Can a treatment plan revolve around opioids?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Polar Bear
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Re: Can a treatment plan revolve around opioids?

Post by Polar Bear »

Pancake_muncher..... I live in the UK.

Note: I should have added that I take daily iron, plus magnesium and vit C.
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

ViewsAskew
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Re: Can a treatment plan revolve around opioids?

Post by ViewsAskew »

Pancake_muncher wrote:
Mon Aug 10, 2020 6:03 pm
Hopefully I don't have to go there yet .I will go get a blood test in friday.Hopefully they find my iron and ferritim are low so that I can be prescribed iron tablets.I am hoping that it will help.
Important to ask for the actual values from the test results - some doctors do not know that a low ferritin for someone with RLS is different than a low ferritin for someone without.
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: Can a treatment plan revolve around opioids?

Post by badnights »

Well, I can't really follow that advice with anything better, but I can re-iterate some things and add some comments.
Steve wrote:Since you have not started treatment, here is a publication that applies to you when it comes to deciding what form of treatment that you need. It also does a good job of discussing augmentation. https://www.sciencedirect.com/science/a ... 5716000563
Further to Steve's comment, see also Buchfuhrer's paper, he's a WED/RLS specialist who recommends that the max doses of dopaminergic medications for WED/RLS be lowered even further, to 0.25 mg pramipexole or 1.0 mg ropinirole. (Click the link in my signature line, then scroll down to the Buchfuhrer paper; or just click here ) ****EDIT: I just found out that all my attachments are lost, probably from when the board was migrated to a new server. I will replace them but it may take a while. Meantime, this is the paper I was talking about:
I am only 22 and i dont know how I am going to deal with this since DA dont work forever.......
I re-iterate what the others have said about the outlook not being as gloomy as you think.

You haven't mentioned how this started. Did it come on suddenly or gradually? Have you had it all your life? Did it just get worse recently? My next question, if it got worse suddenly, is what else changed around then? Did you start a new medication - an anti-histamine, for example? Or an anti-depressant, anti-psychotic, anti-nausea medication? Did you change your diet - start eating more sugar, more carbs, less meat, any major change? Did you move somewhere new? Did you have a surgery? Have you been donating blood? (if so, stop).

Also, as the others have said, read up on iron and WED/RLS - the disease is essentially a deficiency of iron in the brain, although there isn't a good way of measuring that, nor of getting iron from the blood into the brain when the transport mechanism may be defective.
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: Can a treatment plan revolve around opioids?

Post by QyX »

Pancake_muncher wrote:
Mon Aug 10, 2020 6:03 pm
Hopefully I don't have to go there yet .I will go get a blood test in friday.Hopefully they find my iron and ferritim are low so that I can be prescribed iron tablets.I am hoping that it will help.
Not sure where you live but all western countries I know have iron tablets available OTC without prescription. There are all kinds of different iron tablet versions (fast release, extended release, low dose combined with other vitamins).

In any case, when you take iron tablets, make sure you take it together with Vitamin C.

Pancake_muncher
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Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

badnights wrote:
Fri Aug 14, 2020 5:56 am


You haven't mentioned how this started. Did it come on suddenly or gradually? Have you had it all your life? Did it just get worse recently? My next question, if it got worse suddenly, is what else changed around then? Did you start a new medication - an anti-histamine, for example? Or an anti-depressant, anti-psychotic, anti-nausea medication? Did you change your diet - start eating more sugar, more carbs, less meat, any major change? Did you move somewhere new? Did you have a surgery? Have you been donating blood? (if so, stop).
It came suddenly.Hit me like a train one night.I got my ferritin checked like you guys suggested.It is 12.My serum iron is 16 mmol/l so my doctor started me on iron supplements. It started about 2 weeks after is started using copious amounts of alcohol and cigarettes to numb the pain of my brothers condition.It has been getting better as he has been healing splendidly and I have been reducing the amount I smoke and drink.I hope this trend continues.

Pancake_muncher
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Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

QyX wrote:
Fri Aug 14, 2020 11:47 am

Not sure where you live but all western countries I know have iron tablets available OTC without prescription. There are all kinds of different iron tablet versions (fast release, extended release, low dose combined with other vitamins).

In any case, when you take iron tablets, make sure you take it together with Vitamin C.
I have started taking spatone liquid iron.

Polar Bear
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Re: Can a treatment plan revolve around opioids?

Post by Polar Bear »

Don't forget to also take the Vit C as it helps the iron to be absorbed better.
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

badnights
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Re: Can a treatment plan revolve around opioids?

Post by badnights »

It came suddenly.Hit me like a train one night.I got my ferritin checked like you guys suggested.It is 12.My serum iron is 16 mmol/l so my doctor started me on iron supplements. It started about 2 weeks after is started using copious amounts of alcohol and cigarettes to numb the pain of my brothers condition
I imagine your doctor has considered that internal bleeding might be the cause of the low iron (and therefore the RLS/WED)? The fact that it started suddenly really suggests a reversible cause, if you could pinpoint the cause.
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.

ViewsAskew
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Re: Can a treatment plan revolve around opioids?

Post by ViewsAskew »

Keep us updated!
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.

Pancake_muncher
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Joined: Wed Jul 08, 2020 3:20 pm

Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

ViewsAskew wrote:
Sun Aug 16, 2020 12:39 am
Keep us updated!
It's getting better!It stopped being 24/7.It now starts at around 6-7 pm and now it's 80% of what it used to be.I have also reduced the caffeine, cigarettes and booze substantially and I am taking my iron.

Yankiwi
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Re: Can a treatment plan revolve around opioids?

Post by Yankiwi »

Before taking iron I was lucky to get four hours sleep and when awake was walking and often crying from severe pain. Now, several years after taking iron along with 25mg ropinerole (occasionally another half tablet but I'm afraid of augmenting again) and two 60mg codeine tablets (one before bed, one upon first awakening) I'm able to get six hours sleep out of around ten from going to bed to finally getting up for good. I sometimes take a nap, trying to limit it to 20 or 30 minutes and not too close to bedtime.
I'm scared of taking more drugs and am happy with six hours although I still have dark circles under my eyes.. In the night I reverse-binge watch Netflix, around a half hour at a time and read, walk stretch, rub calves etc until it is "safe" to go back to bed.

badnights
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Re: Can a treatment plan revolve around opioids?

Post by badnights »

yankiwi do you mean 0.25 mg ropinirole? (I hope so!).

I too benefit a lot from iron pills, but they take 3-4 weeks to have effect if I stop taking and re-start. Qyx, on the other hand, noticed benefits almost right away - I think it was within a day. Other people here feel that iron pills benefit them when taken "as needed" when symptoms flare up, but I think most of us require some time for the iron to build up in our systems before we notice the benefit.

pancake, I am still worried about the sudden onset of your WED/RLS, and the possibility of internal bleeding. Did your doctor rule that out? But I am certainly glad it seems to be backing off in response to your changes. If you want to keep one of your comfort substances while you focus on getting rid of the others, keep the cigarettes. Tobacco or nicotine have not been shown to cause worsened RLS/WED in any study I've seen, yet it gets repeated everywhere that it's a trigger for WED/RLS. Smoking is definitely bad for you in many ways, so if you can stop, great!, but as far as your WED/RLS goes, I think you will see more benefit from stopping booze and coffee. And continuing with the iron. 80% of terrible is still terrible, so I hope it continues to improve.

You might want to look at diet, too; removing highly processed foods and substituting whole foods, as close to locally grown as possible, spending the extra on organic if at all possible. No added sugars. Lots of dark leafy greens, colored vegetables (red, yellow, orange), and sulfur-bearing vegetables (the cabbage family, mushrooms, onions, garlic).

And you might consider supplementing with vitamin D. It is the only other micronutrient for which low levels have been correlated with worsened WED, besides iron.
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.

Pancake_muncher
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Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

badnights wrote:
Tue Aug 18, 2020 5:03 am

pancake, I am still worried about the sudden onset of your WED/RLS, and the possibility of internal bleeding. Did your doctor rule that out?
He didn't but after the RLS got worse I had to get an MRI scan of pretty much my whole torso and nothing was detected.

Yankiwi
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Location: West Coast, South Island, New Zealand

Re: Can a treatment plan revolve around opioids?

Post by Yankiwi »

yankiwi do you mean 0.25 mg ropinirole? (I hope so!).
Yes, absolutely! Thanks for picking up my mistake.

Pancake_muncher
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Joined: Wed Jul 08, 2020 3:20 pm

Re: Can a treatment plan revolve around opioids?

Post by Pancake_muncher »

badnights wrote:
Tue Aug 18, 2020 5:03 am
pancake, I am still worried about the sudden onset of your WED/RLS, and the possibility of internal bleeding. Did your doctor rule that out?
It finally clicked.I had to give blood to my brother after his operation. I had to because there was a complication and he lost some blood and I am an universal donor.It happened around the time my RLS got worse.Maybe 3 days before.And it now starts at 9 pm. and is 50% of its previous intensity.

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