No urge to walk?

For everything and anything else not covered in the other WED/RLS sections.
adidasngh

No urge to walk?

Postby adidasngh » Tue Aug 03, 2004 2:16 pm

Hi. I'm new to RLS - I've suffer with chronic leg pains at least once a week and it always comes on at night when I'm getting ready to go to sleep. However, I do not get the urge to walk. Or at least, I've always felt like if I am really still and use a heating pad, that usually makes the symptoms go away. It almost seems to hurt worse if I walk around. Would this still be considered RLS?

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Rubyslipper
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Postby Rubyslipper » Wed Aug 04, 2004 1:18 am

The only constant that I see with RLS is the need to move. Some have pain, some don't. The symptoms vary so much, the meds used are so different from one to another and that's just the major differences. RLS stands for Restless Leg Syndrome and some of us have other body areas that HAVE to move. The lucky ones of us can sleep most of the night but I am a firm believer that many times our legs move even when we don't think they do. This has shown up in sleep studies. You need to get in with a good doctor to check out your symptoms. It could be the early stages of RLS or it could very well be something else entirely. Hang in there and keep us posted on your journey.

jumpyowl
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Wee-e-e-ll?!

Postby jumpyowl » Wed Aug 04, 2004 1:33 am

You wrote:

Hi. I'm new to RLS - I've suffer with chronic leg pains at least once a week and it always comes on at night when I'm getting ready to go to sleep. However, I do not get the urge to walk. Or at least, I've always felt like if I am really still and use a heating pad, that usually makes the symptoms go away. It almost seems to hurt worse if I walk around. Would this still be considered RLS?


You are right, you are missing three or possibly four important symptoms. (1)You do not have the urge to move your leg and (2) your pain goes away with heat and not with motion. (3) you do not have paresthesia only pain. (4) your typical symptoms are nonexistent and I assume pain is not circadian in nature.

Well, missing 4 out of 4 characteristic symptoms characteristic to RLS is rather definite is it not? You do not seem to have RLS in MHO.

A pain doctor should track your pain down and treat it properly. Do you have a problem getting sufficient and the right type of sleep? If so, have you had a sleep test?
Jumpy Owl

Little Lamb
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Postby Little Lamb » Wed Aug 04, 2004 1:42 am

Speaking of the urge not to walk, when my legs start to move or twitch, I really don't do anything about it. I put up with it. The reason for this is because I hate to stand! I want to be off my feet. I really don't have a severe case or rls. At least not now.

A couple of years ago, it was a little worse. I would have to walk whether I liked it or not, just so it wouldn't happen.

Hopefully this is because of low iron. I sympathise with you all who have it worse than me.

sugbrendas
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Hi,i'm new here and VERY happy for a support group!

Postby sugbrendas » Thu Aug 05, 2004 7:53 pm

I'd like to give a brief history.I began having problems with sleep about 25 years ago. My GP tried all kinds of different pills,alot were antidepressants.None worked til Imipramine.I slept fine with it for about 10 years then the Imipramine gave me high blood pressure.After alot of other drugs that didn't work(including Halcion) he put me on Klonopin which worked good but I was afraid of getting addicted so I would go off of it and they would give me Resteril for a couple of weeks.(they actually preferred the klonopin)so anyway on the Resteril I woke with my legs jerking in mid air. Finally I went to see Neuro but by then my legs were active all day and night as well as my arms and even my butt.Neuro quickly gave me a long needed diagnoses.However it was pretty advanced by this time.,I'm on 2-3 mg Klonopin,1 25mg Elavil(the combo is "pretty good".) I'm at the point now where i'm getting active in my sleep again so it must be the RLS.my dh says i've been pretty aggressive here lately..So whats left? Do we ever really get stablized and enjoy that precious much needed dream sleep. I'm sorry,i'm just so tired and so tired of this understated,underrecognized condition.
In the past couple of years they had me try all of the Parkinson meds,last one was Requip,I was a mess.The very last trial was Neurontin,still no luck there either.
Anyone here been there? TIA

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Rubyslipper
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Postby Rubyslipper » Fri Aug 06, 2004 10:56 pm

I really hate to tell you this. For many, many of us the meds we are on do not work forever for us. Augmentation may cause us to quit use or they may just stop working. Most of us have become our own guinea pigs because what works for one won't for another. Some meds have a rebound effect and sometimes we have to take a complete vacation from drugs for awhile in order for them to work again later. Jumpyowl is a great source of information and you need to get all the info you can from this site as well as other reliable sources.

jumpyowl
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Welcome sugbrendas!

Postby jumpyowl » Sat Aug 07, 2004 11:25 pm

You wrote:


My GP tried all kinds of different pills,alot were antidepressants.None worked.


No wonder, antidepressants are know to aggravate the symptoms of RLS.

Imipramine worked. I slept fine with it for about 10 years then the Imipramine gave me high blood pressure.

Imipramine is similar to Elavil. It is also a tricyclic antidepressant. I am surprised it worked. Especially because one of the side effects is paresthesia (!) and it causes orthostatic hypotension rather than hypertension.

After a lot of other drugs that didn't work(including Halcion) [color=red](vow!) he put me on Klonopin which worked good but I was afraid of getting addicted so I would go off of it and they would give me Restoril for a couple of weeks.(they actually preferred the klonopin) so anyway on the Restoril I woke with my legs jerking in mid air.

Finally I went to see Neuro but by then my legs were active all day and night as well as my arms and even my butt.Neuro quickly gave me a long needed diagnoses.
What was the diagnosis?]

However it was pretty advanced by this time.,I'm on 2-3 mg Klonopin, 1 25mg Elavil (the combo is "pretty good".)
If this combo is pretty good you probably do not have a primary RLS.

I'm at the point now where I 'm getting active in my sleep again so it must be the RLS. my dh says i've been pretty aggressive here lately..So whats left?

What is left? My dear lady, you have not been treated as yet for RLS!!!! Except in the last two years. Since you did not go into details there yet, I cannot tell how haphazard your treatment plan was even there.

In the past eight years you have been mainly treated for depression (probably secondary to RLS) and also received the sedative, Klonopin.


How come your neuro tried dopamine agonists, the main treatment fo RLS, as a last resort. How about a sleep study???

In the past couple of years they had me try all of the Parkinson meds,last one was Requip, I was a mess.

Could you give us some details here. I agree with you on the Neurontin. But what side effects have you had?


I am not sure at all that you have simple RLS. At the least you either have a refractory RLS or PLMD (periodic leg movement disorder). I am surprised no one ordered a polysomnographic study on you.

Clearly for the majority of the time you were on the wrong medication unles you had something else but RLS. Your diagnosis appears to be on shaky grounds.

Please read the thread on the open forum on the algorithm for the management of RLS.

Someone should do a systematic workup on your affliction whatever it is.
Jumpy Owl

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Postby Guest » Sun Aug 08, 2004 3:00 pm

Testing here,

claradragon
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Re: Welcome sugbrendas!

Postby claradragon » Sun Aug 08, 2004 3:22 pm

jumpyowl wrote:Please read the thread on the open forum on the algorithm for the management of RLS.


hi this is the link to the algorithim

http://www.mayo.edu/proceedings/2004/jul/7907crc.pdf

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Postby Guest » Sun Aug 08, 2004 3:39 pm

I wrote a long post last night and it got deleted.
I just figured out i'm not supposed to sign in again.I get signed in automatically.

Anyway thanks Rubyslipper and jumpyowl.

I can't do the quote thing but I can try to answer what I can.

The neurologists(3) put me on the antidepressants,said it helps with RLS.
No h/o of depression unless I go long periods without sleep then it's like super pmsing..Elavil and Imipramine can help block pain and movement.
As a retired nurse I used to work on Rehab and they used it often with amputee's and nerve compression in the back..In the beginning Elavil did nothing,together with the Klonopin it helps.
I don't know why Imipramine gave me hypertension.I've always had low BP..I'm guessing something to do with the long time I was on it.
I do have problems with orthostatic hypotension..I'm 50 years old.

It's interesting jumpyowl that you said I need a sleep study.This last neurologist said I needed one but my insurance refused to pay.

I was diagnosed in 94,I had to travel 2 hours to CHevy Chase Md. to see this "super doc".All she really did was give me a very long questionare,I did a diary and she had me record myself at night to r/o out apnea.
She wrote it down."RLS,day and night involuntary movements of the legs and arms."She said it's advanced and will continue to advance but it's not debilitating.(I disagree that it's not debilitating)

Over the past couple of years neuro tried the Parkinson's meds.I was at a place where my med regiment wasn't working..
I was on 3 at different times.The first(l-dopa) knocked me out very quickly,like within a half hour.I would wake up after a couple of hours soaked.I would get up and put a fan on me,even my knees were sweating and then I was up the rest of the night.
The 2nd I can't remember the name(wish I had kept a diary) didn't put me to sleep and then when I was trying to sleep I didn't dream,I heard everything around me like being semi-conscious.
The 3rd Requip was the same as #2..They all effected me sexually.

So thats when neuro said lets try the Elavil with the Klonopin.
When she requested the sleep study it said r/o parasomnia(sp?)

I now am wondering what the heck is wrong with me.DH says i'm very active again. I manuver HIS arms like i'm trying to accomplish something.
My arms can often be found in the air for no reason for long periods.
A few years ago dh put my arm down and I smacked him and left my hand print.Now he just lays there and lets me finish whatever it is i'm doing.Except when I tried to throw my dog recently.It scared me half to death and I woke up with that one,I usually don't become awake when i'm busy.

I woke up with my hands around my little cocker's butt,I was grunting and working very hard to throw her but she was digging her paws into the bed.
It scared me half to death.She's a quiet sleeper,I can't understand why I did that.

My legs and arms and butt are restless,especially in the pm.but can be like that anytime I sit and relax. It comes in different ways. Sometimes it's a repeated quick twitch,some my whole leg moves and sometimes it doesn't. Sometimes it's like something is crawing up my leg from the inside.I don't have pain.
I sometimes get those leg cramps I call charlie horses but I don't associate them with RLS.s

I will check out the meds section of this site.I'm so happy to have found it.

thanks for trying to lead me in the right direction

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Postby Guest » Sun Aug 08, 2004 6:16 pm

I actually have that article,my daughter (a CMA) bought it home and I read it.
Over all what I got out of it was sometimes some antidepressants can cause adverse reactions.Klonopin is to be used in some cases but not others.
Alot of what meds to give seems to be around if you have the RLS all the time,in my case anytime I relax whether it's in the am or pm I have it.

Funny about the Tramadol aka Ultram without the tylenol that Ultram has.
I had to take Ultram for awhile due to severe muscle weakness and pain from a flu shot which lasted for months,I couldn't lift my arms or legs. I was finally diagnosed the following year after my flu shot and my symptoms reappeared to a lesser degree.

ANYWAY the best sleep I can remember in along time was when I was on Ultram.....hmmmm

Brenda

jumpyowl
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Postby jumpyowl » Sun Aug 08, 2004 7:23 pm

Hello Brenda: I assume it was you posting under the name guest which is the default. It helps if you put your handle or name, when you post.

You wrote:
Funny about the Tramadol aka Ultram without the tylenol that Ultram has.


I think you mistake Hydrocodone with Ultram. The latter has no acetaminophen in it. A little more info:

Ultram is a new synthetic medication for pain relief and is not chemically related to the opiates, like all the above medication in this class. It works on the central nervous system by two different mechanisms. First of all it is a weak opioid inhibitor as it binds to the mu receptor. It also works by blocking the reuptake of two different neurotransmitters in the brain, norepinephrine and serotonin. Ultram is metabolized to another compound which actually is more potent than the original tramadol in helping to block pain. The drug does not appear to be as addictive as others in this class of RLS medications, but cases of addiction have occurred. Special care should be taken in patients with a history of addiction to opiates, as they may be more susceptible to addiction with Ultram.

This drug can be very effective for treating RLS and many RLS sufferers have gotten excellent relief from the intermittent use of this drug. Some patients have used Ultram for drug holidays from the other pain killers above (in the narcotic family). This seems to have been very helpful for many, and no cross tolerance has developed. This information however, is only anecdotal, and is not proven yet in a clinical study or trial.


I also heard good things about Ultram (tramadole hydrochloride). I hope next time I get a script for it then I can report from my own personal experience.

Antidepressants cause problems with RLS much of the time except for two.
It appears that your neurologist is wrong about this. However, it is a fairly common mistake.

The four major types of medication for RLS are:

1. dopamine agonists 2. sedatives (klonopin among them) 3. anticonvulsives 4. and pain medications.

I is interesting that you received no help from the dopamine agonists. Mirapex is supposed to help 80% of RLS patients.

It is always a possibility that you have something else along with RLS.

Motion subsides the sensation. That is typically RLS. Your sensations could be somewhat different. Like your violent limb motions.

Have you had your ferritin levels checked? Magnesium?

Polysomnography can be very useful in cases like yours. No wonder your neuro also suggested it.
Jumpy Owl

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Postby Guest » Sun Aug 08, 2004 10:35 pm

Thanks jumpyowl,I did not know to do a profile til I looked and it said guest.
Thanks for clearing up the Ultram misinformation.Geez I hate that when you hear the wrong stuff from professionals.
Yes I believe the Ultram helped but I forget what dose the article said,i'm sure it's more than the 50..Ironically the Dr.said I had to stop taking the Ultram after a month b/c taking it with Elavil can cause siezures.Now with more info it looks like I should have kept the Ultram and got rid of the Elavil...My DOc only wrote for 30 of the Ultram,seems he thinks it's a drug that can be addicting.The directions said 1 every 4-6 hours for pain.

You know I was so not wanting to begin the Klonopin and was told I didn't have a choice,I didn't want to be one of those labeled "drug seekers".
Neuro back then said "they won't do that you have a real disease that requires you to take it." But I think as time goes by and with the turnover in Primary's and alot of my medical record is missing they see Klonopin,Elavil and I know they see depression/anxiety. If your iron isn't low and most aren't and theres not a real conclusive test to prove it.
I was tested for Iron and Magnesium and Syph.,and Lymes..They did 3 nerve conduction studies,found I have polyneuropathy in my legs/feet,cause unknown..The Elavil stopped the burning which I had become used to.
btw, Mirapex was the 2nd drug I forgot,when I saw it I recognized it.
I want to address this sleep study with my primary this week.

thanks,
Brenda

Guest

Postby Guest » Sun Aug 08, 2004 10:38 pm

ok,i'm still listed as guest.I put sugbrendas. I don't know what all of those codes are they ask for.
Sorry,
Brenda

Guest

Postby Guest » Sun Aug 08, 2004 11:39 pm

ok,I found a sample of "Ultracet" which the doc gave me before writting for generic Tramadol..1 caplet has 37.5 mg tramadol hcl and 325 acetaminophen.I guess that where I got the tylenol from.

Brenda


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