wow, i am really grateful for my neuro then, because he prescribes me one of the most potent pain pills. i am so glad he understands how bad i hurt. it is inhumane, very inhumane how some people with chronic pain are treated. i've said it before and i'll say it again, we are not dopeheads because we have to take strong pain meds. thanks for the info lynne, i knew the dea probably watched that sort of thing, but i didn't think it was that strict.
dee
A newbie here, so I'm just kickin' this out there.
this seems to be the thread that most of us check back on most often so I thought I'd throw this in here as I found it rather interesting. I've been taking Lyrica (pregabalin) for a few weeks now. Today I went on Lyrica's website to learn a little more about it since I was kind of freaked out by all the withdrawl talk in another thread and was starting to wonder why doctors scare us away from opiates due to withdrawl risks but not any other drugs. I found this statement:
~ "Like most prescription drugs, LYRICA was required to be tested on animals before it was allowed for human use. In a small number of studies with mice, LYRICA was associated with tumors. This type of tumor has not been found in humans taking LYRICA. Talk to your doctor to find out more" ~
I love how it suggests that if you ask your doctor about tumored mice, he'll know all about it. Ha! And the reason that this type of tumor "has not been found in humans" is probably because humans haven't been taking this drug long enough for that to happen yet.
My question is - If this drug caused tumors in mice why the he*# would it be approved for use in humans at all?? Isn't that counterproductive to the very point of animal testing in the first place?
Yet, I'm supposed to be thrilled to have this medicine. How many opiates have a history of causing tumors and rapid weight gain in either mice or humans? but I'm a criminal if i want to try those instead of cheerfully throwing my body on the testing table and paying ten times the cost for a drug that says flat out that there is a reason to be afraid of it. I YI YI! Experiencing med-rage at the moment.
~ "Like most prescription drugs, LYRICA was required to be tested on animals before it was allowed for human use. In a small number of studies with mice, LYRICA was associated with tumors. This type of tumor has not been found in humans taking LYRICA. Talk to your doctor to find out more" ~
I love how it suggests that if you ask your doctor about tumored mice, he'll know all about it. Ha! And the reason that this type of tumor "has not been found in humans" is probably because humans haven't been taking this drug long enough for that to happen yet.
My question is - If this drug caused tumors in mice why the he*# would it be approved for use in humans at all?? Isn't that counterproductive to the very point of animal testing in the first place?
Yet, I'm supposed to be thrilled to have this medicine. How many opiates have a history of causing tumors and rapid weight gain in either mice or humans? but I'm a criminal if i want to try those instead of cheerfully throwing my body on the testing table and paying ten times the cost for a drug that says flat out that there is a reason to be afraid of it. I YI YI! Experiencing med-rage at the moment.
The light of a good character surpasseth the light of the sun
For me opioids, atleast the longer acting ones are great. Tylenol3 was awesome but just did not last long enough. To the lyrica talk, after gaining a lot of weight I went off of it and the withdrawls were hell. I have taken klonopin for more than a year and had no problem getting off of it, same with tylenol3. With oxycontin (hope thats spelled right) I slept great. I am trying Xyrem now and I have my good and bad days but I don't need naps anymore and have not had many side effects other than it just not working at all about 1 daya week.
Randy
Your welcome Dee,
I get just as mad and I would love to start some type of grass roots org. that showed the people we elect to WORK FOR US, that we can decide many things just fine for ourselves. The medical world is slow to coming around to our side of things, even though we are their bread and butter, lol, and the BMWs too! LOL
Emily, I have been on Percodan for ? 2 years now and yes, I had to raise the dose just this last year to 1 PNR (or as needed) during the day and I at bedtime, mainly because it has a short half life, I think 6 hours. I needed that whole one at night to make it past the RLS witching hours. And sometimes I need very little through out the day. I think for any of us it's a matter of tons of little things that decide how it goes for someone.
Stress, pain tolerance, hormones (for woman), general health, for some the weather....etc. So many things play a part in this subject.
I will be totally honest and tell you (as I think I have before) I almost feel lucky to have painful RLS, because when it hurts I can manage that most of the time. No I rarely am with some kind of pain, but after you have lived on 10 for years, 4-5 is managable. I personally, have different attacks that are the itching, buggy feeling and those I feel are like miagranes, just all over my body and I do call them attacks, as they do not happen often anymore for me. Those are completely different than my daily pain. And I wish them on no one ever. Pain I can get control.
It's never going to be the same everyday, but at some point it should level off, somehow, someway. Em, my love I'm not giving up, I swear.
Love, hugs, always the moon,
Lynne
I get just as mad and I would love to start some type of grass roots org. that showed the people we elect to WORK FOR US, that we can decide many things just fine for ourselves. The medical world is slow to coming around to our side of things, even though we are their bread and butter, lol, and the BMWs too! LOL
Emily, I have been on Percodan for ? 2 years now and yes, I had to raise the dose just this last year to 1 PNR (or as needed) during the day and I at bedtime, mainly because it has a short half life, I think 6 hours. I needed that whole one at night to make it past the RLS witching hours. And sometimes I need very little through out the day. I think for any of us it's a matter of tons of little things that decide how it goes for someone.
Stress, pain tolerance, hormones (for woman), general health, for some the weather....etc. So many things play a part in this subject.
I will be totally honest and tell you (as I think I have before) I almost feel lucky to have painful RLS, because when it hurts I can manage that most of the time. No I rarely am with some kind of pain, but after you have lived on 10 for years, 4-5 is managable. I personally, have different attacks that are the itching, buggy feeling and those I feel are like miagranes, just all over my body and I do call them attacks, as they do not happen often anymore for me. Those are completely different than my daily pain. And I wish them on no one ever. Pain I can get control.
It's never going to be the same everyday, but at some point it should level off, somehow, someway. Em, my love I'm not giving up, I swear.
Love, hugs, always the moon,
Lynne
Beanie- The issue with Lyrica causing neoplastic disease in mice is actually very common with a lot of prescription meds. It is for that very reason that I've always had an issue with animal testing... beyond my own personal beliefs, it has always made me uneasy to have drugs tested on a species that has nothing in common with us beyond the fact that we are both mammals. 
Though it probably won't make you feel better, all medications brought before the FDA MUST have studies to demonstrate safety in humans. Lyrica has been studied numerous times in humans but not for very long... the longest study in the package insert was only 13 weeks.
The other thing to keep in mind is that the company Pfizer, who makes Lyrica, ALSO makes Neurontin. When I looked at the chemical structure of both compounds, I was not surprised to find out that neurontin is almost IDENTICAL to Lyrica. In fact, the chemical structure of Lyrica is C8H17NO2 while the chemical structure of Neurontin is C9H17NO2. Now that doesn't mean that Lyrica won't cause cancer (as we never know for sure about those things until a drug's been out a while), but it does make me feel better that because Neurontin has been used for quite some time with no problems... Lyrica is more likely to not cause problems either.
Emily-my symptoms, even on oxycontin, are never fully gone. I have good and bad days still. The combination of Neurontin and Oxycontin take care of 70-80% of my symptoms, depending on the day.
Though it probably won't make you feel better, all medications brought before the FDA MUST have studies to demonstrate safety in humans. Lyrica has been studied numerous times in humans but not for very long... the longest study in the package insert was only 13 weeks.
The other thing to keep in mind is that the company Pfizer, who makes Lyrica, ALSO makes Neurontin. When I looked at the chemical structure of both compounds, I was not surprised to find out that neurontin is almost IDENTICAL to Lyrica. In fact, the chemical structure of Lyrica is C8H17NO2 while the chemical structure of Neurontin is C9H17NO2. Now that doesn't mean that Lyrica won't cause cancer (as we never know for sure about those things until a drug's been out a while), but it does make me feel better that because Neurontin has been used for quite some time with no problems... Lyrica is more likely to not cause problems either.
Emily-my symptoms, even on oxycontin, are never fully gone. I have good and bad days still. The combination of Neurontin and Oxycontin take care of 70-80% of my symptoms, depending on the day.
Josh
yeh me too, even on oxycontin symptoms are never comepletely gone, just makes it easier to live with. it does last longer than any other pain med i have taken, and like josh said "it depends on the day".
dee
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
Emily, opioids are the only meds for that fight ALL of the symptoms of rls. And they eliminate them almost completely for me, often they do eliminate them completely. The relief just doesn't last a long time. However, nothing else that I've taken has had an impact on all of the symptoms at the same time: urge to move, tingly crawly sensations and pain. The pain killers kill it all for me and I thank god everyday that they exist or I'd feel like my legs were on fire 24 hours a day.
Josh, I actually feel much better about the similarity in the make up of neurontin and lyrica considering neurontin has been around a while. Thanks so much for posting that. My fear was mostly based on the fact that lyrica hasn't been around for very long so it's a total gamble. Although I still find those meds to be scary, it's comforting to at least know how similar they are in regards to established long term use.
I'm going to a new doctor today to plead my case. Everyone say a quick prayer for me. ha ha. I've decided that I'm going to ask for Requip instead of continuing the lyrica. I'm hearing horror stories about withdrawl with lyrica and it's not providing the relief I was hoping it would. I'd really like to try requip now since I"ll have to pay $150 for the Rx either way. As long as this doctor will agree to maintain my hydrocodone so that I can deal with the transition and continue to use it for pain throughout the day then I will feel like a million dollars. If she acts shady about prescribing narcotics than I'm screwed. We'll see! She prescribed me vicoprofen before when i didn't know what rls was and just went in complaining about this madness in my legs. She quickly cut me off though saying she can't just keep giving me the med for "no reason" and that I need to see a rheumotologist and get sonograms and stuff. We'll see if I can convince her that I know what's going on and don't need to do that stuff first. I'll let ya's know what happens.
Josh, I actually feel much better about the similarity in the make up of neurontin and lyrica considering neurontin has been around a while. Thanks so much for posting that. My fear was mostly based on the fact that lyrica hasn't been around for very long so it's a total gamble. Although I still find those meds to be scary, it's comforting to at least know how similar they are in regards to established long term use.
I'm going to a new doctor today to plead my case. Everyone say a quick prayer for me. ha ha. I've decided that I'm going to ask for Requip instead of continuing the lyrica. I'm hearing horror stories about withdrawl with lyrica and it's not providing the relief I was hoping it would. I'd really like to try requip now since I"ll have to pay $150 for the Rx either way. As long as this doctor will agree to maintain my hydrocodone so that I can deal with the transition and continue to use it for pain throughout the day then I will feel like a million dollars. If she acts shady about prescribing narcotics than I'm screwed. We'll see! She prescribed me vicoprofen before when i didn't know what rls was and just went in complaining about this madness in my legs. She quickly cut me off though saying she can't just keep giving me the med for "no reason" and that I need to see a rheumotologist and get sonograms and stuff. We'll see if I can convince her that I know what's going on and don't need to do that stuff first. I'll let ya's know what happens.
The light of a good character surpasseth the light of the sun
Well I went to that doctor this afternoon. Unfortunately I'm here to say that it was the absolute most disconcerting and terrible interaction I have ever experienced with a medical professional. I'm really shaken right now. I was alloted a half hour appointment and I went in with my thoughts and notes organized, so excited and hopeful that I might have a chance for long term treatment or at least gain some new insight to this condition. I left her office five minutes later fighting back tears. I began by telling her that the discomfort and pain in my legs has become relentless and that I have spent the last month researching relevant conditions to find out what is causing this. I told her that I found out that my father as well as at least two other relatives are known to have this condition. I told her that every single description, symptom and criteria fit me to a T. THEN, I told her that I believe it is rls. I took out the medical bulletin to point out the symptoms and criteria - halfway through my first sentence after saying "rls" she grabbed the bulletin, scanned a few words as I was talking, tossed it on the counter and then told me that she is not comfortable prescribing any of the medications that treat rls because of the dramatic side effects associated with them and she will not treat rls at all and told me I need to see a neurologist. I began to tell her that while I'm willing to take some tests I do not have insurance and I'm seeking to at least have a conversation with a doctor first, so that at least the correct tests are performed. She interrupted me and said. Look it could be anything, anyone can get information off the internet and that doesn't mean you know what you're talking about. She was not the least bit interested in hearing what i was feeling, what I have learned, what other kinds of things she might be able to do to help me - NOTHING. She told me I need to see a neurologist or something. I told her that I would like to first find a good regular family doctor who will at least talk with me about this and she said - yeah..fine. and she got up and walked out of the room. She did everything short of telling me to get lost. I stood in the exam room in complete shock for a couple of minutes and when I walked out we crossed in the hallway. She looked straight down at the floor and didn't say a word to me. She didn't even try to pretend to care, as a human being, that I have something wrong with me.
I'm not hating this doctor right now for not being comfortable prescribing the medications, not even for telling me that she's not comfy treating rls in any way. I'm not upset because I didn't get something I needed. I'm furious and heart broken because this doctor completely abandoned her responsiblity as a healthcare professional to consult with me about my problem and take an interest in my care. Weather it be suggesting non pharmacutical things I can try or pointing me in the right direction or just listening to me. She flat out expressed that she is not interested in my health at any level and wants me to leave her office so she can go home. She actually had the audacity at one point to say that she wouldn't charge me for the visit. I told her there's nothing to charge me for.
I am so crushed and dissapointed that this person who I thought was a decent doctor and compassionate human being, disregarded every word I said, insulted me by implying that I'm ignorant enough to grab some random piece of information off the internet and run with it, and scooted me out of her office as quickly as possible. She was straight up RUDE. Weather or not she was comfortable treating a condition, she is obligated as a healthcare provider to consult with patients and exhibit common courtesy and good manners. i'm absolutely appalled at her behaviour. I'm also terrified that this is going to happen to me again and that I will never get adequate treatment because of ignorant doctors who aren't open to further education or interested in a persons cause of suffering. After experiencing this I'm completely amazed that anyone on this board has gotten a dr. to prescribe them narcotics AT ALL. I feel defeated by this condition and condemned by the medical profession right now but I'm trying to stay positive. I'm sorry for the length of this post but I need to get this out to people who understand. I would strongly recommend, in case anyone is in this area, that noone waste time and trust by seeking the treatment of dr. Debjani Roy in Arlington Heights, IL.
She's not interested.
The light of a good character surpasseth the light of the sun
OOO Beanie,
Honey I am so sorry. I just want to scream. It's the very reason many us of stay away from doctors until we have suffered for so long our health is at risk.
I can't count how many times I've heard bad stories, even had my own, well even today actually....but that one bites me where I can't be still.
I would have had a nut right there in her office. Unreal, Unresponsible, and totally unethical. Jumyowl would have been reciting the Doctors Oath in a letter to her I promise you that much. Maybe it's time we shake things up again ourselves.
No your not wrong for being mad, unhinged, or really to hide from any PHD....I know many of us have had that visit ourselves.
I'm really having a hard time looking for the right thing to say here. I want you to feel better, but truth be known, that is the way I feel alot of the time, and I know many others.
I so wish I could do something better by you right now Beanie, I'm listening and I do care.
My hugs and love and that moon shines for you too.
Lynne
Honey I am so sorry. I just want to scream. It's the very reason many us of stay away from doctors until we have suffered for so long our health is at risk.
I can't count how many times I've heard bad stories, even had my own, well even today actually....but that one bites me where I can't be still.
I would have had a nut right there in her office. Unreal, Unresponsible, and totally unethical. Jumyowl would have been reciting the Doctors Oath in a letter to her I promise you that much. Maybe it's time we shake things up again ourselves.
No your not wrong for being mad, unhinged, or really to hide from any PHD....I know many of us have had that visit ourselves.
I'm really having a hard time looking for the right thing to say here. I want you to feel better, but truth be known, that is the way I feel alot of the time, and I know many others.
I so wish I could do something better by you right now Beanie, I'm listening and I do care.
My hugs and love and that moon shines for you too.
Lynne
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ViewsAskew
- Moderator
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Oh, Beanie. How horrible. I am running off to a conference and have no time to write more. Just know I understand and sympathize.
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.
OMG, i would have went bullistic on that woman! Reading that made me so angry I can't even see straight at the moment! That woman is why there are so many people suffering with this. 
I can't even type anymore I am so mad!!!! We should all bombard her with mail telling her what a twit she is, and that she needs to re-read her hippocratic oath.
dee
I can't even type anymore I am so mad!!!! We should all bombard her with mail telling her what a twit she is, and that she needs to re-read her hippocratic oath.
dee
I feel like a science project!!!
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
“The syndrome is so common that it should be known to every physician.”
Dr Karl Ekbom, 1945
Beanie- sorry for your experience! The first thing you should do is report her to the Ilinois Medical Association- write down, line for line, exactly what occurred. If enough people report her, she will eventually need to report before the board. You should also check in with your clinic's director, pronto. Usually there is some sort of director or grand "puba" of every clinic. In hospitals, we have a department called "patient relations"... I'm not sure if there is something similar in clinics?
In the meantime, you need to find a new family doctor! Do your friends or family have recommendations? I find that word of mouth is the best way to find a new practioner. The descriptive buzz words you should be listening for are "friendly", "concerned", "great listener", "takes his/her time". My family doc actually knows very little about RLS... but he DOES understand pain and discomfort and he CAN read the Mayo guidelines. He empathizes with my symptoms and took the necessary steps to make me feel better. He always ends my appointments by saying "don't worry, we'll get you through this". That speaks volumes to me. Also-Don't be afraid to travel to see someone good either... it takes me 40 minutes to drive to my doctor. I would drive TWICE that long if it meant continuing to see him.
The other thing is....I'm probably going to get beat up for what I'm about to say....I don't think RLS is something that you necessarily have to see a neurologist for. If it's severe and not responding to anything, perhaps.... but I've seen 2 neurologists for my RLS and all I have to show for it is 4 months of augmentation and an unhealthy fear of narcotics. I sometimes think general practitioners dump patients onto neurology because they feel either imcompetent or don't want to be bothered. It takes 5 minutes for a physician to glance at the Mayo RLS guidelines and get the picture. I don't know what everyone else thinks but if a physician is unwilling to take the time to glance at the document, how does that reflect on his/her ability to take care of other issues you may be having?!
Keep your chin up, Beanie.... you deserve better, and all of us agree that your so-called doctor is a dipsh*t.
In the meantime, you need to find a new family doctor! Do your friends or family have recommendations? I find that word of mouth is the best way to find a new practioner. The descriptive buzz words you should be listening for are "friendly", "concerned", "great listener", "takes his/her time". My family doc actually knows very little about RLS... but he DOES understand pain and discomfort and he CAN read the Mayo guidelines. He empathizes with my symptoms and took the necessary steps to make me feel better. He always ends my appointments by saying "don't worry, we'll get you through this". That speaks volumes to me. Also-Don't be afraid to travel to see someone good either... it takes me 40 minutes to drive to my doctor. I would drive TWICE that long if it meant continuing to see him.
The other thing is....I'm probably going to get beat up for what I'm about to say....I don't think RLS is something that you necessarily have to see a neurologist for. If it's severe and not responding to anything, perhaps.... but I've seen 2 neurologists for my RLS and all I have to show for it is 4 months of augmentation and an unhealthy fear of narcotics.
I sometimes think general practitioners dump patients onto neurology because they feel either imcompetent or don't want to be bothered. It takes 5 minutes for a physician to glance at the Mayo RLS guidelines and get the picture. I don't know what everyone else thinks but if a physician is unwilling to take the time to glance at the document, how does that reflect on his/her ability to take care of other issues you may be having?!
Keep your chin up, Beanie.... you deserve better, and all of us agree that your so-called doctor is a dipsh*t.
Josh
Exactly josh, I'm so dissapointed becaus she was totally uninterested in even looking at what I brought in. She saw that I had notes written down and the algorithm out and info from several different sources and she treated me like I had just grabbed some random thing off of the internet because closing her mind and refering me to a neurologist was the easiest way to blow off her ignorance. Like I said before, I'm not just disappointed because she didn't give me meds, or even for not feeling comfy treating rls at all. I'm upset because the only reason she's uncomfy is because she doesn't know enough about it and if she would have had a whole conversation with me she would have ended up a lot more knowledgable and comfortable with the whole thing and THAT is her responsiblitiy as a physician - to listen and hear what a patient is saying and to do what's in the best interest of their health. If anyone knows of a doctor near the northwest suburbs of Chicago who is willing to treat rls I would be most grateful for the name and number. I'm going to call a couple of the doctors on the foundations list if I can get correct phone numbers. The information seems to be outdated. I'm afraid now but hopefully I'll find someone before I've spent so much money that I have to move my family out of our apartment!
I've believed from the beginning that a neurologist is not necessary for this condition. Sure, taking tests to rule out things It could be is great. You take the tests, then you get treated. Any doctor can do that. All they have to do is actually BE a doctor.
I've believed from the beginning that a neurologist is not necessary for this condition. Sure, taking tests to rule out things It could be is great. You take the tests, then you get treated. Any doctor can do that. All they have to do is actually BE a doctor.
The light of a good character surpasseth the light of the sun