What do you think CAUSED yoiur RLS?

Please share your experiences, successes, and failures in using non-drug therapies for RLS/WED (methods of relief that don't involve swallowing or injecting anything), including compression, heat, light, stretches, acupuncture, etc. Also under this heading, medical interventions that don't involve the administration of a medicine to the body (eg. varicose-vein operations, deep-brain stimulation). [This forum contains Topics started prior to 2009 that deal with Non-prescription Medicines, Supplements, & Diet.]
trevb
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Post by trevb »

hi, livesfortheone
good to see you posting around, welcome aboard the boat!!

plmd is-

Associated afflictions: RLS is usually associated with involuntary contraction of leg (muscles) during sleep known as periodic limb movements (PLM). (BTW the reverse is not true).

basically its-involuntary kicking of the legs or limbs while youre asleep. some have it some dont. if you have it and have a partner, then yourll already know you have it by the bruises on your partner!!! :?
if you havent got a partner then you may not know you have it (if you do) unless it wakes you up. people may attend sleep studies where they are watched overnight in hospital to see if they have this and how severe it is.
hope this helps?

ViewsAskew
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Post by ViewsAskew »

I still think there is no way to know - none of us, with the exception of obvious secondary causes such as pregnancy, neuropathy, spinal surgery - can say what caused it. And the problem with trying to correlate one event with 'causing' it is that there is no way to prove it. This happens all the time with 'cures' for RLS. How many people have tried the soap and thinks it helps, only to find later that their RLS is just as bad. Chances are the soap didn't help much (possibly placebo effect) but the RLS just happened to be less at that time anyway.

For those who get is after age 45 it gets even tricker as by the time we are 80 or so, the majority of people have it. So, what kicks it in? We don't know. Saying it was one thing or another is only conjecture - they still don't even know how the mechansim works. And there is at least one research who hypothesizes that we may not even all have the same disorder!

I guess what I'm getting at is that I am concerned that people will misunderstand someone's idea and assume it is truth. There are few truths about RLS that are known at this time.

Ann
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Guest

Amazing

Post by Guest »

I think that that is a brilliant idea.

tossingnturning
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Post by tossingnturning »

:cry: [b] Hi everyone. I just registered today. I've had RLS for at least 16 years, since being diagnosed with clinical depression. From the beginning, I was prescribed one anti-depressant after another...by various doctors, at various doses, for various reasons, for various durations. :? However, there was one thing in common, with all of them. I so vividly recall night after sleepless night, unsuccessfully struggling to sleep. I kept telling the doctors...'my legs feel l--o--n--g!' With that statement, they would either look at me as though I were crazy, :roll: or patronize me. As a 'quick fix', I was grossly overmedicated and the mistreated condition worsened with time. And so, here I am. I'm living a virtual nightmare, without the benefit of being asleep. I have several theories, as to the origin of my RLS:

#1. Physical, emotional and/or sexual abuse experienced - for most of my life.
#2. Neglectful mismanagement of medications, by 'professionals'.
#3. Undiagnosed sleep apnea, strongly suspected by my psychiatrist.
#4. Constant stress.
#5. Overweight, by approximately 50 pounds.
#6. Racing thoughts, caused by my mental illness.
#7. The mental illness, itself.
#8. Heredity, as my mother and brother also suffer from RLS.
#9. Anxiety/panic attacks.
I'll stop at 9.

As you can see, it's a sort of 'crap-shoot'. Your guess is as good as mine. The only thing I'm sure of nowadays, is that I can't go on much longer. I'm tired, in more ways than one.

I'm currently taking Effexor, Atarax, Cymbalta and Carbidopa/Levidopa. (I recently went back to C/L, after a horrible four months on Requip. It, intensified my symptoms!) When I was initially taking C/L, I was RLS free! Then, my psychiatrist..in his infinite wisdom, urged my medical doctor to discontinue the C/L. He felt it was causing the paranoia I was experiencing at the time. I later ascertained it was the Lexapro the very same psychiatrist decided to prescribe, in place of the Effexor, which I had been taking (successfully), for years. Hey, they should teach THIS in medical school..."If it ain't broke, don't fix it!"

Now, I'm on double the dose of C/L, I was last taking. I'm at a total loss though, as to why it's NOT working! I thought for sure, after I went back on it, restful sleep would once again become a happy reality. Instead, my symptoms are worse than ever. I take several Atarax (non-addictive) every night, just to 'knock me out' for a couple of hours. Nevertheless, I still find myself walking the floors, doing chores or going online in the wee hours of the morning. Television, is an alternative, but I don't want the sound to disturb neighbors. I've also rocked, swung my legs rapidly, rubbed them, wrapped them or put calf-supports on, cried, cursed, pigged-out on sweets, sat outside in freezing weather, or taken a long drive to 'nowhere'.

My comfort, is knowing that this 'l--o--n--g' feeling in my legs, actually has a name and I'm not the only one who's afflicted with it. Thank you for allowing me this opportunity to vent. Please feel free to e-mail me, if you wish. Gee, maybe I'll sleep tonight. Anyway, I can always hope...right!? God bless you all and keep smilin'!



P.S. Funny thing, I often wonder if any of those 'medical marvels' in my past, ever thought of ME, the first time they heard the term, "Restless Legs Syndrome"! Ya think :?: I'd like to think, the words bit them on their 'scholarly butts'! :lol:
"Help me Lord, to understand why ~
the thorns live on, while the roses die!"

Butterfoot
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tossingnturning

Post by Butterfoot »

Wow tossingnturning,

Sounds like you've been through the mill and back again....over and over and over. :cry: You fell in with the right group here. On those many long and lonely nights when you can't sleep....again...just pull up a chair and log onto this discussion group. You'll find lots of help here, at least emotional and mental. Everyone here has their nightmare tales and are more than willing to listen and give helpful comments. It's a great group of people here. Feel free to vent any time!

As for the Carbidopa/Levidopa, you may be having a problem with augmentation, which this medication has a reputation for causing after a period of use. There are many others out there to be tried. Also, the antidepressants - they're on the list of medications that actually aggravate RLS symptoms. :? I believe Wellbutrin is the only antidepressant that doesn't cause much of a problem. If you check the sticky notes in the "New to RLS" section of this discussion board, you'll find all sorts of excellent information on meds to help, meds to avoid, lifestyle changes, etc etc. There are a few people here who are extremely knowledgeable and have written up a wealth of information.

Hang in there and stick with the rest of us restless folks. When you're ready to scream at the world, you'll find a post here that can make you smile....or read one from someone who's suffering the same as you. It sure helps to know you're not alone. :)

Hope everyone has a restful evening. :wink:

Margot
May only good come your way.

Rubyslipper
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Location: Missouri

Post by Rubyslipper »

Okay, I've seen this thread many times but never read it until today because I don't know what causes my RLS. I've had it for years but recently discovered I also have fibromyalgia and RLS is a symptom of fibro. Which came first? Don't know. I do know that the RLS symptoms are the ones I've had the most trouble with until just about two years ago. I finally found the right meds "cocktail" that allowed me to sleep and function during the day. Then the fibro hit with a vengence and nothing has been right since. I do know that my Mom has RLS and maybe fibro. But she's never been to a doctor to see about them. "I'll just live with it." My sister has fibro but not RLS. Go figure. So whether mine is primary or secondary, I don't know. I recently discovered I also have PLMD (which I also think stands for Please Let Me Die sometimes!) Anyway, that's my 2 cents worth, if it's even worth that. Neph, if you are still checking out this thread, IT WAS GOOD TO HEAR FROM YOU!!! You are one of the people I was talking about in the Talent and Creativity thread. Sure wish you would contact me and send me some pictures of your work. Miss you![/b]
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

EdMac

Post by EdMac »

The Anti-depressants Lexapro and Paxil CR brought mine on. I only took them combined for three weeks I am 48 and had never had any symptoms prior.

ksxroads
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Location: Kansas

Post by ksxroads »

Honestly, I think the origin of RLS probably is as varied as our symptoms and treatments. Might as well throw out that maybe one day the early development of thymus gland will be pinpointed, though they say we really don't need it as adults, who knows. I'm no expert. However, sorry I do not think it is caused by being over weight, anxiety, constant stress, these things are exaberated by the RLS and our ability to obtain restorative sleep which eats away at our sense of well being, our ability to cope with life changing events, etc.

For many years I have sought medical advice, yet most times in frustration would resort to treatment with the diagnosis of depression etc. even though my contention was why do I feel so badly at times that minor annoyances can be devastating and at other times I can deal with major stresses. Here are my varied symptoms... Now I am older and somewhat more assertive and realize that it is physical not psychological ... as I reassure my daughter as she struggles with sleeping problems and rls ...

I am just venting. and praying that each of us finds the help we need.

Love and healing thoughts, Hazel

Touche

What caused my RLS

Post by Touche »

I believe that during a period of high stress (my marriage was falling apart) my RLS began after I was put on Prozac. I have learned that SSRIs are a big NO NO for RLS. My father had PLMD & I never heard him use the term. I am going to begin Requip. Has anyone had a success story?

Penguinrocks
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Post by Penguinrocks »

Hi Touche

If Requip had not caused me serious migraines, i think it would have worked just fine. I seem to be having a good reaction to Neurontin..600 mg right now

Good luck

Penguin
Beware the Penguin

CatMar51

I Don't Know How I Got RLS

Post by CatMar51 »

I have had RLS for as long as I can remember. I think since my 20's only it wasn't as severe as it is today. I don't know if my parents had it because they are both dead. I don't remember them saying anything about it. For the longest time I thought it was just me. I never heard anything about such an infliction. Then one day my daughter's friend's mom told me she had it and she explained what it was. Now I had a name for it. I finally mentiond it to my doctor. He recently put me on Requip. It works!!! I can finally sit at home and relax and watch tv or a movie! I can finally have a restful night's sleep!! :D

karatemom
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Thanks Mom and Dad

Post by karatemom »

I know its genetic. Dad can't sit still, lots of neurological quirks as he has aged. Mom, well really I don't know much regarding RLS on her side so, sorry mom. You got the blame when it's all dad teehee. it's a joke in our family. Anyway....unrelenting stress, chronic illness, meds, etc. all contributed to the severity and progression. I choose to blame those things rather than my age contributing to it. :wink:

Kmom

suzcue
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how many movements per hour???

Post by suzcue »

How do you find this out? Do you have to hook up to a machine or what? I don't know how many movement I have but I know I have to move to get any relief. I have tried a massager (they call it a thumper) and it seems to help but I have to massage for about a half an hour on each leg. Got the thumper from a chiropractor but I believe you can buy them in stores as well.

suzcue

LadyLarke
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Post by LadyLarke »

a subluxation is simply a term that means one (or many) vertebrae are out of line. Go see a chiropractor! Yes you will have to go more than once, but it is so very worth it.

I think my RLS is a direct result of my chronic back pain (mild scoliosis) and pinched nerves (several sports injuries). Definately. Stress is B A D for me period. I just get sicker and have particularly bad pain days. Chiropractor care helps, but it gets expensive if you don't have extended medical.

I haven't been to a sleep study in 2 years. I was diagnosed with severe constructive sleep apnea and have had a cpap since then. I suspect I've gotten RLS since that time as well. Or perhaps I've had it all along and it's just worse now.

So I'm here to learn and educate myself so I can explain to my GP what I need to have med wise or what treatments I'd like to try etc. Coz I am sleeping worse than ever recently. I just can't relax. My knees drive me utterly insane. So far she's prescribe amatryptaline (sp?). And it's an anti-depressant that she claims helps with nerve pain. *boggle* I'll try it. I'm already on celexa, what the hell.
Warm Regards,
Shannon

ViewsAskew
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Post by ViewsAskew »

Shannon, you may need to look no further than the Celexa to find your RLS cause. This is one of the newer antidepressants and most of them (except Wellbrutrin, trazedone and one other), often make RLS worse. Amitryptiline also worsens it for many people, so if I were you, I wouldn't try it.

If you can, consider stopping the Celexa. See what happens. I know that isn't feasible for some people, but maybe you can. If you need something, you can try the Wellbutrin if you haven't already.

Good luck - glad to see you diving right in and posting.

Ann
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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