IS THERE LIGHT AT THE END OF THE TUNNEL?

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
jumpyowl
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IS THERE LIGHT AT THE END OF THE TUNNEL?

Post by jumpyowl »

This thread is started for Claradragon who started to post in my thread (self-diagnosed).

In her latest post she wrote:
Posted: Wed Jul 21, 2004 11:13 am Post subject:

Hi jumpy, as i explained in my first posting i really am new to this i have joined the internet only a week ago so even switching the pc on is still an accomplishment!!! fumbling blindly has it's advantages...it occupies the mind but it doesn't help with complicated projects i have revisited my doc today and insisted he treats me for this and amazingly (enough although he knows very little about rls ) he is willing and very keen to find out more! he's sending me for full blood tests (which i have tomorrow)contacting a specialist(who is fortunatly based at the hospital 5mins walk away )and referring me to a neurologist currently i am taking zopiclone 7.5 for sleep,mefenamic acid 500mg for period pain and codeine based painkillers when necessary,these are to be reviewed once he's consulted the specialist. feeling very positive and knowing it's not in my head has helped enormously with assertiveness my partner on the other hand...well maybe someday she'll pull her head out of the sand !:xas for being easy to live with...that i am not subconciously my life has been geared around having rls and if anything upsets the routine stress sets in and you all know where that road goes i can have rls attacks for 12 hrs and more do others ...attacks of pain can last indefinately even with painkillers (i only use codeine based not nsaid)surely there is light at the end of the tunnel


In response to my post to her (I was late with my offer):

Posted: Wed Jul 21, 2004 8:49 am Post subject: Hello, Clara!

If you want to share the stuff you are taking with you to the doctor, I may help you to document it better. You could reach me by e-mail if you want to preserve your privacy.



I was prescibed phenergan and found that my rls rapidly worsened
.


Phenergan (promethazine hydrochloride, an anti-emetic) is a troublesome medication. Interacts with many other medications and is too readily prescribed IMHO.

You need perhaps to be more assertive in your life. It must be a tremendous load being surrounded by unsympathetic people! Your relatives and family are hard to change but what about your significant other? Once he is starting to be part of the problem instead of the solution...? But to be fair, it is not easy to live with an RLS person, either.

You are right. Lack of sleep is one of the major morbidity of RLS. Then you can work on lack of quality sleep (increased stage 3 and 4).

Read some more, then ask! Also consider my offer (top sentence). We are ready to help you!
_________________
JumpyOwl


My comment will be in the next post. Yes, Carla, there is light at the end of the tunnel.
Jumpy Owl

Guest

help i am getting confused

Post by Guest »

hello jumpyowl the doc said no way to ambeian but gave me sonata any info on this med would be helpful thanks heeps lyndarae

jumpyowl
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Post by jumpyowl »

I already did in your thread.
Jumpy Owl

claradragon
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Post by claradragon »

thankyou jumpy...i have to admit this is all very daunting for me and i wish i could express myself as eloquently(spelling?)as yourself :shock: to add to my visit to my doc earlier he called a little while ago to explain he was referring me to a sleep centre in london,he's been talking to an rls specialist to gain more info on treatment...at least i feel he's trying to help me now :lol: i know there is light at the end of the tunnel but it's so long since i've seen it that sometimes it's hard to believe it's still there :cry: x

claradragon
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Post by claradragon »

well i visited my new physio today for an assessment on a back injury i did at work.tired to explain that i have rls and guess what i got...yeah you know :shock: :roll: that blank face!said i would go back in 2 weeks with info cos she's fascinated!found a pamphlet in the waiting room for parents about "growing pains " and nearly flipped there and then when i read that if it's not arthritis it usually goes away and not to wory about it :evil: wanted to rant and rave not to dismiss these children as sometimes it doesn't go away it just gets worse and they can't get the help they need because docs sometimes just can't listen :? sorry rant over now...just needed to vent that one :wink:

jumpyowl
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Hello, Clara!

Post by jumpyowl »

Thanks for the compliment. I did not know I was eloquent (au contraire). Perhaps because English is the fifth language I studied (after Hungarian, Latin, German, and Russian) I have to watch what I write. :oops:

You wrote:

found a pamphlet in the waiting room for parents about "growing pains " and nearly flipped there and then when i read that if it's not arthritis it usually goes away and not to wory about it wanted to rant and rave not to dismiss these children as sometimes it doesn't go away it just gets worse and they can't get the help they need because docs sometimes just can't listen


It does make one mad, does it not?
Last edited by jumpyowl on Sat Jul 24, 2004 6:22 pm, edited 1 time in total.
Jumpy Owl

claradragon
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Post by claradragon »

mad!...i was jumping :P !
i have to say, dear sir jumpyowl, you quite the most impressive individual!are there no limits to your intellect :?:

claradragon
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Post by claradragon »

the more i learn about rls makes me realise how much of profound effect it has had on my life...so many symptoms and never connecting them!the occasional good day was enough to convince myself i needed to get a grip not realising what i needed was diagnosis and treatment :roll:
discovered one of the girls i work with also suffers from rls off and on,she was so happy she was not the only one but not happy she wasn't the only one...this isn't something you wish on your worst enemy!unfortunately she has no internet access so is not able to freely access information :( trying to help but feel useless at the mo being unable to learn quick enough how this computer thing works :shock: trying my best to keep plugging at it but concentration often flags before the will and land up forgetting half of what i've leaned because i wasn't paying attention properly(trying to run before i can walk doen't help!)
been taking zopiclone for sleep but finding my head the next day takes a good 6 hrs,anybody got info on it please :?:

claradragon
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Post by claradragon »

:arrow:

claradragon
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Post by claradragon »

well i've been taking the zopiclone and it's NOT GOOD! :shock:

when i take them i still wake up with the crawlies all over about an hour after going to sleep...then i'm up and pacing for a couple of hours...go back to sleep for about four hours(that's good for me!)...then i wake up and i lose the plot! :x

doesn't calm my rls...didn't get good sleep and it sent me slightly off my trolley! :evil:

conclusion...won't be taking them again!

oh well back to the doc tomorrow...problem is the one i made a breakthrough with has had to go back to india to his family so i'm gonna be starting with a new one! :roll:

sardsy75
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Big (((((HUGGLES)))) for Clara

Post by sardsy75 »

Hi Clara

You're certainly having a rough trot at the mo' aren't you, you poor thing! You have my sympathies, and i'm sending lots of positive thoughts and BIG (((((HUGGLES))))) your way to help keep you going.

I know what it's like to start down what seems to be the right path only to come to a dead-end and have to turn around and start all over again. It's not fun, but don't let it beat you ... you can beat IT!!

Now, for some serious stuff ... Stop Stressing!!!! Stress only makes our "friend" more active, and the more you stress, the more you will wear away the floorboards at night.

Also, if you're addicted to that stuff called coffee...start weaning yourself off the stuff as caffeine is a major trigger of RLS (as is chocolate, which also contains caffeine!); and if you're more than just a social drinker, cut back on the alcohol too.

OK, the lecture's over for now 8)

I'm not sure how much digging you've done around this site, but i'm going to point you in the direction of an excellent webpage which teaches you ways to combat the ol creepie crawlies, gotta wriggles, gotta stretches, etc, etc, when the drugs just ain't doin it for ya :wink: It's the RLS Rebel Page at http://www.rlsrebel.com

The more you think about your RLS, the worse it will get, and the more stressed you will get. It's a kind of "mind over matter" thing, but with a much more serious side! Do you have any hobbies that you can do while you're up and about during the night, like reading, drawing, painting, scrapbooking, knitting, etc, etc. The more you take your mind off your legs, the quicker they will settle (trust me, i've tried it!!).

A good old fashioned massage is good too. Now, this will probably sound quite funny to most, but hey, it works ... if i'm wriggling too much in bed and manage to disturb my dear hubby enough to wake him, OR if i'm just having one of "those" days, he simply starts gently massaging my head. Sounds too simple, huh? Believe me, it can settle me down within 15-20mins on my worst days/nights. So, if you have a partner, hubby, family member or just a good friend who is kind enough to help you out, by all means give it a go.

Well, i think i've rattled on enough for now (as usual!).

Clara, take it one step at a time, one day at a time, and most importantly, Stay Positive!!! You can beat this! We're all here with you!

Take care of you :)
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!!!

sardsy75
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RE: Zopiclone

Post by sardsy75 »

claradragon wrote:been taking zopiclone for sleep but finding my head the next day takes a good 6 hrs,anybody got info on it please :?:


I looked up zopiclone in my trusty medication guide and found the following information:

Drug Class: Sedative/Hypnotic

Uses: Insomnia (Sleeplessness)

Side Effects:
Common - drowsiness, headache, fatigue, taste disturbances, dry mouth
Unusual - dependency on medication

Interations:
Other Drugs - other sedatives
Other Substances - reacts with alcohol to increase sedation

Clara, this drug is designed for short term use only. How long have you been taking it and at what dosage level?? (Jumpy, you and your knowledge might come in handy here!).

Is this the only drug you are taking? If so, by the sound of it, you may need to start looking at another treatment regime, or compliment the zopiclone with something else as it is obviously not doing the job by itself. If not, what else have you tried, and what dosages? The more you tell us, the more we might be able to help out.

Below are a couple of links to sites containing information on the various treatments available for RLS. You might want to print them out and take them to your new doctor if he/she is unsure of a place to start, so to speak :?

http://www.jmjudson.com/medications.html
http://www.rlshelp.org/rlsrx.htm

The next link is to the RLS Foundation 2004 Medical Bulletin. This would also be handy for your new doctor (and even your physio!) to read.

http://beta.restlesslegs.org/pdf/2004_m ... lletin.pdf

Hope this helps you out!

Take care of you!
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!!!

jumpyowl
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Zopidone

Post by jumpyowl »

Hello, Clara:

I am sorry I missed out on your plea until I received a a "gentle" nudge from Nadia. Next time when I do not reply within a day, feel free to send me an e-mail: fjholly@dry-eye-imstitute.org

Now if you could, please let me know all the medication you at present are taking. Just the name will be enough. You can send it privately or through my e-mail (preferable) if you wish to maintain privacy. 8)

On a personal note; during my adventurous youth (prior to 34 years of age) I had a number of close Indian friends (all male). They were nice and intensely emotional but in their relationship with women most of them were a pain (in the patoot). Toward their girlfriends, I mean. They had the weirdest complexes probably acquired in their childhood and also the conflict with the American values which in themselves were rapidly changing. The important thing is that they could rarely produce an emotionally stable relationships with women and very little of it was bliss.

So try to delay the acquirement of another emotional burden at least until you get your RLS under control. Now this is your older brother talking. :oops: So please do not take offense.

So do not forget to reply with your medication so I can give you some ideas to discuss it with your doctor. Unless it is too late for this appointment..
Jumpy Owl

jan3213
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Hang in there!!!

Post by jan3213 »

Clara--This is Jan. Remember--There are no stupid questions? It's been quite a while since I've "talked" to you. It sounds like you're having a horrible time. I couldn't help but post a note to you to let you know I'm sending good thoughts to you!! I've been where you are now and know how you are feeling!! I'm so sorry you're going through this!!! There were times I'm surprised I wasn't on top of my office buiding with a machine gun after walking the floor all night long!!! Nadia has some great ideas. I've tried them myself--my husband has massaged my head. He's even massaged my legs in the middle of the night. I've taken a hot shower a 3 a.m. I would do anything to try to get my mind off my legs!! I can tell you what's on T.V. at 4 a.m. Sometimes that really helps!! Sometimes not. Nadia's also right about caffein, chocolate, and I find that eating too much sugar is a trigger for my RLS. I don't know anyone personally who has RLS, so I couldn't talk to anyone here where I live about it. So, I'm really glad I found this site. Like I said one time, it's not cancer, it's not terminal, but it's AWFUL, and, you're right, I wouldn't wish it on MY worst enemy either!! I hope you find a good doctor who will listen like I did. I wish you the VERY BEST!!! And I hope VERY SOON that you'll be enjoying some GOOD REST!!!

All the best!!

Jan

claradragon
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thanks everbody

Post by claradragon »

Thanks for your big hugs, support and advice.Much appreciated :D

Firstly...i got my appointment wrong, it's next week! :oops:

I think it was becat who said "one doc at a time" excellent thought! :wink:

I am currently taking zopiclone 7.5 one before sleep

The first week i took it for two nights only and although i realised they were making me groggy i didn't realise they were responsible for making me so grouchy! I took them again five days later for three nights and once again i was groggy and had major grouchiness resulting on the third day waking up in psychotic demented troll mode! :evil:
The times that i did take them i found no relief from pain and parathesia but i did manage to grab three to four hours sleep.

I also take otc codeine based painkillers as needed (usually about an hour before bed as i try not to take any at all) but as i am unsure of drug interactions i did not take any on the nights i took zopiclone.

I don't drink coffee at all purely because i don't like it and i don't have much of a sweet tooth so chocolate is a rare craving thankfully!Alcohol i quit a couple of years ago

My symptoms

parathesia in both legs and arms more so on the left side
parathesia in the left side of my torso
constant pain in my left arm and leg ranging from a dull ache to raging throb
pins and needles in hands and feet
numbness
insomnia
sensitivities
cramp
nausea
fatigue
i can remember having parathesia as young as six

Thanks for the links...very informative :)

As for stress, it is quite high as my relationship with my partner appears to be drawing to a close. :cry:

once again thanks everybody :)
Last edited by claradragon on Tue Aug 24, 2004 5:04 pm, edited 1 time in total.
My bio is on pg1/new to rls/new members and current members please help.My diary is under new to rls/is there light at the end of the tunnel?

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