Am i hearing that effective opioids lead to morphine and then nothing will help? How scary is that?

[mmm66]

[jumpinjack]

I'm sure a lot of us would be willing to try opiates and derivatives if given the chance; even on a short term basis.Where did you get this information though, was this from a fellow RLS sufferer, informed article etc?

[mmm66 in reply to jumpinjack]

I read it on one of the facebook RLS sites or a site similar to this-someone had posted it. Fellow sufferer, not 'informed' article.

[nightdancer in reply to mmm66]

be careful what you read. The only pages on FB besides this one and RLS Foundation US are the ONLY ones I would trust. I know all of them, and the others are not as well informe, and obviously using scare tactics or reading the wrong things about meds. That is ceratinly NOT true, and someone is trying to scare you off from a treatment that could hep you. always remember, certain people are toally against meds, or do not need then yet, so it is a known tactic to push thier views onto others. It is all very individual, but to say that any opiate use will defintely lead to morphine use is just wrong. Morphoine may be one of the meds that help you. I have been taking it for over 10 yrs and no issues here. Same dose, same relief, keeping in mind no one thing works 100% of the time ever. I take slow release morphine every 12 hrs, and have never taken an extra one, and never upped the dose. When used correctly, these meds CAN save you, so keep an open mind, just in case. Not all "regular" RLS meds work for all of us. NOne of them work fored for me, and I gave ALL of them a good go of it.

[Hidden]

Opiods are really helpful for alot of people. I wish i could take them... I havent heard that they lead to having to use morphine. But i do know of one person on here who takes morphine for her back issues which also helps her RLS, her name is nightdancer. She is the most informitve on opiods...

[peterk in reply to Hidden]

I am an RLS sufferer and I think that opiates are the only thing that helps some. They don't lead to having morphine. I can't take dopamine agonists but I have been told that they are dangerous and I have ended up in hospital with them more than once. I would'nt believe everything you read. They help me.

[daisyw]

I have a friend (aquaintance) who takes co-codamol which is an opoid for her RLS, unfortunately she is now addicted to them and is having a dreadful time coming off them

[Hidden]

There is a difference between addiction and dependant on a medication. Addiction is where you have to keep upping the dose to get the same effect, which can happen with the opiods if you do not keep to the dose recommended by your doctor. Dependant is where you keep taking the same dose but you cant get off them. The dopamine agonists are hard to get off, all most impossible for some who have tried, thats not because of addiction, but because the body has become dependant on them.

[mmm66]

thank you; that makes sense and I believe I have heard that before.

[nightdancer]

As always do not believe everything you read. I have been taking opiates for years. It is different for everyone, but there is NO PROOF that taking any opiate will "lead to morphine use". BIG difference . It is all trial and error, but having been using o[piates for years, never upping the dose, etc, etc has lead to no issues for me. Read reputable web sites, because no reputable web site is going to insist that any opiate us will definitely lead to morphine use. Absolutely false. If one has an addictive persobality, then you know what you need to watch for, bur a generalized statement like tha is VERY untrue for 99% of us who do use opiates. rlshelp.org go to treatment page. IT is the reputable "RLS MED Bible" for RLSer's.

[mmm66 in reply to nightdancer]

Thanks for the info. Oxycodone??

[nightdancer in reply to mmm66]

I use hydrocodone, which I know you cannot get in the UK, but Oxycodone is on the same idea.

[mmm66 in reply to nightdancer]

i am in US. What country are you?

[nightdancer in reply to mmm66]

I am in the US, too, so there are 4 of us here, I think? So, if you are in the US, I will tell you what I use. I use 4 5/500 hydrocodone, 60 mgs of time released morphine every 12 hrs., (BECAUSE OF BACK SURGERIES THAT FAILED), .5 mgs of Clonazepam every 12 hrs, 30 mgs of Flurazepam (sleep med) Flexeril ( muscle relaxer) meds for agoraphobic panic disorder. They obviously work or I would not have been able to travel to California last week! I have been taking those meds for over 10 yrs, tried all the rLS meds, escept the patch. That is a dopamine agonist, too, so if the others do not wrok at all, the patch will most likely not help, but we never know. See my post below about the difference between dependence and addiction. I get all my meds from ONE doctor, the others are all in agreement, and signed a narcotics contract saying, "only get meds from one doctor" "use only one drug store", etc. If all the rules are followed, there is no road that leads to morphne addiction, and/or use just because you may be using a weaker opiate. Just as an FYI, I broke my back when I was 14, RLS started mildly, had 2 back surgeries, 3 neck surgeries, total hysterectomy, am a cervical and ovarian cancer survivor, so I have been around the medical merry go round. I made it thri cancer TWICE, so will not let RLS take over. And, the only way RLS would take over, would be if I stopped my opiates, since I cannot use ANY RLS approved med.

[Hidden in reply to nightdancer]

Nightdancer, I wish that my doctor could read your

reply about the different pain meds and muscle

relaxers..My doctor told me once I am on Morphine,

I've reached as far as I can go because the combo

drugs are reserved for traumatic injuries..

To me, it sounds like you have some traumatic

injuries and that's why you are prescribed as

you are. (meaning that very respectfully and

with a kindness tone)

He said that it would be very difficult to find

a doctor that will use Vicodin long term for

RLS but being that his mom suffers from it,

he has much sympathy for anyone who does.

[nightdancer in reply to Hidden]

My neurologist and others at the pain and sleep clinic do prescribe hydrocodone for RLS, and yes, sometimes morphine. They are the ONLY 2 meds that keep my RLS quiet, trauma or not. I did not start taking the morphine until after my back surgery and my RLS just went really high in intensity. I was taking these before most of the surgeries, and they are the only things that help me at all. I have tried the whole list, trust me. So, my sleep doc says, even if my back was not such a big issue, he would prescribe hydrocodone for RLS, and does with many of his patients who cannot take ANY thing else for RLS. Some people only respond to pain meds; the dopamine meds do not do nothing for a LOT of people, including me. One of the RLS specialists, Dr. Allen, said in an article a couple of yrs ago, that we need to look at other systems besides the dopamine system for RLS, like the opiate receptors in our brains. He says "opiates almost always work, but that there are way too many people who the dopamine meds do not work for at all." So, he is doing research now away from dopamine, FINALLY. It has been too long, too many years that the focus has been on dopamine, when that class of meds clearly does not help eberyone who tries them. It is less than half of all RLSer's who try Mirapexin one Ropinierole or Neupro, that these meds help or even work a little bit. so many people NEED alternatives like pain meds to take. NOTHING wirks for me besides those, and I know for SURE I would have offed myself long before this without them. And, remember, there is big difference, as mentioned on this thread, between dependence and addiction.

[tinker4 in reply to nightdancer]

mirapex does work

[Hidden in reply to tinker4]

Well it obviously doesnt for everyone.

[Hidden in reply to Hidden]

works great for me

[Hidden in reply to nightdancer]

I think that over time more and more Vicodin is needed to get the

same effects in general..

When Vicodin no longer works, then they switch you up to Morphine..

and sometimes a bigger dose is needed to keep that same effect

going??

I had morphine only when in the hospital...Knee replacement surgery.

Worked so great for RLS...that's how I found out that I have it. lol.

I slept without any urges to move my legs the entire recovery process.

I told my doctor that and he knew what I have is called RLS.

[nightdancer]

healthcentral.com/chronic-p... this web site has the best explanation of the difference between dependence and addiction. Please read.....

[Hidden in reply to nightdancer]

I read and re-read this...I clicked on advertising as well and spoke to

a pain specialist...

I asked her how to cope with pain that takes 100% of my focus away

from every activity that I do. I can't enjoy a single thing in life without

pain and it's doubled because of no sleep with RLS...

I am present in zero events when my RA pain hits. I feel like a big

boulder is sitting on my back when I have to face another day without

sleep...

The woman on the chat line that is a pain expert told me to relax more.

I am to listen to soft music, breathe deep, relax each muscle group

from the toes up...(yay) I have to tense and release each muscle

after holding it for 20 seconds...so now I have to count and tense up

my already tense muscles...breathe out while I tell them to relax..

I need a hypnotist here with me so bad right now...

I'm crabby and tired today (little sleep last night) I have obligations

that I agreed to that I am kicking myself in the rear for accepting

and all of it is due today.... so I'm getting on that right now and

I will try her techniques later... hopefully.

[nightdancer in reply to Hidden]

her advice sounds great, just be careful what "ads" you click on. I do progressive muscle relaxation and deep breathing. It DOES bring my blood pressure down.

[mmm66]

Yes, I think i have learned, now, one should be careful of the sites. Glad to hear some of you are on these meds. Just the knowledge others are on them helps. Not glad that we need this, but the statements.

[nightdancer]

Always remember the person commenting is telling you THEIR opinion and THEIR experience. what happens to you may be totally opposite. But, low opiates are not "gateway" drugs to automatic morphine use at all, if you do not have an addictive personality, and you have a great team of doctors. I have a GP

, a neuro, sleep doc, shrink, orthopeic doctor, and a sports medicine doctor now, plus an endocrinologist. I found out I have spinal stenosis, and as my spine is crushing down on itself, we are talking more surgeries. arrrrrgghhhhhhhhh............ Thinking.........thinking

[mmm66]

I, also, have spinal stenosis and back related problems. I am thinking my new symptom of the hip joint (and it may be nerves, not the joint). are coming from back issues. This is in the last 5 weeks and no meds seem to help.

[nightdancer in reply to mmm66]

There is a muscle that goes basicaly from your tailbone and hitches to your hip, called the Piriformis muscle. (sp) When that mescle spazzes out, it can cause radiating pain to the hip. just an example of what can generate hip pain when you already have back issues. that muscle is going to be the end of me!

[Hidden]

You pretty much summed up what my doctor told me when he prescribed a

7.5 Vicodin to me... I started at 5mg. I am to use one only at bedtime. He's

getting stingy on how many nights a month I can use them.

Karen USA

[Tillytop]

This is an interesting thread. I take prescribed morphine - both for pain from longstanding rheumatoid arthritis and for RLS. I was first prescribed liquid Oromorph for the RLS and it has been absolutely brilliant for me. I now use it regularly for pain too - in higher doses than for the RLS, along with slow release morphine tablets when needed. I was really worried that I would find that, if I needed less for the pain, I would find it difficult to lower the dose and/or because I was used to it, I would then need more to help the RLS. Actually neither has been a problem for me. Yes, I do need more morphine now when pain is bad because I am used to the drug, but I just put the dose up and down as required without any real problems. Sometimes I need to take a higher dose for the RLS (again, probably because I am used to it) but generally I don't seem to have a problem., When I don't need it so much for the pain, I just go back to using the smaller doses for the RLS.

I take multiple meds for my other health conditions, so the morphine is just one more to add to the list but I do get really cross with docs who don't like to prescribe helpful meds "just in case" of problems later. I think these are the docs who don't understand the impact of RLS and other longstanding conditions on our day to day lives.

Tilly xxx

[Hidden in reply to Tillytop]

Tillytop, I do understand as a fellow RA sufferer for the past 6 yrs or

so. (I am on Simponi for the past few years) For me, I can't always

tell if it's RLS pains or RA pains..both of them make body placement

at night difficult. I dread the day, if it comes, that I can't walk off the

urges to move my legs. I can't even go there in my mind..

I have found that Vicodin helps for both things no matter what

the name goes by, my pain goes away and my urge to move

is down by at least 3 hours that I can get sleep.

The pain relief is needed to quiet down the war of wanting to move

but not being able to move because of the RA. My flare's are like

being the tin man without his oil can. (not even kidding)

[nightdancer]

Good post, Tilly! I hate it, too, when doctors will not prescribe something that they know will help a person, but "just in case".....................if there are problems down the road then we fix them, but right now, I take my pain meds like you do. On the bad days I take a higher dose, and on days when my back and neck are not so bad, I may not take any at all. so, I can go 24 hrs without any pain meds if I want to, as long as the RLS is quiet. I take the morphine on a regular basis, though, becauise once the morphine level has lowered, the RLS starts poking it's head around. The hydrocodone (not available in UK, I guess), for me, can be skipped whenever I want to, and then if I feel that twinge of RLS starting up, it is time to take one. As we all know, meds are different for everyone, so we have to do what we have to do, from all "natural" to completely medicated, depending on the day and person. But taking lower dose opiates does NOT lead automatically to addiction or morphine use. and, many pain meds out there are worse than morphine when it comes to addiction or dependence. That is like saying everyone who smokes pot will automatically end up taking heroin. another myth.

Donna/USA

[Hidden in reply to nightdancer]

The unknown....

Makes me scared.

It's so hard to walk into treatment blinded.

Where is my crystal ball when I need it?

I want to be sure that opiates are the correct way to go

with this. It works for now..

I am going to throw caution to the wind with what my doctor told

me about Opiates and hope that he is wrong.

Maybe he is a freak or I am because he told me that later on down

the road, I may need treatment to "get off" opiates...

My body gets upset without any for a day or two but I get through

it somehow.. by upset, I mean that my body wants to get up and go

while my head, the core of me wants to sleep.