Narcotics and rls

[Reverb]

I was wondering if other people had pain with rls. During the day I have most severe pain to the point where I can barely walk. But at night I have to move my legs every 10 seconds and cannot sleep. I've been on requip and now mirapex and am and was at the max dosage for each. They provide no relief and the only thing that has actually helped me is Percocet. I am only on 2 a day and my doctor is making me taper off those. I'm so frustrated as it is the only thing that has helped me and I feel like I should be on more of it not less. I am all for trying different medications, as long as they work. I'm so frustrated and sick of my doctors lectures about becoming addicted. I think it is easy for people with no pain to easily judge others. Now it has gone into my arms as well. Some nights I feel like cutting my arms and legs off I don't know what to do anymore. This effects every part of my life. And when I don't sleep enough the symptoms are even worse. I can't concentrate at all during work and have been missing a lot of time.
Just needed to vent a little bit.

[ViewsAskew]

Reverb, if you are taking that much Requip (or Mirapex), you may very well have augmentation. It's when the symptoms get worse because of the medication. One sign of augmentation is that it moves into new body parts, that it starts earlier in teh day, or is much more intense.

There are a LOT of posts here about it if you do a search or a little digging around.

It's very hard to get a doctor who understands the value of narcotics and doesn't freak out over their use. I was actually fired by a doctor a few years ago over using opioids. She couldn't handle it and thought I was in too much danger, so she refused to refill my script - on a Friday when I was leaving out of town.

[Hazel]

Reverb, Like Ann says, it may be augmentation. I did not tolerate requip or mirapex... augmentation with requip was within three days use, the first night was great, the second night I woke in the middle of the night with RLS within three hours, third night within an hour... vivid dreams also. Also try to find an earlier post regarding addiction vs dependence. If I come across it I'll post a link. Everyone is unique in what works and what doesn't. I've read where Elavil is listed as a drug that helps RLS, yet my experience was full blown full body RLS a night of sheer terror while home alone 40 miles from town... Klonopin some have found helpful, I woke feeling as if my legs had been cut off by a chain saw! It helped to take to the doctors other's experiences with medications etc.

I can only offer you encouragement, to continue to try to educate your physician using the information from this forum, and interview other physicians in the area taking new patients, ask to speak with the nurse about their experience with treating WED-RLS. Like Ann I am firing my GP for failing to renew my scripts wednesday the renewal date, even though when I called the office friday they said they would ie call the pharmacy after 5pm yea right so the office will be closed... when I speak about this at appointments he always says that there is no problem. His actions suggest otherwise and no longer going to pay for this frustration.

back to dancing ... just sitting here typing is the pits... dang it...

(((((((((((BIG HUG)))))))))))))))) Hazel

[Polar Bear]

Reverb - your doctor obviously has no idea how to treat WED and if he is willing to learn that is fantastic.
If he isn't willing to learn and to read any good relevant information that you can provide then he is about as much use as a chocolate teapot !!

And as for not providing your prescription on its due date - that is so bad.
Would this happen with any other condition that required regular medication ?

[Reverb]

Thanks or your replies. Sometime I just feel better when I vent.
My rls was 24 7 before. And now it's in my arms. If I don't take Percocet in the evening then I am screwed for the night. I think it's sad that I feel like I'm an expert on rls while my doctor knows pretty much nothing. I have really educated my self...and then some. I don't take lightly the use of narcotics. But when it is the only thing that works then I really don't care. I think it's hard for anyone to see how bad it is unless they sleep in your bed with you. I get to the point where I end up crying half the night. What I wouldn't do to get some sleep.
My B12 was a little low so I am getting shots for that now. Doesn't seem to help any but I am willing to try anything.
Cheers

[Reverb]

Thanks or your replies. Sometime I just feel better when I vent.
My rls was 24 7 before. And now it's in my arms. If I don't take Percocet in the evening then I am screwed for the night. I think it's sad that I feel like I'm an expert on rls while my doctor knows pretty much nothing. I have really educated my self...and then some. I don't take lightly the use of narcotics. But when it is the only thing that works then I really don't care. I think it's hard for anyone to see how bad it is unless they sleep in your bed with you. I get to the point where I end up crying half the night. What I wouldn't do to get some sleep.
My B12 was a little low so I am getting shots for that now. Doesn't seem to help any but I am willing to try anything.
Cheers

[dogeyed]

Hey Reverb,
Thanks for telling us about your experiences with RLS and treatment with medicines. All of us have had problems at times with docs being unwilling to prescribe what works. I used to take Tylenol-Codiene #3, and after ten years I had to go to Tyl-Codeine #4, which is double the dose of #3. This is a very mild medicine, perhaps one your doctor would consider, and for the longest time I took it three times daily. Then I went to four times, and then to Tyl #4. I do not feel like an addict. I don't pine after or endlessly wish I had more. But I learned early on, if I take too much, I'll have to give it up, so that's my motivator to pay attention.

Now, you, I do not see you as any kind of addict at all, and I really don't like how your doc goes and gives you Percocet, and then he's busy getting you off it. Under Polar Bear's post in her sig part, is a link to this website's RLS info the includes drugs; and on Views Askew (Ann) sig part is a link to a gazillion websites that includes drug info. Also, I have a couple websites your doc might want to look at, one is a government info page, the other is shorter, and both Polar Bear's, Ann's, and my links say opiates is one of the categories for meds:

http://patients.aan.com/disorders/index ... er_id=1053
http://www.ninds.nih.gov/disorders/rest ... s_legs.htm

Since the Percocet helped you at some point, and since that is sort of a strong drug, MAYBE your doc will do for you what mine did for me. They willingly gave me Tylenol-Codeine #3, which is 30mg of codeine, and I think I started out with two a day. Let me tell you, and others have talked about this within this forum in diff places, that I remember clearly that very first pill I took. I had not slept well in SO long, just like you, and that one pill knocked me clean out, and I slept all afternoon, all night, lots of nightmares, and woke up the next morning rather late (it was the weekend). When I woke up, I realized just what my body had been put through, I was absolutely drained, I could feel all the exhaustion in my legs, they had really been thru the mill. But the stuff worked! I no longer felt pain, I no longer had all that wiggling around, I slept fine, and it was like a miracle. That's one of the reasons I've never let go of it.

And also, before my RLS was treated, mine went up into my arms, as well. At several points, my whole body jerked so hard, I almost came out of my chair! So, you are essentially going around with no treatment. If your doc at any point seems unwilling to try out diff stuff and quits working with you on meds, may I suggest you try to find an internal medicine group of docs or a group practice of neurologists. But if your doc is working on this, and you give him some printouts, could be he'll try harder to find something to give you some relief. GG

[Hazel]

I'd like to add my thanks for the additional information. Printing it out to send to my GP, though I doubt I'll be working with him much longer. And will have it in my files when I see the sleep specialist thursday. It is so frustrating when a doctor works with you for two years, does not ever express any concerns, I have not increased my doseage in over 5 years, and have them delay refills. After four days of working to control the rls without medication, I am slowly losing spirit. I will call the sleep specialist on Monday to ensure that they have current copies of my GP files for the thursday visit and to put me on the cancellation call list if at all possible. In the meantime I'm keeping you in my thoughts and prayers. It does help to be able to vent! Blessings Hazel

[dogeyed]

HAZEL, I surely hope your sleep doc will understand this RLS thing a little better. And I hope he will work with you on various meds until he hits the right one. GG

[Hazel]

My hopes too. I last saw him 2 years ago, and he was familiar with Early/Johns Hopkins program. He was willing to prescribe the hydrocodone I use, yet so was the GP... just another glitch in the road...

Reverb, I have days where there is considerable pain in my legs and arms, it is worse in spring and fall, or over exertion, etc. While we fail to see the rhyme or reason, I do believe that there are certain things that cause my rls to be worse. Medication manages to keep me functioning, and live what I perceive as a normal life. Like Ann mentioned giving up wine, there are so many things we have forgone to manage our illness, yet many environmental things we can not control. One thing I perceive as being a contributor to increased rls pain & symptoms is aerial and field spraying of certain chemicals in the agricultural area I live.

I also noticed how many have suffered broken bones. I have fractured my right leg five times, the first being when I was ten.

Not fairing all that well, woke at 2:30am with severe pain where I could not walk. I am so angry with the GP as I see his refusal to talk to me about my treatment and care, and having his office staff tell me to keep checking with the pharmacy to no avail as a violation of patient's rights. If I were home I'd be at his office lodging a complaint, yet I am 300 miles away. I've opted to drive 300 miles in the opposite direction to see the specialist as I don't see a productive outcome of continuing to work with the GP.

Please know that we all have gone through similar situations, the despair and frustrations. It is my hope that you will find a doctor who is willing to work with you. There is a doctor out there who will listen and provide the proper treatment with respect and compassion for your welfare. Hazel

[Reverb]

I found a doctor at a sleep clinic in toronto who treats a lot of patients with rls. I called and talked to the receptionist because I didn't want to waste my time for a 10 minute appointment. I get an hour consultation at the end of november. I can't wait and am very hopeful

[ViewsAskew]

Talking to nurses or receptionists is often very helpful. One time I called and talked to a nurse; she steered me away from any doctor in her practice, and to a different practice. She said they didn't have the experience to help me where she worked. I always appreciated her honesty.

I hope the appointment works out well for you.

[Sandya4746]

I was put on hydrocodone for another problem and slept for 4 glorious hours without any rls symptoms. It was fantastic. However, my doctor won't prescribe them for rls and the other problem is resolved. He tried me on Requip which worked initially and then made it worse. He then put me in Mirapax and I was up all night with the worse symptoms I have ever had. I stopped that on my own. So, he sent me to a neurologist who put me back on requip and said see you in 2 months. One night on Requip was living hell. I called and spoke with the nurse. They never called me back. They worry about us getting addicted with low dose narcotics but could care less that we have night after night of sleeplessness. I think sleep deprivation us worse for all of our general health than 10 mg if hydrocodone a night. If I talk like I am informed of rls, the worse I get treated. RLS is bad enough but uninformed doctors make the disorder a nightmare.

[rthom]

Agreed--I feel aweful for folks like yourself that have to put up with that mentality and a lack of sleep too. Fortunately I have a dr that works well with me.
I wonder if there would be any way that those of us that have been on low doses for a very long time of narcotics can help the dr's understand and feel better about trying?
Maybe a chance for the Dr's to take a look at our situations then and now and assess for themselves whether we are all messed up from the drugs?
I wonder if some of us bring a plan forth to the RLSF they might make it available to the dr's that might want to look at it.?.

[badnights]

Sandya your neurologist needs to have some information about augmentation, which is a phenomenon that doesn't happen in most neurological disease, I think, certainly not in Parkinson's, but it's a real problem in RLS/WED. Augmentation (simplified) is when the dopamine agonist drugs (DAs), Requip and Mirapex, cause RLS/WED symptoms to get worse. (WED is the new name for RLS, see title of this discussion board). It happens more often and is more severe in patients who have low ferritin in their blood. Because of that association, most RLS specialists now recommend not giving DAs to patients whose serum ferritin is below 100 ng/ml. If ferritin is low, oral iron supplements might raise it (does not work for some people, though).

If you're augmenting, you have to get off the DA that's causing it; nothing else will help. (You can try raising the dose or adding an earlier dose once, but if the augmentation keeps pace, it's no good to try again, it will just escalate.) You will therefore need a different drug to treat the WED symptoms. Since you've augmented on both Mirapex and Requip, you should avoid all drugs of that class, and you pretty much are left with nothing but anti-convulsants and opioids. There are a number of anti-convulsants that might work, but (see quote from Hening, Buchfurher and Lee, below) if you're severe or refractory, chances are high that the anti-convulsants alone won't provide adequate relief.

Find some way to give this information to your neurologist (maybe just print this post?) and don't wait 2 months. I've referenced everything so s/he can look it up for him/herself. Ideally, he should get the little green book by Hening, Buchfurhrer and Lee that I quote below; although it's becoming a bit outdated, it's still the best guide available. I am not a medical expert, I'm a patient, but like so many of us, I've had to learn a lot about this disease and its treatment on my own. I am happy to share what I've uncovered, and I hope that, in the hands of a bonafide physician, it may translate into relief for you.

As currently used, long term dopaminergic treatment for an average ñ SD of 2.7 ñ 2.4 years produced significant augmentation problems in at least 20% of the patients and only 25% of the patients were totally free of this problem. It is important for physicians to carefully screen patients for changes in RLS symptoms for as long as they are on dopamine agents, with particular attention paid to those patients who present with the most severe RLS symptoms prior to treatment initiation. Given the marked increase in suffering with augmentation, a method for early detection and intervention would be an important contribution to the effective management and treatment of RLS.

Patients with augmentation had significantly lower ferritin levels than patients without augmentation (55.8 ± 43.6 microg/l vs. 105.8 ± 89.3 microg/l; p = 0.018).... Our data show an inverse correlation between ferritin levels and RLS severity ranging from ancillary diagnosis of RLS to augmented RLS. Patients with ancillary diagnosis of RLS had the highest ferritin levels, whereas patients with augmented RLS had the lowest. Midbrain iron deficiency has been demonstrated in autopsy, imaging and cerebrospinal fluid studies in idiopathic RLS. In recent genome-wide association studies, a common variant in an intron of BTBD9 on chromosome 6p21.2 was identified to be associated with RLS. A 13% decrease of serum ferritin was reported per allele of this at-risk variant. Moreover, a recent study showed that RLS patients with lower ferritin at baseline were at a higher risk of developing augmentation during the course of dopaminergic treatment....
There was an inverse correlation between RLS severity and ferritin levels. Patients with current augmentation had the lowest ferritin levels.

-

If dopamine agonists provide no relief, it is best to change to another class of drug. Gabapentin (or other anti-convulsants) and high-potency opioids are the next choices. Either of these drugs is a reasonable choice but typically the more severe RLS cases that comprise refractory patients respond better to the potent opioids. As discussed in Chapter 9, opioids should not be withheld from these patients, as they are very effective and safe when monitored and used according to dosing guidelines in Table 9.7. In patients without a history of drug abuse, dependence, tolerance, or addiction is very unusual.

From the RLS Foundation's Medical Bulletin for Healthcare Providers, 2011 (a replacement for the Mayo Clinic 2004 publications "An Algorithm for the Management of Restless Legs Syndrome", by a lot of the same authors) :

Several strategies may be useful in managing refractory RLS:
1. Switching to a different agent. The metabolism of
ropinirole and pramipexole is different, so either may work
when the other has not. Alternately, it may be useful to
change to one of the non-approved agents, such as
alternate dopaminergics (although not levodopa), anticonvulsants,
or opioids. Sedative-hypnotics are unlikely
to work alone in cases of refractory RLS.
2. Using a combination of drugs. This may allow reducing
the dosage of the primary agent to avoid adverse effects
while adding a different drug class to permit expanded
coverage. Typical combinations have seen dopamine
agonists paired with anti-convulsants, opioids, or sedativehypnotics.
Opioids may best address waking symptoms,
while anti-convulsants and sedative-hypnotics may be
particularly useful for decreasing sleep problems.
3. Considering drug holidays. In some cases, drug holidays
and rotating medications have proven useful,45 but these
are difficult regimens to manage and can cause issues when
stopping one agent leads to a flare up of RLS symptoms.
4. Using high potency opioid narcotics. Those patients
who have failed numerous medication regimens may be
managed with the use of high potency opioid narcotics.
Oxycodone, hydrocodone, and methadone have been most
used in this situation.

Hypofunction of the endogenous opioid, dopamine and iron systems are implicated in the pathogenesis of Restless Legs Syndrome (RLS).... The implications of this model are that in RLS patients with iron deficiency, dopaminergic system dysfunction may result and an intact endogenous opioid system or opioid treatment may protect the dopamine system from dysfunction. ....
Opioid agents improve both dysesthesias and motor symptoms in RLS patients....