For Anyone Who Thinks RLS is a Joke

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
badnights
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Re: For Anyone Who Thinks RLS is a Joke

Post by badnights »

It was a nice thought...... maybe next time.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

EeFall
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Location: Washington State, USA

Re: For Anyone Who Thinks RLS is a Joke

Post by EeFall »

Around and around we go - I go round and round and always back to that one main fact, I have this dang severe RLS and its never going to change. I don't want to take meds but I do want to live, if I don't take my meds I'm not really living.

The other reality is that we are never static beings. We spend our youth wanting to grow up and be like the adults. Once we become those adults we eventually realize that are wonderful glorious bodies have this really mean trick called old age. Ouch it hurts! Now I have RLS plus sore bunion toes, arthritis in my fingers, a pain in my lower back, and ringing in my ears which is not coming from my ears at all but from my poor ole aging brain - tinnitus is the fancy pants name.

So now it is severe RLS plus. Plus what? Old age. It is funny really. I think about a guy I knew in high school from time to time. A week or two after graduating he died in a horrible car accident. I think about all the things he has missed, but also think sometimes that maybe the good do die young.

It is 3:10 am and I will have to get up in another hour and a half so no need to do that now (go to bed), I will just wait for the coffee maker to turn on at 4:35 am and have a cup. Another night thinking while most are sleeping. A curse or a blessing, who can tell?

badnights
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Re: For Anyone Who Thinks RLS is a Joke

Post by badnights »

I hope it's better tonight eefall.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

debbluebird
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Re: For Anyone Who Thinks RLS is a Joke

Post by debbluebird »

Why is the alarm going off so early? Sometimes that's about the time I'm able to sleep. Then sleep until noon.
I've also thought about what it would be like not to be taking meds. It would be an end of life situation. A person is only able to stay awake for a month before you die. I don't think I'd last a month. I start feeling sick after two days.
I worry about not being able to get the methadone and gabapentin. People are getting so uptight about meds.
Even when I get sleep I don't feel rested. It's never ending.

EeFall
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Location: Washington State, USA

Re: For Anyone Who Thinks RLS is a Joke

Post by EeFall »

debbluebird wrote:Why is the alarm going off so early? Sometimes that's about the time I'm able to sleep. Then sleep until noon.
I've also thought about what it would be like not to be taking meds. It would be an end of life situation. A person is only able to stay awake for a month before you die. I don't think I'd last a month. I start feeling sick after two days.
I worry about not being able to get the methadone and gabapentin. People are getting so uptight about meds.
Even when I get sleep I don't feel rested. It's never ending.
A few years ago I found a video on Internet that showed a guy who had a sleep disorder (not RLS) where he had not slept in over two years. The video was of him thrashing around in a hospital bed. He was totally out of his mind and could not communicate with anyone. He didn't last too much longer after the video had been taken but I thought that would be the ultimate misery.

Polar Bear
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Re: For Anyone Who Thinks RLS is a Joke

Post by Polar Bear »

Oh why was this poor man not sedated?
The misery of lack of sleep is indescribable.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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badnights
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Re: For Anyone Who Thinks RLS is a Joke

Post by badnights »

There's a disease called Fatal Familial Insomnia. Maybe that's what he had. It's invariably fatal. Sleeping meds do nothing. It manifests in the 20s -30s (after reproduction). It's genetic. It's the only known disease that causes worse sleep loss than WED/RLS, according to Richard Allen in a quote I can't re-locate but when I find it I will post it.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

QyX
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Re: For Anyone Who Thinks RLS is a Joke

Post by QyX »

Hey EeFall,

I just read your first post again and now see your post from April this year that shows, that you were not able to improve your RLS much. Can you make a list with all the drugs & therapies you have tried already?

Also regarding this anger thing: so Buprenorphine does stimulate different opioid receptors than the morphine-type opioids. Buprenorphine can sometimes cause dysphoria. It could very well be possible, that this plays a role in your anger but of course, with chronic insomnia, the sleep loss alone can explain the situation.

Have you ever tried a classic, morphine-type opioid?

EeFall
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Location: Washington State, USA

Re: For Anyone Who Thinks RLS is a Joke

Post by EeFall »

QyX wrote:
Sun May 31, 2020 10:07 am
Hey EeFall,

I just read your first post again and now see your post from April this year that shows, that you were not able to improve your RLS much. Can you make a list with all the drugs & therapies you have tried already?

Also regarding this anger thing: so Buprenorphine does stimulate different opioid receptors than the morphine-type opioids. Buprenorphine can sometimes cause dysphoria. It could very well be possible, that this plays a role in your anger but of course, with chronic insomnia, the sleep loss alone can explain the situation.

Have you ever tried a classic, morphine-type opioid?
As far as a list of what I have taken it has been 20+ years and I don't remember them all anymore. As far as opioids I did take methadone by itself and in combination with other drugs. The best med was mirapex which lasted for about 6 or so years but they didn't take me off of it for a long time after starting to have the usual problems with it.

The last drugs I took before Suboxone were 4 or 5 drugs everyday that included Methadone. The doc just kept adding one more drug to make it work until it didn't. Can't remember all of the names maybe I can find them on here in one of my posts. As far as the anger the pandemic makes it much easier for me to maintain as there is no one around but my wife and the wild animals outside.

Update:
I did look up my last drugs I was taking before Suboxone from info on this site:
Methadone, Lyrica, Mirapex, and Ambien (once in awhile). I didn't even remember I was still taking Mirapex back in 2013 - yikes.

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