Not just legs!

Please share your experiences, successes, and failures in using non-drug therapies for WED/RLS (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.]
Hubby

Not just legs!

Post by Hubby »

I've just recently learned of RLS and am in the "research" mode. Everyone's comments are very interesting (and sometimes quite humorous :lol: )

What used to be just my legs (every 15 seconds according to my wife)has now developed into arms and bouncing torso . I have two different sensations - my arms and legs react similar to when I received accupuncture and could feel the electrical surge tighten my muscles; it's like a tightening of the muscles for a short duration. Recently, I wake myself up throughout the night with arms, legs and a jumping torso :shock:

Does this sound familiar to anyone or should I be looking for something other than RLS?

Getting tired!
Hubby

sardsy75
Posts: 862
Joined: Thu Mar 18, 2004 8:56 am
Location: Queensland, Australia

Re: Not just legs!

Post by sardsy75 »

Hi Hubby :)

Hubby wrote:I've just recently learned of RLS and am in the "research" mode. Everyone's comments are very interesting (and sometimes quite humorous :lol: )


Firstly, welcome to our group. I knew the minute I read your above comment that you will fit right in ... if we don't laugh, we cry, and crying is far more exhausting than laughing ... hence the sometimes questionably humourous posts :wink: There is always at least one "ear" available for gnawing on in here most hours of the day, so feel free to get in here and let off steam, keep us up to date, tell a bad joke, whatever!

Hubby wrote:What used to be just my legs (every 15 seconds according to my wife)has now developed into arms and bouncing torso . I have two different sensations - my arms and legs react similar to when I received accupuncture and could feel the electrical surge tighten my muscles; it's like a tightening of the muscles for a short duration. Recently, I wake myself up throughout the night with arms, legs and a jumping torso :shock:

Does this sound familiar to anyone or should I be looking for something other than RLS?

Getting tired!
Hubby


My advice to you is that you should probably book yourself in for a sleep test to see if you have PLMS (Periodic Limb Movement Syndrome), also known as nocturnal myoclonus, on top of your RLS. Your rythmic involuntary movements kinda point in that direction, and it's not uncommon to have both RLS and PLMS.

I've attached a couple of links for you below which might help you, your wife, and your doctor/s out:

http://www.sleepfoundation.org/publicat ... t_plms.cfm
http://www.wemove.org/myo/
http://www.talkaboutsleep.com/sleepdiso ... intro1.htm

If you haven't checked it out already, take a look at the Healthcare Provider directory on this site I've put the link below. You might find someone relatively close to you; unfortunately there's noone listed in Alberta; but don't let distance stop you from finding someone knowledgeable. Some Neuro's, like mine, travel to other towns to see their patients.

http://beta.restlesslegs.org/provider_d ... ctory.html

Take care of you and keep us posted on your journey!
Nadia

My philosophy is simply this: Life is too short to be diplomatic. Your friends should not care what you do, or say; and for those who are not your friends ... their loss!!!

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

Hi Hubby,I just started here too.I've been posting under the topic" Urge not to move". I am so relieved to have found someone with the exact symptoms as mine.When I tell a provider or anyone for that matter they look at me like i'm crazy..Like you my butt,arms ahoulders are involved and they move all of the time too..Within the past couple of years i've had nerve conduction studies and when they shoot the electrical current in my legs I say thats nothing thats how RLS feels.So weird you mentioned the acupuncture.

I'm very active during sleep times,very busy while asleep-actually doing things dh told me.I pick his arms up and begin a process of putting them wherever I want them to go,usually in the air but most recently I was trying to throw my little Cocker,when I woke up I was grunting and I had her on the butt with both hands and she was about to become airborn.
It totally scared me to death.
I have learned so much here,gotten great advice(which I've already acted on ) and now i'll read your links too.
talk soon,
Brenda
Finally able to sleep on average 9 hours a night!
Brenda

ihaterls

Post by ihaterls »

i also get it in my arms... like, if i have the rls in my left leg, i have it in my left arm- the whole side of my left body.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Hi ihaterls

Post by becat »

Great name IhateRls,
Your right, it can effect a side or the whole body. It's different for all of us. We come here to share our ideas, problems, and educate ourselves on how to cope with this stuff.
I hope you check back in and tell a little more about your RLS. You sound a bit younger than most of us. I'm interested to know how your dealing with it and have you seen a doctor yet?
i do hope to hear from you again. We are listening and we're here for you.

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

I hate rls too! I'm glad you came and I hope you come back.
Like you I see more periodic leg movement disorder on one side.
My hip/butt/shoulders.
The RLS attacks either side and is extremely annoying to say the least.
Since you mentioned 1 side do you have PLMD too? Just curious.

Anyway,I've gotten alot of help here and since I joined I finally got my sleep study ordered by being more assertive.I'm still angry at my DOctor for not wanting to order it and not listening to me by ordering yet another antidepressant for sleep.At least I got one thing I wanted.

Have a great non RLS week :!:
Finally able to sleep on average 9 hours a night!
Brenda

wantoscream

Post by wantoscream »

I had it soooo bad on a late flight home the other night from California. My left leg and then my thigh, my stomach, chest and even the back of my head were all affected. It seriously made me so jittery and i felt like i was just going to burst with annoyance.

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Hi there

Post by becat »

Hi wantoscream, another great name.........
I too hate to fly. It just doesn't horrible things to my body. I've taken to medicating for flights longer than an hour or so. It's just better to sleep through it then try to sit there. Sugbrendas, I too am finding that mine can be onesided on great days. I have full body problems with most of my symptoms, but am trying to control that. My head itches so bad sometimes that I've injure myself trying to find the itch.
I hope both of you keep us updated.
wantoscream glad you found us.

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

Well,I just want to scream because I have RLS! : :o
Just a little humor amidst us..

I just had the butt jump on the right side(yesterday). It's always been on the left butt.

I have gotten progressively worse on these antidepressants and i'm really beginning to believe they may have something to do with it.
I know i've had RLS over 30 years but I feel like it's extreme.
The Neurologist that diagnosed me said" It's progressive but not debilitating". I BEG TO DIFFER :!: :!:
Finally able to sleep on average 9 hours a night!
Brenda

Guest

Post by Guest »

Sugbrendas wrote:
"The Neurologist that diagnosed me said" It's progressive but not debilitating". I BEG TO DIFFER"

Yeah, I call bullshit on that one too! Sleep deprivation is incredibly debilitating, affecting all areas of our lives. I can't begin to imagine having pain along with it to deal with. Best,

Heron

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

Heron,I thought it and you said it exactly.No one with this thing should ever be told that this thing that took over our bodies isn't debillitating. I can not imagine anything worse thats a forever thing than this..GOing without sleep is like being in combat,it's true..A long time ago I read (before puters)that theres a chemical in the urine for high stress combat and for sleep deprivation.I can't remember what the chemical is cause it was like 20+ years ago..I feel so sorry for all of us. :cry:
Finally able to sleep on average 9 hours a night!
Brenda

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

NOT DEBILITATING? HA!

Post by jan3213 »

Hi, it's Jan

Well.......... All I have to say is, after walking the floor night after night, not being able to sleep (I'm sure THAT sounds familiar?), there were times when I would be unable to remember where I had parked my car the next day and actually think that it had been stolen. Or, how about this--falling asleep at the wheel of the car while driving. I think THAT might be a little "debilitating". Not getting enough sleep (which is a direct result of RLS, often even if you are on meds) can affect your immune system, not to mention your mental health. It affects your WHOLE LIFE. I think that's a little debilitating, don't you? And, as you mention, there's the pain, a special little gift. I guess it's like anything else, unless (please pardon the pun) "you've walked a mile in my shoes" most people just don't understand. What worries me, is some of those people are medical professionals! That's disturbing! This is 2004, for Pete's sake!

Jan
No one is alone who had friends.

sugbrendas
Posts: 234
Joined: Thu Aug 05, 2004 7:28 pm
Location: Balto.
Contact:

Post by sugbrendas »

I totally agree Jan.
How many times have I drove 20 or so miles and not remember getting there?? Too many to count..Then I panic.
You know what it's going to take is some scientist getting RLS,PLMD and publishing it and it hitting CNN.
Finally able to sleep on average 9 hours a night!
Brenda

nephriticus
Posts: 88
Joined: Sun Aug 22, 2004 5:02 am
Location: Sequim, WA

Memory lapses

Post by nephriticus »

How many times have I drove 20 or so miles and not remember getting there??


Sugbrendas !

Is that due to RLS or CRS? :D

Neph

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Ha!! Ha!!

Post by jan3213 »

Hey, Neph! It's Jan

Hey, Haven't talked to you lately. Soooooo glad you've shortened your name!!! I like it!!!!!!!!!!!!

Anyway, in MY case it could be BOTH!!!!! Probably more CRS!!!!

Good one!!

Jan
No one is alone who had friends.

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