sleep issues

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
Betty/WV
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Post by Betty/WV »

Ann: I took neurontin for years. It got to the point where it wasn't doing anything and my doctor took me off it.

PB: Your description sounds just like me. I have severe pain in my feet especially my left one. Xrays show arthritis. And the vicious cycle sounds like me too. Stress, no sleep, pain, and on and on. My GP seems to think there is more going on with my feet than just arthritis. Although my feet are getting so deformed, hammer toe, bunions. He is sending me to a podiatrist, but my appt. isn't until the 22nd.

Now, I seem to be tired and sleepy all the time. I take a couple long naps a day. I feel like a baby who has his "days and nights mixed up". What worries me the most is I don't want to get dressed, I don't want to go out of the house. I don't want to see anyone. How in the world did I get like this.????

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
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Post by Polar Bear »

Betty,
Sometimes it seems as if we have been on a roller coaster that had a mind of its own, a mystery tour..... that ends up with..... what happened to me.

I'd be concerned about you not wanting to get dressed etc. etc. and feel that if our spirits are uplifted other things become not quite so black and a little easier to deal with.

Easy for me to say when Im having a better day..... and not so easy on a bad day.

It can take some motivation to get yourself to the doctor and say.... I am miserable, I feel depressed, I need help. Can we break this terrible rollercoaster circle!!

And who among us has not felt depressed.... it kind of goes with the territory of WED.

I'm thinking of you and wishing you good things, in particular a doctor
who will understand you.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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Betty/WV
Posts: 587
Joined: Mon Nov 29, 2004 11:11 pm
Location: West Virginia, Wild and Wonderful

Post by Betty/WV »

Thanks PB for your concern. Sometimes I think this is it. That there is no way out. Just more of the same and I hope not worse.

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
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Post by Polar Bear »

Betty, have you spoken with your doc about quality of life. Does she really 'get it' about how miserable you feel.
Betty
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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

Post by Betty/WV »

I have talked to my doctor about my depression and my consistant pain. He is trying to help me I think. He sends me to different specialists. Next I go to the podiatrist for the pain in my feet. I was on wellbutrin for pain and depression but it kept causing me to put on the pounds so he took me off it. I think, like you said, it is all a vicious cycle and doctors don't even understand it.

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

ViewsAskew
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Post by ViewsAskew »

it took me two years after my last doctor "fired me" because of the opioids for me to look for a new one.

I don't think doctors have ANY idea of what it's like for those of us with multiple issues to try and work through them all and get help for each of them. No one oversees it, no one "gets" the big picture and no one seems to work with anyone else.
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Post by Polar Bear »

I may be proved wrong but at the moment I feel that my GP is looking at the whole picture and I feel that what helped was that when I went to her (she wasn't the doc I normally went to) I took a Word Document with all my medical conditions information. She took time to read this which was great as it covered everything.

I saw her today following my appointment yesterday with the Rheumatologist and also took her a copy of the Mayo Clinic Algorithm which she thought was excellent and asked to keep. I also showed her Dr B's response saying to 'beware of amit....' and she was most interested.

To help with the fibro and the sleep she still wishes me to try the amitriptyline but has suggested we start low at only 10mg. (my cousin who has fibro takes 50mg). When I asked for a back up in case of it giving me a bad time she said that if this happens I should take an extra tramadol. She also gave me some more Diaz 5 mg for sleep as the amit... is starting at a low dose and I may still need a little help while it is gradually increased (hopefully, and without WED incident). But to try and not take the Diaz every night.

Last year this same doc had picked up that I had a touch of depression, and had given me citalopram. I had argued several times with her over this and refused to take it in case of a bad WED reaction but when one day she asked me how I was and I immediately dissolved into floods of tears we agreed that it was time to do something. The citalopram was started at the very low dose of 10mg and has stayed at this for 14 months. Today she suggested that I increase this to 20mg. Her reason being that for the past year I have been coping with Temporal Artritis, arthritis, fibromyalgia, gastric diffs and the WED. She says it is a lot to deal with and she would like to get me back onto a better quality of life.
We both know that so far the citalopram has been ok, and we will have to keep an eye on the increased dose and also the addition of the amit.....

Sorry this has been so long winded....... but I guess I'm making two points here: firstly, I am now taking two drugs that will help me but may have a bad affect on the WED and I am a wee bit concerned about this but willing to try it. secondly, perhaps the reason I am willing to try it is because GP is being so helpful and I believe is 'seeing the whole picture'.

Fingers crossed I do not have an adverse reaction with this amnitriptyline cos it will help my fibro and sleep.

And in the meantime, I wish all of you the hope and trust that I presently feel with my GP.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Post by ViewsAskew »

I am so happy for you, PB. And, if I had one wish, it would be that we all could find such a wonderful doctor.

I should have been less jaded and more clear. I think few doctors see it and we are lucky when we find one that does. Like you, I've been lucky to have had a doctor or two through the years that were able to do it...they are just few and far between.
Ann - Take what you need, leave the rest

Managing Your RLS

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Polar Bear
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Post by Polar Bear »

I think I've read that it will take the amitryiptyline up to a couple of months to be effective in helping the Fibromyalgia. However doc also gave it to me against my better judgement as it is an effective sleep aid.

I have been started on the low dose of 10mg so as to up it very gradually and try not to shock my WED into overaction.

However, when it comes to being a sleep aid I fancy that this side of it works pretty quickly because I have now taken it for 2 night. First night I slept 4 hours, no change there, but last night I got a magnificent 9.25 hours. Fingers crossed that this was not a fluke.

Its only been two days but I haven't any bad WED reaction. Does anyone know how long it takes for any adverse reaction to show itself. Would it be immediate, or would it be following a wee bit of a build up.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

cornelia

Post by cornelia »

PB, research of second generation AD's (don't know if A.... belongs to this) has shown that you will notice within 5 days if your RLS has gotten worse, so quite soon you will know and hopefully with a good outcome for you.

Corrie

Polar Bear
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Post by Polar Bear »

Thanks Corrie
Betty
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ViewsAskew
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Post by ViewsAskew »

How wonderful! Let's hope that continues.

Per how long...the few people here that had a bad reaction had it on night 1, IIRC.
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.

Polar Bear
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Post by Polar Bear »

Thank you Ann.

?? What is IIRC ?
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

ViewsAskew
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Post by ViewsAskew »

IIRC - if I remember correctly

:lol:
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.

ViewsAskew
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Post by ViewsAskew »

Betty/WV wrote:Ann: I took neurontin for years. I

BETTY/WV


We change over time. It might be that a bit of Neurontin with a bit of something else would work better than just one drug. Dr Buchfuhrer is a big proponent of that...but not all doctors agree.
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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