My "journey" with RLS has been something. As a kid, I was told it was "growing pains". I figured that everyone was going through what I was!
I have degenerative disc disease (DDD,basically arthritis) in my spine along with 2 herniated discs that go in and out at various times. I had started to take Darvocet in 1996 for my back pain. I continued to work. Looking back, it was clear that the Darvocet also alleviated the RLS symptoms for the most part depending on if I took some at night. Back in 1998 a MD started me on Oxycontin. Remember, the "Pandora's Box" of Oxycontin had not been realized at this time. I started at 10mg twice daily and within a year I took 100mg twice daily! I decided to boot the Oxy and went through a hellish withdrawal. Again, looking back, it was clear that the Oxy tok care of the RLS as well as the pain but, my RLS symptoms were off the charts during withdrawl! My arms and shoulders were had the same RLS symptoms as my legs. A horrific time let me tell you.
Anyway, I have been on Darvocet since 2002 again. I really hate taking it due to the aceteminophen but, doctors assue me it's OK. But, it's MY liver!
Since finally realizing for the first time I had a defineable problem with RLS about 2 years ago, I have taken Sinemet, Mirapex and Clonazepam (briefly). The Mirapex (anywhere from 2 to 8 0.125mg pills nightly) is now causing augmentation in a big way. The past 2 weeks have been awful. To me, the best treatment is Darvocet (or, opiates) as they cause no augmentation. My problem is doctors. They view my suggestions as "seeking" which really ticks me off. I know what works best for me from experience. I feel if I could have an additonal opiate at HS other than Darvocet it would be the answer. As it is, the Darvocet is used for my chronic pain and if I use an extra at sleeptime, it eats into my 3 per day prescription for pain. So, I put up with being in pain more during the day so I can take a Darvo at night. IMO, this is unfair.
I live in Maine (between Auburn and Portland) and would love to find a doctor who understands me. If anyone could help out here I'd appreciate it. Thoughts or suggestions?
Chronic pain and RLS Rx
You can get Lortab 10/350. Many drug stores do not carry this combination. My daughter has fibromyalgia. He doctor got her set up with an online drug company. They were really tight with indebt info from her doctor so I think they are legal. But you never know. I don't have the name or address. Maybe your dr can help. It won't hurt to ask. I do know what you mean about stretching out your meds. I'm on 2/ 7.5 Lortabs a day. Some days I need 3 and if I wake up with the pain I need 4. My doctor and I are going to have a nice long talk in a couple of weeks. Wish me luck. If I can get the name of the online compay I'll get it to you. Sorry you have to go thru this. I know constant pain can really mess up your life and make it not too pleasent for your loved ones. What I really don't understand is..my husband doesn't see anything wrong with 4 or 5 strong drinks a night, but thinks 3 Lortabs a day is bad. Go figure...PAT
chronic pain and rls rx
Hi and welcome bebo. I just came on this board in July 2006.
I am sorry that you are having so many problems with the meds. I know that other members will post especially the ones that live in or near Main near Auburn/ Portland area.
I know that I am not much help in that area but wanted you to know that I am here if you just want to talk or vent about anything.
Hope that you find a dr soon and know other members will be giving you some good suggestions.
I am sorry that you are having so many problems with the meds. I know that other members will post especially the ones that live in or near Main near Auburn/ Portland area.
I know that I am not much help in that area but wanted you to know that I am here if you just want to talk or vent about anything.
Hope that you find a dr soon and know other members will be giving you some good suggestions.
Charlene
Taking one day at a time
Taking one day at a time
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ViewsAskew
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You sound like you already know a lot about this. . .finding the doc is really hard sometimes, though.
Have you seen the algorithm by Mayo Clinic? You can get to it by clicking on the link in my signature below. It may help as it says that if people augment on more than two DAs that you should use other drugs and that opioids should NOT be withheld. It worked with my doc, but he's pretty special.
There are posts all around, but mostly in the pharma section, on augmentation. And many posts about finding a good doc. Maybe reading through some posts may give you some ideas. Per the area you are in, I have no clues. You can try the list of doc on the Foundation's main website, but there may not be any in your area and even if there are, it doesn't mean they will know all that much about RLS or using opioids.
Have you seen the algorithm by Mayo Clinic? You can get to it by clicking on the link in my signature below. It may help as it says that if people augment on more than two DAs that you should use other drugs and that opioids should NOT be withheld. It worked with my doc, but he's pretty special.
There are posts all around, but mostly in the pharma section, on augmentation. And many posts about finding a good doc. Maybe reading through some posts may give you some ideas. Per the area you are in, I have no clues. You can try the list of doc on the Foundation's main website, but there may not be any in your area and even if there are, it doesn't mean they will know all that much about RLS or using opioids.
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.
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.
i live in Maine too. on penobscot bay.
i, too, have to deal with a medical system that is afraid to prescribe opiates. i think a part of this problem stems from their fear of the DEA - drug enforcement agency. the DEA is really giving doctors a hard time these days.
i am sitting here waiting for my doc to call me back, and i am nervous about telling her how, at this point, narcotics work better than anything i have tried so far. i am currently on Requip and it is giving me terrible insomnia. i am new to the RLS struggle, so we have just started experimenting with various treatments. but the one shot of Demerol i got last week when my symptoms were horrific, worked like a charm. and the Vicodin tablets i was given (just a few) have helped quite a bit at night. but there is no doubt in my mind that when she calls back and i ask for more Vicodin, she will balk. and i, being a somewhat insecure woman, will feel guilty for asking. i know i have to get very clear and simply state the truth to her, and stand up for what works so far. (YIKES!)
the whole thing makes me feel neurotic!
anyway, you have to ask for what you need and deserve. i wish she would read some of the posts here that might help her understand the condition better. and i hope she refers me to a specialist - if there is one nearby.
so, i identify with your struggle over narcotics and the medical system. Maybe this is characteristic of Maine? i pray that you do get proper care because you do need it and you do deserve it!
Moll
i, too, have to deal with a medical system that is afraid to prescribe opiates. i think a part of this problem stems from their fear of the DEA - drug enforcement agency. the DEA is really giving doctors a hard time these days.
i am sitting here waiting for my doc to call me back, and i am nervous about telling her how, at this point, narcotics work better than anything i have tried so far. i am currently on Requip and it is giving me terrible insomnia. i am new to the RLS struggle, so we have just started experimenting with various treatments. but the one shot of Demerol i got last week when my symptoms were horrific, worked like a charm. and the Vicodin tablets i was given (just a few) have helped quite a bit at night. but there is no doubt in my mind that when she calls back and i ask for more Vicodin, she will balk. and i, being a somewhat insecure woman, will feel guilty for asking. i know i have to get very clear and simply state the truth to her, and stand up for what works so far. (YIKES!)
the whole thing makes me feel neurotic!
anyway, you have to ask for what you need and deserve. i wish she would read some of the posts here that might help her understand the condition better. and i hope she refers me to a specialist - if there is one nearby.
so, i identify with your struggle over narcotics and the medical system. Maybe this is characteristic of Maine? i pray that you do get proper care because you do need it and you do deserve it!
Moll