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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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
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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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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
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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
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I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

QyX

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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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.

Brynmr
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Re: For Anyone Who Thinks RLS is a Joke

Post by Brynmr »

EeFall: Do you have a religious faith? If you have no religion it will most certainly help you to find one and embrace it. Of course it won't cure your RLS but it will help you greatly.

Dr.Placebo
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Re: For Anyone Who Thinks RLS is a Joke

Post by Dr.Placebo »

I would like to chime in on the subject of religion, or spirituality. I am not religious per se, but prior to losing my life to RLS/WED I practiced Zen Buddhism seriously for about 30 years. Buddhism is a wonderful path to compassion, understanding and liberation from suffering both for oneself and others. Unfortunately following the path of Zen requires meditation, and meditation requires 2 things: strong mental focus, and deep relaxation; two things which are out of reach for people with RLS/WED. so my spiritual practice (and it's potential for peace and equanimity) is one more thing that this dreadful disease has taken from me. Sorry, feeling sorry for myself is not pretty, but sometimes expressing it helps me feel unburdened, or something. (BTW, taking a little modafinil does sometimes help me stay alert and focused while meditating but other times causes overstimulation and excessive mental activity. )
Paul

badnights
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Re: For Anyone Who Thinks RLS is a Joke

Post by badnights »

I hesitate to mention this - -

I was not a heavy meditator before WED/RLS. Meditation was suggested to me a number of times since WED/RLS, but I always gave up on it because of the symptoms. But last Dec I started the Gupta Program for CFS/ME, firbomyaliga, electrical/mold/food/chemical sensitivities, and other chronic illnesses that are all classified (by them) as limbic system dysfunctions. (Actually, I think that term belongs to their competition, Dynamic Neural Re-training System or DNRS. But whatever.) They don't list WED/RLS but it sure seems from their descriptions that it must be a limbic system impairment.

The program requires two meditations a day, of at least 20 min each, trying to increase to half-hour, hour or more.

I have been doing this almost every day. At first, I couldn't do it in the evenings. I had to do it in the morning, and the second one in the afternoon. Sometimes by then I was having symptoms so I finished up (or did the whole meditation) on an exercise ball, not really conducive to establishing a meditative state but better than nothing. My default state has been so high-strung that any time I could spend encouraging my parasympathetic nervous system to take over was well-spent.

I've had "dips" where I get worse, and then I can't even meditate in the mornings - but I put my time in anyway, on the ball, or even (if it's really bad) walking outside trying to focus fully on each footstep.

Upshot: seemed crazy at first and I don't know why I stuck with it, but I am getting better. I still take the same meds, but I need breakthru meds less often, I have less symptoms; and I am much more centered and calm. I'm getting better in some ill-defined nebulous but lovely way.

I don't know what I can say to someone who meditated regularly and practiced a Buddhist lifestyle for 30 years. Could it be possible for you to find a way back to meditation? Time of day? Lowered standards? There is no way to make it work when symptoms are wild. But if they are kind of background, there is something that can be done; it is not going to be anything like a proper sitting meditation - but will it maybe be better than nothing?

I can't account for my improvement without giving credit to the meditation. But then, I've been a raging mess for 15 years because of the WED/RLS and I was even high-strung before it, so maybe improvement from such a low position was relatively easy to achieve!
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.

ViewsAskew
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Re: For Anyone Who Thinks RLS is a Joke

Post by ViewsAskew »

I was nowhere close to your 30 years, but meditated regularly for about ten or so years (I also swam about a mile 5 days a week, and am sure that they worked together to change my life). Losing that practice has made my life so much more chaotic. It was slow, but over time I've become more reactive, less grounded, and many other things that are not improvements or positive in any way. I have tried a few times here and there to restart my practice and I simply fall asleep. I no longer have the movement issue...I'm just tired all the time. The best I have done is to learn how to knit and use that to be somewhat meditative as I do it.

Beth, that sounds lovely. Truly lovely.
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.

badnights
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Re: For Anyone Who Thinks RLS is a Joke

Post by badnights »

One of the other things about the program that I've really really benefitted from is the instruction to sleep until I wake up. I can't do that all the time, and people who don't work at home would find it impossible, but it has truly helped me. I used to fall asleep in every meditation but I kept meditating because they said that even then I would be getting benefit from it. Now I don't fall asleep as much
Beth - Wishing you a restful sleep tonight
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jul2873
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Re: For Anyone Who Thinks RLS is a Joke

Post by jul2873 »

I've had RLS for at least 30 years--probably much longer--but didn't have it diagnosed until about ten years ago. By then I was reading these boards, so when my doctor tried to put me on a DA, I never got the prescription filled. Instead, I searched all over the Internet and found kratom. I've been using it ever since.

I always tell my doctor what I'm taking, so a number of my doctors over the year have tried to switch me off the kratom to ripinirole, to the DA patch, to gabapentin, and lately to Lyrica. I've tried them all ,except the DA patch, and always tapered off within a few weeks. The kratom seemed to work just as well--often better--and didn't leave me with the depression and sleepiness the other drugs did. I don't sleep straight through--I'm usually up at least two or three times--but I'm 78 now, and don't have to worry about being able to work all day. I usually nap, or at least lay down for an hour and read in the afternoon. I take however much kratom I need,which is more than I started with, but not too much more. And it still works for me. I read some of the kratom discussion boards, and the funny thing is that many people take kratom as an anti-depressant, or something to give themselves energy. I think it also is keeping my blood pressure low. Oh, and I've had iron infusions, which really did help a lot.

I feel very thankful to this Board for keeping me away from the DA drugs, and my guess is--because I never took them for more than a week or so--my RLS isn't nearly as bad as so many of you here have. I'm so sorry so many of you are having such a hard time.

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