Hello.....am still here

For everything and anything else not covered in the other WED/RLS sections.
moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

Hello.....am still here

Postby moonlight » Wed Jan 09, 2013 7:52 pm

Hi everyone, I just wanted to say hello and let you know I'm still around

As for the rls/wed it's still around too...had to come off the codeine as it was making my tinnitus worse, which I find more unbearable than the rls /wed at night, in the quiet which I never hear, and during the day I hear it above everything.

Am not starting any other meds as most are oxotoxic and so make the tinnitus worse, I can only just cope with it.

So I do a lot of walking at night and crying in bed, and when the trapped nerve pain and rls kick in together ,I think my world is ending but obviously not as I'm still here.

At the moment I find a hot water bottle burning my legs gives some relief, but can't take a hot bath as it makes it worse...weird eh? also I physically can't get into/out of a bath anymore.

Am spending a lot of time drawing and painting and loving it also go to three music groups , one of which we play as a band and do gigs, so life has its good side too.also getting loads of support and proper help three times a week for my mental illness at the day hospital so life is good.

I hope everyone is doing good

moonlight
sleep is not only a dream

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Hello.....am still here

Postby rthom » Wed Jan 09, 2013 8:07 pm

Moonlight--sorry to hear it's tht bad. The ear ting is aweful--ps don't mix the codine with nyquill it's much worse if you do that. I also cannot use codine for the same reason, however I can use oxycocet and hydromorph without any trouble (unless i take large amounts--then i think it's the accedimenophine in it) for example--Just a though for you. Hope it helps.

moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

Re: Hello.....am still here

Postby moonlight » Wed Jan 09, 2013 8:19 pm

Hi there, sorry to hear your plagued with the tinnitus too. I don't know of the meds your talking about , maybe in UK their under a different name, mind you now if theres any possible tinnitus side effect I steer well clear.

I can't stay longer on the computer as the rls is giving it laldy just now.....hopefully it wont bother me later.

take care
moonlight
sleep is not only a dream

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Hello.....am still here

Postby rthom » Wed Jan 09, 2013 8:45 pm

Anybody know where to find the names of eds in different countries, eg. what the name of hydromopph might be in uk?

ViewsAskew
Moderator
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Location: Los Angeles

Re: Hello.....am still here

Postby ViewsAskew » Wed Jan 09, 2013 8:52 pm

Just have to do a Google (or similar) search on the name. Wikipedia usually has the names in different countries, too.
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.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Hello.....am still here

Postby rthom » Wed Jan 09, 2013 10:13 pm

Oxycodone is an analgesic medication synthesized from poppy-derived thebaine,

moonlight
Posts: 672
Joined: Fri Nov 02, 2007 12:35 pm
Location: scotland

Re: Hello.....am still here

Postby moonlight » Thu Jan 10, 2013 4:03 pm

Have just checked up on what its called here OxyNorm and tinnitus and deafness are a possible side effect so its a nono for me .
I shall persevere with nothing...am I crazy or what!...but with the present level of tinnitus and hearing loss I have it is a must.
sleep is not only a dream

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Hello.....am still here

Postby rthom » Thu Jan 10, 2013 4:19 pm

sorry to hear that, was hoping for something better for you.

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Hello.....am still here

Postby rthom » Thu Jan 10, 2013 4:23 pm

Goes to show how different peoples bodies are. I had horrible tinnitus on codine--could not hear what people were saying to me and thought at some times if I had to stay that way, death would be better. But these don't affect me that way unles I take alot--more than the script---weird eh? I'm thankful for the change in me--was hoping it could be the same for you. We will keep you in mind here--if I hear anything else I'll drop a note. Have a good day

badnights
Moderator
Posts: 5241
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Hello.....am still here

Postby badnights » Mon Jan 21, 2013 4:09 am

poor moonlight! But I'm glad you have your music groups and that you're painting. Anything that gets the mind off things for a while is something that lets us carry on that much longer in spite of things.

the other drug rthom mentioned is hydromorphone. That's the generic name. It might have a brand name like Palladone or Dilaudid. It would be wonderful if ONE of those opioid drugs DIDN'T cause tinnitus....!
Beth - Wishing you a restful sleep tonight
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Hello.....am still here

Postby Betty/WV » Tue Jan 22, 2013 2:46 pm

Hi everyone: I'm still around too. Just haven't been on for a while. WED/RLS is better but everything else is worse. Its great moonlight that you have your music groups and painting to distract you. I am becoming a hermit. I don't want to go out anymore orreally do anything. Sometimes I stay in my nightgown all day. Arthritis is very bad and so is the fibromyalgia, even though at times I don't know which one is acting up, maybe both.
And my weight is going up,up, and up. Another reason I hate to go out. I have so many things wrong and take so much medicine, and that makes me sleep a lot during the day but at night I don't sleep well. I am also just about fed up with doctors also. I go and they never seem to solve anything. Here I am, venting, which seems to be what I do best. I wish I wasn't always so negative. But this is the only place I can vent. No one else listens or undersands

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

Polar Bear
Moderator
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Hello.....am still here

Postby Polar Bear » Tue Jan 22, 2013 7:09 pm

Betty.... you don't sound so good these days, and it's so hard to know what is fibro and what is arthritis. And then with the poor sleep your days and nights get all turned around.

Do you have any friends or family who call to visit, have a chat.
I wish we all lived so much nearer to each other.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Hello.....am still here

Postby Betty/WV » Tue Jan 22, 2013 7:56 pm

yes, PB, I need some friends close by, like the ones here at RLS.org. I'm in a real funky mood and have been for a while. I have to try to get out of it. If I try to tell anyone what is going on with me, they just don't understand. So, I don't say much. I need to post more on the discussion board. It does help to read posts from people who care and understand. Thank you, so much.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Hello.....am still here

Postby rthom » Tue Jan 22, 2013 8:04 pm

Betty have you seen someone that can check for and diagnose the fibro? It has meds that can help--neurontin, gabapentn--any chance these might help you with the WED and fibro?
Just a thought. Hope things go better soon--we are al here for you.

Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Re: Hello.....am still here

Postby Betty/WV » Tue Jan 22, 2013 8:42 pm

Thanks rthom: Yes, I have been diagnosed with fibro, many years ago, in fact. I took neurontin for a long time but it didn't help much. I am now taking Mirapex for the WED/RLS and it helps with the RLS but doesn't help with the sleep. In fact, if you read the paper that comes with the med., one of the side effects of Mirapex is insomnia. Isn't that a kick in the head? At least I can lay down and rest without walking the floor all night. A tylenol artheritis pain, helps as good as anything. I take to much medicine anyway.

Something else I would like to comment on. I was having problems with falling asleeep while driving. Very scarey, I didn't drive for almost a year because I had a bad experience. But there is a device you can get, it fits on your ear and if you nod it lets off a big beep that would wake you up. I got one from Amazon.com. They have several different ones at different prices, I suggest you get one of the more pricey ones. Not the real cheap ones. I've tried it out at home and it works. The one I have is called Nod Alert. Just thought maybe this would help someone. I may order the $29 one, mine cost about $10.

Thanks friends.

BETTY/WV
Thanks to rls.org, I have learned so much about my condition. I have received encouragement from my friends here. This is a site I can come to when I am up most of the night, and I vent, and know those who read my messages understand


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