I know I continue to replay this complaint like an old broken record but honestly... what you're experiencing, Susan, is exactly what most of us experience with RLS. I've had entire weeks where I have to double the normal amount of oxycodone I take before I can even attempt to find the bed. It's the reason I've always advocated for "breakthrough" narcotics for those of us with highly variable symptoms. It could be the weather, stress, iron fluctuations, the low tides, the constellations, you name it... the medical establishment needs to recognize this syndrome as chronic pain and therefore-- unpredictable. We should be allowed to use the lowest amount of drug needed but be allowed to ramp up during acute phases of the disease.
Also, I wholeheartedly agree with Mark in that with symptoms all day long-- it's going to be hard to "catch" up with narcotics at night. Someone should look at putting you on a longer acting narcotic that can give you low, constant relief throughout the 24 hrs you are suffering!
It's getting worse. Way worse.
I have a theory that I go through a reduction in symptoms during the colder months, and that it gets worse again after late spring.
Right now for instance, I've pretty much been off Vicodin cold turkey for about a week, and aside from some withdrawal symptoms, I haven't really been driven nuts. The need to move is there, but everything is way less intense, and I seem to be sleeping OK with just my Oxazepam, which I've never known to actively mask any symptoms and mostly consider a "knock out" kind of drug.
Right now for instance, I've pretty much been off Vicodin cold turkey for about a week, and aside from some withdrawal symptoms, I haven't really been driven nuts. The need to move is there, but everything is way less intense, and I seem to be sleeping OK with just my Oxazepam, which I've never known to actively mask any symptoms and mostly consider a "knock out" kind of drug.
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SquirmingSusan
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FidgetBoy wrote:Also, I wholeheartedly agree with Mark in that with symptoms all day long-- it's going to be hard to "catch" up with narcotics at night. Someone should look at putting you on a longer acting narcotic that can give you low, constant relief throughout the 24 hrs you are suffering!
Thanks Josh and Mark, but you guys are preaching to the choir, here!
I went to the doc today and then spent the rest of the day in tears. I even brought my dh for reinforcements, but, well you all know what happens with doctors.
He just won't admit that the Requip could have caused me pain that happens all day, every day. And he just doesn't get it that RLS can cause pain. And even if he does get that, he won't treat my 24 hour pain, only the stuff that occurs at night. He's only interested in helping me sleep at night.
He suggested that I go to a pain clinic (gee, I've already thought of that!) and that I get my back MRI'd to make sure that the pain isn't residual from when I paralyzed my leg and had to have emergency back surgery.
He also suggested a psychiatrist for my depression, because antidepressants make the RLS worse.
He was ready to write a script for Vicodin, but I suggested to him that I try tramadol, and he jumped right on that. He ran off to look up interactions between tramadol and antidepressants, because I asked about it, and want to keep open the option of going back on and AD... I suggested he give me tramadol for all day long, but, no dice on that!
(Oh well, I can get that on the internet!)
That's what I need. More doctors from more different specialties. Does it ever occur to these doctors that the cause of my depression might be not being taken seriously by doctors?! Or the fact that I'm in pain, or can't sleep?!
Meanwhile, I'm controlling a lot of the daytime pain with Aleve. I'm probably going to blow out my stomach with that stuff, though.
Why does this have to be so difficult. Sigh.
Susan
Hi Susan. I've only recently started posting here, but I'm a long time lurker. I've been posting this same sort of post all over the board, so sorry if I sound like a broken record.
Your RLS experience is similar to mine. I'm 38 yr old female. I've had RLS for 13 years and the last 3 yrs, almost every night. But for the past 6 months, a RAPID increase in symptoms. I believe it is related to mirapex, which I tried about 6 months ago, and augmented bad and it never got better. My doc says it may just be a coincidence...I've read recently that there are alot of people who get this rapid acceleration of RLS in their late 30's....so who knows...
My symptoms now start early in the day and go until about 3 am, I have pain now along with the creepy crawlys, and it's in my arms, fingers and back a little bit too, along with my legs now. It was never this extreme, and when I have no medication, I want to kill myself. Sad, but true, and I have 2 small kids, so this is not an option for me.
Anyway. I've tried everything over the years and like most people, discovered by accident when taking narcotics for a surgery, that it helped make the RLS go away.
I usually have no problem getting docs to prescribe narcotics to me, because of failing everything else, and I've got it all documented. But even 4 per day was not enough and I have had to get some from other sources, just to get by, sometimes.
I've been feeling pretty hopeless but then something happened...
I read in Dr. B's book that you should take low doses to try to stay ahead of the rls. And to experiment with narcotics to find out if that works better that way. I HAD been waiting as LOOONG as I could go, and THEN taking 10 mgs, sometimes 15mg, and then it wasnt' even helping....anyway, long story I know...I found that when I took the 2.5mgs all day, sometimes upping it to 5 mgs, guess what?? My evening symptoms were sooooo much easier to control.
Well I told my doc this and said I'm gonna need more so I can spread it out , he suggested MScontin. Which does it for you. He said he was much more comfortable with that than letting me pop pills all day. He said just having a small steady sustained amount will not as likely lead to drug seeking behavior. I told him I didn't like to take it on days I wasn't haveing symptoms, but he said we are almost to the point where I need it all the time anyway. He said the key was when I said I need to stay ahead of it. He also said doctors prefer to prescribe the sustained release so you won't have those peaks and valleys of RLS and spikes of buzzes or euphoria. I said that makes sense and may be exactly what I need...
Well, it's only been a few days and I feel great. I don't have to panic about rations of pills. I take one in the morn and one at night. I'm not obsessing about the RLS, except in wonderment how I'm not thinking about it at all...THAT feels weird because it's been so long since I didn't think about it every minute of the day...
Maybe this will work for you. Do you have Dr B's book?
And by the way, anyone know when the next conference is going to be?
I'll start a topic in another thead too.
Hope this might help you.
Dana
Your RLS experience is similar to mine. I'm 38 yr old female. I've had RLS for 13 years and the last 3 yrs, almost every night. But for the past 6 months, a RAPID increase in symptoms. I believe it is related to mirapex, which I tried about 6 months ago, and augmented bad and it never got better. My doc says it may just be a coincidence...I've read recently that there are alot of people who get this rapid acceleration of RLS in their late 30's....so who knows...
My symptoms now start early in the day and go until about 3 am, I have pain now along with the creepy crawlys, and it's in my arms, fingers and back a little bit too, along with my legs now. It was never this extreme, and when I have no medication, I want to kill myself. Sad, but true, and I have 2 small kids, so this is not an option for me.
Anyway. I've tried everything over the years and like most people, discovered by accident when taking narcotics for a surgery, that it helped make the RLS go away.
I usually have no problem getting docs to prescribe narcotics to me, because of failing everything else, and I've got it all documented. But even 4 per day was not enough and I have had to get some from other sources, just to get by, sometimes.
I've been feeling pretty hopeless but then something happened...
I read in Dr. B's book that you should take low doses to try to stay ahead of the rls. And to experiment with narcotics to find out if that works better that way. I HAD been waiting as LOOONG as I could go, and THEN taking 10 mgs, sometimes 15mg, and then it wasnt' even helping....anyway, long story I know...I found that when I took the 2.5mgs all day, sometimes upping it to 5 mgs, guess what?? My evening symptoms were sooooo much easier to control.
Well I told my doc this and said I'm gonna need more so I can spread it out , he suggested MScontin. Which does it for you. He said he was much more comfortable with that than letting me pop pills all day. He said just having a small steady sustained amount will not as likely lead to drug seeking behavior. I told him I didn't like to take it on days I wasn't haveing symptoms, but he said we are almost to the point where I need it all the time anyway. He said the key was when I said I need to stay ahead of it. He also said doctors prefer to prescribe the sustained release so you won't have those peaks and valleys of RLS and spikes of buzzes or euphoria. I said that makes sense and may be exactly what I need...
Well, it's only been a few days and I feel great. I don't have to panic about rations of pills. I take one in the morn and one at night. I'm not obsessing about the RLS, except in wonderment how I'm not thinking about it at all...THAT feels weird because it's been so long since I didn't think about it every minute of the day...
Maybe this will work for you. Do you have Dr B's book?
And by the way, anyone know when the next conference is going to be?
I'll start a topic in another thead too.
Hope this might help you.
Dana
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sugbrendas
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Theres some controversy on this med but Deseryl in addition to my normal meds got me through my last flare up.
It made my arms and legs very very heavy. It also made me very sleepy even during the day so as soon as i could i took myself off and was fine after that.
Just talking here, not advising.
HTH
brenda
It made my arms and legs very very heavy. It also made me very sleepy even during the day so as soon as i could i took myself off and was fine after that.
Just talking here, not advising.
HTH
brenda
Finally able to sleep on average 9 hours a night!
Brenda
Brenda
This is the most ergent feeling in the world.
I want so badly to take all those silly doctors (nicest thing I could type) and lock them in a room. Live with chronic pain of any sort for 3 days straight, no breaks,.......better yet, lets add some creepy crawlies and no sleep.
See the trick here is to explain, over and over, it's not like when you were a resident and didn't sleep. You got a day off after a while, we don't. And you have to be sorta nice because they seemingly have more control.
They don't, they just have to be willing partners in our care. Not the drivers, not the guides, the partners.
The continuing lack of education among the medical community makes me want to scream. Not for me, I have my doc and it took several years, but we are good. Partners. yes, he now uses that term.
Dana, you can't leave for you my dear.
I don't think I would have gone through the last 13 yrs, after a lifetime of symptoms, without having broke my leg. I'd be here someday, wayyyyyy in the future. And your right, just the thought of RLS not being that nagging constant fight is just wild. It's nice to be able to make some choices in my day. It's not always great, but I have come to understand where it is now, is better than it was without help.
I'm glad your not lurking anymore, no matter what your story is, it counts. My heart goes out to you, your not alone in this any more. I hope what you find here helps. It did for me, saved me more than once from just running away and hiding. If you ever need to talk, we're here and more personally I am for you. I understand so well. Kids, no sleep, sports teams, pain, school, forget about home,......ugh laundry and cleaning, meals. I don't often have a clinical answer for anyone, but I got hope and a heart and I will share it freely with you anytime.
Susan,
My heart just cried, ok I did when I read your post. I love that your hubby went, and I can't tell you how I'd treat your doctor if I met him. I could but that would have to go into a PM. LOL
Yes, RLS can be painful. They said it, printed it, talked about 2 yrs ago at the National meeting. It's real and I'd love to know how he treat miagranes.......hmmmmmm a hammer!?! I'm not sure at this point in my life how I'd take all Poop he said to you. Probably cry first and then proceed to straighten up and straighten him......out. lol.
Honey I'm so sorry. I have had those days too, too many. Pain is a normal part of life, but daily 24/7 pain is something that pushes people to their limits. I wish I could promise many people here that docs are human, as it seems some make a career of medicine and should have done something that did not involve the humans at all.
My hugs, my love, Hi Brenda, Hi Josh ( miss your advice around here sir) and always the moon that we all share and send our love to.
Lynne
PS I'm not doing a spell check, I'm going to bed. I have a book I'm into. I'm mad now. Love ya'll.
I want so badly to take all those silly doctors (nicest thing I could type) and lock them in a room. Live with chronic pain of any sort for 3 days straight, no breaks,.......better yet, lets add some creepy crawlies and no sleep.
See the trick here is to explain, over and over, it's not like when you were a resident and didn't sleep. You got a day off after a while, we don't. And you have to be sorta nice because they seemingly have more control.
They don't, they just have to be willing partners in our care. Not the drivers, not the guides, the partners.
The continuing lack of education among the medical community makes me want to scream. Not for me, I have my doc and it took several years, but we are good. Partners. yes, he now uses that term.
Dana, you can't leave for you my dear.
I don't think I would have gone through the last 13 yrs, after a lifetime of symptoms, without having broke my leg. I'd be here someday, wayyyyyy in the future. And your right, just the thought of RLS not being that nagging constant fight is just wild. It's nice to be able to make some choices in my day. It's not always great, but I have come to understand where it is now, is better than it was without help.
I'm glad your not lurking anymore, no matter what your story is, it counts. My heart goes out to you, your not alone in this any more. I hope what you find here helps. It did for me, saved me more than once from just running away and hiding. If you ever need to talk, we're here and more personally I am for you. I understand so well. Kids, no sleep, sports teams, pain, school, forget about home,......ugh laundry and cleaning, meals. I don't often have a clinical answer for anyone, but I got hope and a heart and I will share it freely with you anytime.
Susan,
My heart just cried, ok I did when I read your post. I love that your hubby went, and I can't tell you how I'd treat your doctor if I met him. I could but that would have to go into a PM. LOL
Yes, RLS can be painful. They said it, printed it, talked about 2 yrs ago at the National meeting. It's real and I'd love to know how he treat miagranes.......hmmmmmm a hammer!?!
I'm not sure at this point in my life how I'd take all Poop he said to you. Probably cry first and then proceed to straighten up and straighten him......out. lol.
Honey I'm so sorry. I have had those days too, too many. Pain is a normal part of life, but daily 24/7 pain is something that pushes people to their limits. I wish I could promise many people here that docs are human, as it seems some make a career of medicine and should have done something that did not involve the humans at all.
My hugs, my love, Hi Brenda, Hi Josh ( miss your advice around here sir) and always the moon that we all share and send our love to.
Lynne
PS I'm not doing a spell check, I'm going to bed. I have a book I'm into. I'm mad now. Love ya'll.
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ViewsAskew
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dv wrote: But for the past 6 months, a RAPID increase in symptoms. I believe it is related to mirapex, which I tried about 6 months ago, and augmented bad and it never got better. My doc says it may just be a coincidence...I've read recently that there are alot of people who get this rapid acceleration of RLS in their late 30's....so who knows...
Dana, I'd love to know where you saw the rapid acceleration info. If you can find the link, please send it to me or post on the board. I'd like to see the source and why they say that (especially if they have any studies to back it up).
Thanks!
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.
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SquirmingSusan
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Thanks Dana, and welcome to the forum. Sounds like you fit right in with us difficult cases. 
Yes, you are saying exactly what Mark and Josh were saying about the pain, that I need to get ahead of it instead of playing catch- up all the time. Somehow, the doc just doesn't get that. What a moron.
And Lynne, yeah. It is just the worst when doctors don't believe us. The doctor is a little better than the nurse practitioner I saw the last time I was in to review my sleep study. She just wanted to give me a CPAP, even though my sleep study showed very mild respiratory events and no snoring. I was smack dab in the middle of augmentation hell, and she just ignored my please for help.
Obviously I need to find a neurologist instead of a sleep doctor, and one who has some guts and will deal with this stuff. I had a wonderful doc who treated my inner ear thing after everyone else had given up. He's the one who put me on Valium, because "this kind of vertigo will ruin your life, and I will do everything I can to help." I'm thinking of getting in touch with him and asking for a recommendation for a neurologist who will similarly put him-herself on the line for their patients.
Thanks for being hear. Sorry you all understand only too well what I'm going through.
Susan
Yes, you are saying exactly what Mark and Josh were saying about the pain, that I need to get ahead of it instead of playing catch- up all the time. Somehow, the doc just doesn't get that. What a moron.
And Lynne, yeah. It is just the worst when doctors don't believe us. The doctor is a little better than the nurse practitioner I saw the last time I was in to review my sleep study. She just wanted to give me a CPAP, even though my sleep study showed very mild respiratory events and no snoring. I was smack dab in the middle of augmentation hell, and she just ignored my please for help.
Obviously I need to find a neurologist instead of a sleep doctor, and one who has some guts and will deal with this stuff. I had a wonderful doc who treated my inner ear thing after everyone else had given up. He's the one who put me on Valium, because "this kind of vertigo will ruin your life, and I will do everything I can to help." I'm thinking of getting in touch with him and asking for a recommendation for a neurologist who will similarly put him-herself on the line for their patients.
Thanks for being hear. Sorry you all understand only too well what I'm going through.
Susan
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SquirmingSusan
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The tramadol isn't working. Good for pain control, but I have bad creepy-crawlies in my arms and legs. Sigh. I had high hopes, especially since I can get that one on line and bypass the idiot doctors. I suppose I'll have to call the sleep doc and tell him it doesn't work and to please write me a script for the hydrocodone...
Meanwhile, I have a long, long history of the diazepam working for the creepy -crawlies, and I have a 3 month prescription for that. If nothing else I can take the tramadol for the pain and the diazepam for the other sensations.
Meanwhile my daughter, bless her (she turned 17 yesterday) asked me why I had been crying all afternoon. I told her the doctor just wasn't listening and believing me. She was so sympathetic. After all, she had ulcerative colitis and had her entire colon removed a few years ago. One of the residents at the hospital was just such a jerk, and never listened to her or me. We called him "Dr. Moron." (his real name was similar)
Time to find a new doc. One with guts who won't let my treatment be determined by DEA red tape.
I hope you're all having a better night than I am. Hopefully the Valium will kick in and let me get some sleep soon.
Susan
Meanwhile, I have a long, long history of the diazepam working for the creepy -crawlies, and I have a 3 month prescription for that. If nothing else I can take the tramadol for the pain and the diazepam for the other sensations.
Meanwhile my daughter, bless her (she turned 17 yesterday) asked me why I had been crying all afternoon. I told her the doctor just wasn't listening and believing me. She was so sympathetic. After all, she had ulcerative colitis and had her entire colon removed a few years ago. One of the residents at the hospital was just such a jerk, and never listened to her or me. We called him "Dr. Moron." (his real name was similar)
Time to find a new doc. One with guts who won't let my treatment be determined by DEA red tape.
I hope you're all having a better night than I am. Hopefully the Valium will kick in and let me get some sleep soon.
Susan
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SquirmingSusan
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There. I took a half a valium, and then I emailed my ENT from the University of MN who was just such an excellent doctor. I'm hoping he knows a good neurologist. Meanwhile, the creepy-crawlies are settling down and I think I can get back to sleep. This is what I wrote:
Dear Dr. Levine,
I am a former, long-term patient of yours who you treated for chronic vertigo related to a perilymph fistula from scuba diving. I so appreciated your care and your willingness to put yourself on the line for me. Thank you so much.
Fortunately, the vertigo has almost completely resolved. I get an occasional attack, which can be managed by a low dose of diazepam. Unfortunately, when I quit taking that drug, I developed Restless Legs Syndrom, which the diazepam apparently had been treating along with my vertigo. I still have a prescription from my primary care doctor, and I only take it when I need it.
I tried Requip, and almost immediately had severe worsening of symptoms, including all day pain. I have been seeing a sleep doctor, and last month he gave me hydrocodone, which worked well for both the pain and the creepy-crawly sensations. I told him I would be willing to try tramadol, and that's what he wrote me today. Unfortunately, the tramadol helps with the pain, but not with the creepy- crawly sensations. He flat-out told me that he wasn't willing to treat me for the all-day pain; only the nighttime pain that keeps me awake, and that I would need to find a pain clinic because they worry about dependency issues when they manage pain all day long. This is backward from my understanding of pain treatment. Everything I read says that it is important to manage daytime pain and stay ahead of it.
Obviously, I need to find a different doctor who will take my symptoms seriously and treat this condition aggressively. Since you were one of the very few doctors who took my vertigo seriously, I'm hoping you can recommend a good neurologist for this other condition.
I appreciate your time, and all the excellent treatment you have given me in the past. Thank you.
Sincerely,
Susan Burns
(address and phone, etc.)
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ViewsAskew
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A neuro isn't necessarily a better option. Many of us have had multiple docs of different persuasions 
. My best doc ended up being a family doc who listens and cares. The three neuros I saw wouldn't touch a narcotic - oh, not true, one gave me the Percocet - now how useless was that on 24/7 RLS augmentation hell???
Sometimes you just have to lay it on the line with your current doc and tell them you need them to be your partner, you need different treatment, etc. If they can't or won't, then start making appointments. Eventually, most of us do find someone who will work with us.
. My best doc ended up being a family doc who listens and cares. The three neuros I saw wouldn't touch a narcotic - oh, not true, one gave me the Percocet - now how useless was that on 24/7 RLS augmentation hell???
Sometimes you just have to lay it on the line with your current doc and tell them you need them to be your partner, you need different treatment, etc. If they can't or won't, then start making appointments. Eventually, most of us do find someone who will work with us.
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.