Going to try alternating... Opinions wanted

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stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Going to try alternating... Opinions wanted

Post by stjohnh »

Regulations in USA make opiate prescribing by doctors more difficult, and just recently the FDA issued even stricter regulations. Opiates for other than chronic pain are getting more and more difficult for doctors to prescribe without getting into trouble. The evidence that opiates are needed for many people with severe RLS doesn't carry much weight here so far.
Blessings,
Holland

QyX

Re: Going to try alternating... Opinions wanted

Post by QyX »

Hey ...

but isn't there a difference between prescribing low potent opioids / opiates like Codein, Dihydrocodein (DHC), Tramadol etc. and the high potent ones like Oxycodone?

In Germany and as far as I know in every other Europe country, Codeine like opioids are relatively easy to get. The doctor can just write a normal prescription and nobody controls it. For Morphine like opioids we have special narcotic prescriptions and strict regulations when it comes to filling and prescribing. So Doctors here in Germany hate to use these narcotic prescriptions.

So many people with severe (chronic) pain end up getting drugs like DHC, Codeine or Tramadol although they would need Oxycodone, Hydromorphone etc.

My RLS has a big pain component. Probably that is why an opioid alone in my case is not enough and I also need the Carbamazepine.

RLS has many aspects of chronic pain and there a lots of cases were a pain aspect is present. So isn't it all just a matter of interpretation?

When you listen to doctors like him: https://www.youtube.com/watch?v=iCNI_UCj7SI ... it looks like that the U.S. are pretty advanced when it comes to RLS research and treatment. I don't know one single doctor who is prescribing Methadone for RLS. So when I add it all up, it seems like the U.S. are still more liberal.

In the world of medicine, it looks like the U.S. are always a couple of years ahead. At least this is true for Psychiatry. I find it hard to believe that there is no way for you to get your hands on opioids ... when you start trying. (Sorry, I don't want to push you into anything. Maybe this is an inappropriate suggestion. In Germany I had to so see a couple of doctors when I moved from south Germany to Berlin until I found someone who was willing to continue the opioid therapy. I had all these papers from the hospital, from one of the leading Neurologist in the area who wrote that I need long term opioid therapy but many doctors didn't care a bit. So I know that it is not easy. After all the opioid situation is still much more liberal in the U.S. then in Germany but that's probably changing. Here in Germany, the doctors always have been sceptical how opioids have been used in the U.S. Since I am on opioids, I found an interest in the topic and read and watch everything I get my hands on. This pain clinic epidemic in Florida, something like this never could have happened in Germany.)

There is more and more evidence that the psychophysiology of RLS has a lot to do with a lack of endogenous opioids in the CNS. Seems obvious that taking opiods is probably "the best" treatment option.

Taking DAs seems to be a tricky workaround and as long as it works, perfect. But augmentation is just horrible. I was suffering so much from it because opioids alone never did it for me. Opioids stopped the restlessness instantly but still, there was this insomnia part and the pain where opioids were helping but still I always had a lot of symptoms present.

Rustsmith
Moderator
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Going to try alternating... Opinions wanted

Post by Rustsmith »

Access to opiates for treating RLS is very much a function of where you live within the US. Yes, there are physicians who will prescribe them, but there are not very many who 1) have sufficient understanding of RLS to recognize the need and 2) who are not under pressure not write long term prescriptions for any form of narcotic. I live in a town that apparently has a reputation for wide spread prescription drug abuse. Every neurologist that I contacted was not willing to prescribe opiates for the treatment of RLS. I therefore have to travel 2 hrs away to see a physician/researcher at the medical school located in the state capital. This is a bit of an inconvenience except when you take into consideration that prescriptions for opiates are only valid for 28 days. Some doctors have developed ways to work around this for their RLS patients, but these are simply examples of how the government's war on prescription drug abuse is becoming a problem for those of us who really need them and are not potential candidates for abuse.

We have also had members of this board who have reported that their doctor required them to come in each month for their prescription and that they were required to take a urine test to prove that they were taking their medication rather than selling it. The problem arose from the fact that their insurance would not cover the urine test and that the cost of the test was something like $1500.

So, although the physicians in the know may be more "liberal" in their use of opiates like methadone than their European counterparts, the delivery system is rigged against many of the patients who need them.
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.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Going to try alternating... Opinions wanted

Post by stjohnh »

QyX wrote:Hey ...
My RLS has a big pain component. Probably that is why an opioid alone in my case is not enough and I also need the Carbamazepine. ....


Possibly, however RLS has a separate sleep component that is distinct from the jumping legs component. I've only taken an opiate intermittently, not on a regular basis for my RLS, however reading the boards here makes it clear that a large number of people that are on opiates still have sleep problems if they don't take anything in addition to the opiate.
Blessings,
Holland

ViewsAskew
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Posts: 16571
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Going to try alternating... Opinions wanted

Post by ViewsAskew »

stjohnh wrote:
QyX wrote:Hey ...
My RLS has a big pain component. Probably that is why an opioid alone in my case is not enough and I also need the Carbamazepine. ....


Possibly, however RLS has a separate sleep component that is distinct from the jumping legs component. I've only taken an opiate intermittently, not on a regular basis for my RLS, however reading the boards here makes it clear that a large number of people that are on opiates still have sleep problems if they don't take anything in addition to the opiate.


Many of us believe that there is another component to this. The researchers at Johns Hopkins are looking at glutamate for that very reason. My legs are quiet, I haven't slept in 29 hours, but I took the opioids a few hours ago...and I'm still up and relatively functional.
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
Moderator
Posts: 8799
Joined: Tue Dec 26, 2006 4:34 pm
Location: United Kingdom

Re: Going to try alternating... Opinions wanted

Post by Polar Bear »

Views - I have total empathy on the no symptoms/no sleep/relatively functional and often wonder how I managed to keep on working to retirement.

I worked full time on 3 - 4 hours sleep. On one occastion I did a 17 hour transatlantic journey without sleeping, arrived home and immediately did all the laundry while my husband crawled up the stairs to bed.

We are certainly a special breed.
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

QyX

Re: Going to try alternating... Opinions wanted

Post by QyX »

stjohnh wrote:
QyX wrote:Hey ...
My RLS has a big pain component. Probably that is why an opioid alone in my case is not enough and I also need the Carbamazepine. ....


Possibly, however RLS has a separate sleep component that is distinct from the jumping legs component. I've only taken an opiate intermittently, not on a regular basis for my RLS, however reading the boards here makes it clear that a large number of people that are on opiates still have sleep problems if they don't take anything in addition to the opiate.


Yes. I have to take the Carbamazepine and even with it, sometimes I still have trouble falling asleep, especially when I have changes in my daily routine. I started going to the gym again and it caused insomina instantly.

I live with this constant fear of not being able to sleep coming night.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Going to try alternating... Opinions wanted

Post by stjohnh »

I find high THC medical marijuana helps sleep as well, especially when eaten.
Blessings,
Holland

QyX

Re: Going to try alternating... Opinions wanted

Post by QyX »

stjohnh wrote:I find high THC medical marijuana helps sleep as well, especially when eaten.


It did help me when I was around 18 ... but later, at the age of 19 I had a psychosis who was connected to severe insomnia (about two weeks without sleep) and at the undiagnosed Asperger-Syndrome. Because of the psychosis I got misdiagnosed as bipolar and years of mistreatment and disaster followed.

Cannabis now sedates me but it doesn't help falling asleep faster. It became useless.

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