1st post after 24 years of RLS

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Yankiwi
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Location: West Coast, South Island, New Zealand

Re: 1st post after 24 years of RLS

Post by Yankiwi »

Instead of a laxative I use Benefiber and occasionally Metamucil. They are not drugs but keep things moving naturally. I and my GP both prefer them over drugs such as soflax.

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

Well, if you can get hydromorph contin, that would probably work for you, but you might need 6 mg. Anyway, I think you should try the recommended 3 mg and see what happens.

Since you're likely facing a long time on opioid medications, the best remedy for constipation would be a diet-based one. Google will give you lots of home remedies for while it's happening, as I'm sure you know, and lots of semi-scientific discussions about how to prevent it - soluble and insoluble fiber, how you need both, & how too much fiber can make matters worse.

For what it's worth, my experience is that constipation can be managed by eating a silly amount of vegetables every day, meaning 4 cups at least, made up of dark leafy greens, colored vegetables, and cabbage-family/onion-family vegetables - - not starchy vegetables like potatoes. If I start getting bunged up, I always realize I've been slacking off on the veggies, and I eat a salad or a mess of sauteed vegetables as soon as I can. If things have gone too far, I have a shot of lactulose, but I don't often need that. That said, everyone is different, and you will have to figure out for yourself what works. The thing to focus on, in my opinion, is diet. There is a diet that will solve this for you, I bet.

Another thing you might try is taking magnesium citrate or another Mg supplement. Most North Americans are lacking in Mg, I've heard, and when you take enough of it, it loosens your stool. (That's actually how you're supposed to tell that your dose is a bit too high.)

You seem to have a good plan, you just need to see your doctor so you can implement it -- - get the dilaudid or similar long-acting opioid, fix your diet if possible and/or get a good supplement or medication to deal with the gut issues, and adjust your vaping/oils.
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.

Yankiwi
Posts: 548
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: 1st post after 24 years of RLS

Post by Yankiwi »

Pears have a lot of fiber, more than apples and kiwifruit is an excellent source of fiber. Avocados are high in fiber and high in price in New Zealand ($7.00 at one point last year :shock: but I call it medicine and have a half every day although I never needed to buy one at that ridiculous price.

ViewsAskew
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Re: 1st post after 24 years of RLS

Post by ViewsAskew »

As long as I keep my opioid dose relatively low, if I eat high fiber in my choices (both Yankiwi and Beth had good options) and add one magnesium supplement (I happen to have one that is a mix of three types and I think 500 mg), I am solid. When I slack off walking, particularly, I can tell. The motility is slower and without regular walks, the transit time can get verrrrrrry long. Regular activity can help keep the intestines moving, too. Water/liquid helps, 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.

Icantsleep
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Ok so .....

I went back to 60mg codeine nightly from 75mg.
I took 3 days of senekot and just tonnes of water and good fibre
I fixed the constipation for the most part but the RLS symptoms were becoming brutal again .

LAST NIGHT :
All meds were taken 2 hours later than planned for reasons beyond my control .
I took a sliver less clonazepam than my usual 0.75mg
About 20% less Thc oil (now about 10mg)
About 40% less cbd oil (soon will be zero)
I TOOK 50MG CODEINE CONTIN at about 1015pm.
I did not vape any marijuana at all

I had one super minor hint of rls after sleeping a few hours
I started waking up and had trouble falling back asleep for a while
I did sleep on and off again until 8am .

..... problem was I couldn't really get out of bed until noon

The 50mg of the contin variety was a bit much
It is now 130pm and I just wish it would go away .
I ate, showered, brushed my teeth , walked around but I still feel it
And I highly doubt I'll be having a BM today

I hope I can do my meds earlier tonight , but I'm off to such a late start
I'd basically need to start taking my meds 4 hours from now

Not sure if I'll go back to immediate release codeine tonight
I couldnt imagine taking more meds of any kind right now

The struggle continues to find middle ground between symptom relief and side effects.
I wish I could reduce the 50mg codeine contin even slightly
I cant reduce clonazepam even slightly
I will reduce thc oil by perhaps another 25%
I'll eliminate cbd oil

Maybe I need to adjust to the new codeine contin ?

stjohnh
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Re: 1st post after 24 years of RLS

Post by stjohnh »

Before my IV Iron treatments, my optimized dose of THC was 10mg 2hours before bedtime and 5mg 4-5 hours later. I found CBD not helpful.
Blessings,
Holland

Icantsleep
Posts: 216
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

stjohnh wrote:
Fri Sep 11, 2020 7:33 pm
Before my IV Iron treatments, my optimized dose of THC was 10mg 2hours before bedtime and 5mg 4-5 hours later. I found CBD not helpful.
I've got the cannabis stuff pretty much figured out .

It's the optimal opioid dose I need to find.
(Unless of course going on Neupro patch after augmenting with mirapex is the answer
..... yeah ... didnt think so )

21 hours after my first codeine contin dose and I think its finally subsided
Just in time for me to take my clonazepam and start all over again... ugggg

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

Have you figured out if you were groggy from the codeine contin or from having poor sleep quality that night you posted about?
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.

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

badnights wrote:
Sun Sep 13, 2020 7:45 pm
Have you figured out if you were groggy from the codeine contin or from having poor sleep quality that night you posted about?
It was definitely the codeine contin
It was unlike anything I'd ever felt
I went back to immediate release codeine the next night and have been using it since

With that said no matter how much I apparently sleep overnight I have a real hard time getting out of bed and functioning in the morning
I want a late morning nap every day (and I usually succumb)
My to do list is growing as I'm not able to drive
(I need to sell a car/ buy a new bed etc but cant get out )

Icantsleep
Posts: 216
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Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

So I figured out the rls

Minimal side effects with minimal rls (to make a long story short.... also , it obviously wont last long )

Same day that happens I get severe TOS down my whole left arm.
I have it from sleeping so poorly on my left side .
It starts in my shoulder

The discomfort in my left shoulder was not new ...
I felt it last 2-3 months
It's the reason I am going to by a new bed

What's new is AWFUL severe deadening numbing pain that shoots through my bicep down to the back of my hand .
My codeine doesnt touch it

Urgent care doctor said to try anti inflammatories or go back on Lyrica .
I actually did take some CBD oil again
Got referred to physio

Have appointment Monday night

Sleep is difficult
And wow its getting worse fast
I've never felt this

Oh I did get rls earlier after drifting off so there goes that streak
I'm totally delaying sleep
Dreading it

Polar Bear
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Re: 1st post after 24 years of RLS

Post by Polar Bear »

Referring to your post of 11 Sept I see that you changed the dosages of several of your medications at the one time.
Speaking only from my own experience, does this not make it complicated to figure out which change is caused by which medication adjustment because we know that meds don't always perform exactly the same night after night.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Pretty sure I dont all of a sudden have severe TOS because i tinkered a bit with my cannabis and switched to codeine contin for one night .

Every change I make is discussed with a doctor prior to and after the fact

badnights
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Re: 1st post after 24 years of RLS

Post by badnights »

Betty's just saying it's hard to track what med does what if you change more than one at once. It's a general truth.

I hope you get the TOS sorted! I didn't know it had a name, but I may have had that. It's horrible, and really messes up your life - a catch-22 cuz sleeping makes it worse and it makes sleeping worse. Have you tried propping yourself up with pillows on either side, so when you try to roll onto your bad side, you're partly supported by a pillow on the good side? - lying back partly on the pillow instead of fully on your side. It does require a bit of self-training to form the habit, to deny yourself that feeling you crave of lying exactly the way you want. The craving goes away pretty quick for me, though.

Having a pillow on either side is good policy for anyone. You can hug the pillow while lying on your side to prevent collapse of the chest, or put it between your knees to keep your hips better aligned with each other. Or do both at once, with a body pillow on each side.

I also use a pillow under my knees, to avoid back pain. (Yes, I have pillows on all sides.)

The codeine contin might be ok for you if you weren't also taking clonazepam.
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.

Icantsleep
Posts: 216
Joined: Sun Oct 16, 2016 6:07 am
Location: Ottawa Canada

Re: 1st post after 24 years of RLS

Post by Icantsleep »

Hi
Been a while

So I solved that TOS pretty quick but still havent gotten a new bed to hopefully solve the shoulder pain

My biggest dilemma remains codeine (opiates/opioids) and side effects
To avoid rls symptoms 4,5 or even 8 times a night I need a dose of codeine or codeine contin that in turn gives me just absolutely unbearable side effects

I have gone through full blown augmentation using mirapex
After completely going off it, I resumed twice which brought relief.... first for a few months and second time only for a few days

I have not had any mirapex in 6 months

Could I try .5mg neupro patch in conjunction with codeine ?
... or could I perhaps alternate between the 2 for maybe a week or two at a time

Codeine night in night out comes with just absolutely unbearable side effects in OIC in basically any dose or excessive sedation with the codeine contin

I need to try something different
I've recently done the Lyrica thing and it's a nope .)

I dont want to screw up my dopamine receptors even worse than they are by using Neupro patch , but at this point I'm essentially willing to gamble .
(Maybe I've answered my own question then ??)


I continue to take clonazepam and use THC and CBD as sparingly and effectively as I can
Please excuse the rambling if any , as I am currently fighting rls even though I'm high on THC

....... also Merry Christmas !!!!

Rustsmith
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Re: 1st post after 24 years of RLS

Post by Rustsmith »

Many of us use a combination therapy to keep the dose of any one med as low as possible. After I augmented on both pramipexole and Neupro, I started using methadone, but the dose required to control my RLS was causing other issues. So I added some pramipexole back and reduce the opioid dose so that neither one bothers me now. I first augmented on pramipexole after 12 months, but I have been using it in combination with either methadone or tramadol now for five years and haven't had any issues with the pramipexole (the methadone and tramadol are different matters).

But the only way that you will know is to try it out yourself. In this regard, we are all a clinical trial of One.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
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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