I wish we could start a movement promoting opiates for RLS. John Hopkins University states that "Dr. Willis (as in Willis-Ekbom diesease) in his description of this disease in 1685 also reported on the benefits of opiates for treating the symptoms. Thus for over 300 years opiates remained the only truly effective treatment for this disease. This category of medications includes codeine, hydrocodone, oxycodone, morphine, hydromorphone, methadone, buprenorphine and pentazocine.
An estimated 85 percent to 90 percent of patients with RLS will respond very well to opiates."
I have literally tried ever medication for rls and insomnia and only opiates have worked for me. When a disease can be so horrific and debilitating so as to ruin one's life "as it has mine" and cause your own body to make you so miserable you wish you would die. It's a crime that something so effective seems to be a last ditch effort if its even recommended at all. I have been put on drugs that made my rls go crazy, drugs that caused scary neurological effects, countless drugs that caused gastric problems, Several of which I was quickly addicted to and was in hell for weeks while being weaned off and even a drug that cost me $600 out of pocket with insurance. It's truly sad that in our supposed "opiate crisis" (that may be a pain crisis) that so many doctors are afraid to prescribe a drug that seems to be so effective. Letting countless people suffer for long periods of time while trying multiple other less effective drugs. It should be a crime!
Since the opiate crisis every doctor I have been to has wanted to ween me off the only medication that worked. It cost my my 18 year career repairing life support equipment, my savings, my retirement fund, my house, and many months worth of sleep. And all this after having it almost completely under control with tramadol for over a decade. All because doctors are afraid that opiates could be dangerous for me. I say being unemployable due to insomnia is far more dangerous.
P.S. if you think social security is there to help you if you have severe insomnia they won't. It's almost impossible to prove a disability case for insomnia when there is no blood test x-ray or MRI that can prove your claim.
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So sorry to read about what's happened to you and the difficulties you've had.
I can appreciate your frustration and possibly anger.
I quite agree that opioids should be made available to people who suffer RLS if it's safe for them and if it's their choice.
It does sound in your case that what's happened has also been a matter of possibly the profound ignorance of many physicians about RLS.
It's a shame that also that you appear to be a victim of the US health care system.
Add in the apparent overeaction to the "opioid crisis" and it all becomes a very complex issue which I can't help thinking may need a political solution.
As a person whose life has been SAVED because I found a doctor willing to prescribe low-dose methadone (5mg x 2 daily), I concur with your post wholeheartedly. The inability of most of the medical profession to distinguish between our (RLS sufferers) situation and that of those who are in danger of overdosing, has caused untold damage to too many lives. I mainly blame the DEA in the US for this unfortunate circumstance.
I feel your pain & rage. Where are you in the USA? This is a UK website but we do know of good doctors in the USA and the USA RLS foundation is campaigning for opioids for RLS & has funded a large study on safe low dose opioid use. Latest report below. You could consider joining- it’s $35 pa and there are free webinars by RLS experts. Dr Buchfuhrer is speaking on 10 th September. Dr Winkleman spoke on ‘Safe treatment of RLS with opioids and a summary is included in the latest RLS magazine ‘Nightwalkers Summer 2020.’ September 23 is RLS awareness Day and the US foundation are campaigning for opioids to be available for RLS.
The opioid study can be accessed below and if you print it off you could try discussing with your main doctors. Better still, find a knowledgeable doctor who will prescribe opioids.
There are several Centres of Excellence in the USA - Johns Hopkins in Baltimore, South California Clinic in Redwood are two I know of. Dr Glen Brookes in NY prescribes Buprenorphine.
Let us know where you are and we may know of an expert near you.
Hi Jackie,I am a member of the US RLS Foundation even though I live here in England. They produce a quarterly magazine called Nightwalker which includes help numbers, local groups and centres of excellence.
If you live in Delaware, the nearest Centre of Excellence is at Johns Hopkins University Hospital in Baltimore.
The nearest Support Groups are in Maryland -Louis Siegel, MD,louis@rlsgroups.org
and New Jersey, Harold Johnson, harold@rlsgroups.org
They may be able to direct you to a doctor nearer to you.
It's definitely worth joining the US foundation as it costs $35 a year and you get 4 magazines a year, access to the help forum, access to webinars by top US RLS experts and the subscription helps fund valuable research into RLS.
It's so hard isn't it? There is genuinely an opiate crisis out there and as a retired GP i remember being advised many years ago that opiates could be effectively used for pain and no one anticipated what would transpire in years to come when we/they have created vast number of prescription drug addicts whose lives are utter misery.
It's not the people who become the addicts but the opiates which have the strong ability to result in addiction and also tolerance so the dose needs to be raised.
I have dreadful RLS but am terrified of becoming an inadvertent opiate addict thus adding even further to my problems.
As I've written before, when I 1st took Pregabalin - obviously not an opiate - It appeared to me to be a wonder drug and I had no idea that the increased dose I began to need was due to some sort of tolerance nor any notion that in time it would become a controlled drug with addiction potential and what the neurological side effects would become.
That's one of the problems, that it can take so long before a problem with a treatment becomes apparent. The same occurred withe DA's.
I don't know what the answer is. It will take years before we know if opiates are truly safely non addictive in RLS.
I don't fancy being 80 and trying to come off them!
Yes, it is truly dreadful having severe RLS, If I hadn't been taking Pregabalin there is no way I could have worked for the last years of my career
Sadly all the drugs to treat/help RLS are unpleasant. I live in hope that we can all become activists and press for funding & research so new drugs can be found which will improve our lives. 25 years ago the MS Society put all their funds into respite care but members voted to switch to research. The change has transformed the lives of newly diagnosed.
That’s what we need for RLS- more members, more funding, more education of Doctors & neurologists & the establishment of specialist RLS clinics. It can be done. It’s happening in the USA so fingers crossed it’ll happen here in Europe.
Who knows, we could even see it within the next decade.
Last night I commenced Buprenorphine 200 micrograms
(As hydrochloride)
In Western Australia it is sold under the label Temgesic Sublingual Tablets.
It is a controlled Drug here in Western Australia so possession without Authority is illegal.
My Doctor went through the appropriate channels to get me the necessary approval. I have had RLS for 49 years and all other medications have been exhausted.
The tablets are dissolved under the tongue. They come in very small doses and I took 3 tablets over a 1.5 hour period after going to bed last night.
So that is less than 1mg of the Buprenorphine.
I immediately stopped all my other RLS medication last night and commenced the Buprenorphine.
I was taking .....
600mg Gabapentin
5mg Endone (oxycodone)
0.250mg Sifrol (pramipexole)
It took me a while to get to sleep but once asleep I slept through to 6.00am
I then stayed in bed till 11.00am sleeping on and off with no RLS symptoms and no jerking.
I second Joolsg comments. I have been a member for the RLS Foundation for many years and have attended their national seminar which was very helpful especially since my husband attended with me and finally understood what I had been dealing with for years. I have been through all of the meds including withdrawal from mirapex (took 4 tries) and am now on oxycodone. I joined the study on the long term use of opioids when it was started. It is now closed to new participants and I'm afraid that it will not continue for more than the two years. Unfortunately, many of the initial participants have dropped out or have not responded to the most recent questionnaires. It could be because they are no longer taking opioids. I am hopeful that they will get the funding to continue it for much longer. The RLS Foundation has done a great deal to lobby Congress for allowing the continued use of opioids for RLS in the US. And the support groups are a great resource.
The members of this group have been a life saver for me for the many years. Dare I say misery loves company? I only wish that some of the more dedicated members would compile their findings and the stories of so many members in a way that could be shared with those doing the studies and the doctors who are treating those with RLS. Where else can you find so many experiences from all over in one place? Although it would not be sanctioned or a scientific study perhaps, there is a great deal of important information on this site. Thank you to all who continue to research and respond so quickly to so many who need a friend and need people who are clearly VERY smart to help them understand and deal with this disease!!! Your time and effort is much appreciated and so very important.
It is truly a pity, as you say, since research studies have comments that addiction is low risk for RLS sufferers because the dosage is comparably low, compared to true addict usage.
There are no absolutes. I regularly take up opiates. Have for 28 years. I've had RLS for over 40 years. So as I have said before I like to take my RLS medication PRN. Therefore I use clonazepam as needed. I don't know where opiates help I am on it every day I don't help me. My oxy works for pain. Same dosage 28 years. I cant fathom using opioids for RLS.
I'm surprised but I guess everybody reacts differently to medications. Clonazepam did help me (although not enough to stop taking tramadol) while on it I quickly developed neurological symptoms from it. I started draging one foot when I walked, catching doorframes with my sholuder and having problems with memory. When I tried to stop taking it I felt like I was going to die and had to taper off of it over 2 weeks (2 weeks I felt horrible and had constant chills while pouring sweat).
Tramadol has made my RLS worse, and even though I stopped taking it two years ago I’m left with the legacy of what I had as a mild, few days a month problem with my legs now being something I suffer from almost every night, and now also in my left arm, base of my spine and neck too and have to take Pregabalin or I’d be suffering from insomnia as well. I’d warn anyone to stay away from Tramadol as a treatment for RLS. It gives you relief while you’re taking it though you will need to keep increasing the dose, and God help you if you want to stop taking it. My experience anyway.
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