadryl last night I came across some mention of Atarax (or hydroxyzine) causing similar problems (All I know is it's considered the 'grandfather of Benadryl' and is my go to for horrific insomnia that nothing else will touch). A little bulb went off in my head because, while I usually only use the Atarax sporadically, I used it for several weeks non-stop many months ago and the side effects were troubling and the 'periodic' became more 'persistent.'

    I have tried the Mirapex and had a host of side effects, which seems to be my reaction to any medication that supplies, tries to control, or contains serotonin. I thought that I'd really figured something out with the Benadryl since histamine is one of the lesser-known neurotransmitters--and I couldn't see why for some histamine couldn't be as important as seratonin, but I'm definitely not the norm in terms of drug side effects!

    I'm still curious about Neurontin (and have read around these parts the difference between gabapentin and the brand name med), but even a sleep doc who gave me a script said "It will make you a bear," apparently meaning mood swings, etc. and I keep reading about 30+ weight gains on it (and that won't help my sleep).
    [This Message was Edited on 08/09/2009]
  13. steach

    steach Member

    between RLS and PLM? I don't notice my upper limbs jerking and being restless but my legs are. I have been told by my fincee that I am all over the bed at night.

    Is it safe to take Benadryl with the Klonopin? Have any of you taken this combination with or wothout dr. supervision?