Re: Anniversary and insomnia/Fibromyalgia

[Guest guest]

Hi Sharon,

This makes me wonder how many of us have to deal with fibromyalgia, as well as the Flatback? I'm having insomnia problems and I haven't even had the surgery yet or be weaned off the drugs. I can see in my recliner during the day with no problem, but even the memory foam mattress is not helping much any more. The night air seems to increase the pain level more than the daytime, and the wintertime is the worst for me. I do find that if I wear clothes that cut down the draft circulation and keep me warmer, I feel better. Since I'm hitting the menopause, I'm wondering how much I am feeling is related to this, too? I thought life was supposed to get easier, not more complicated, as we get older!

Llweyn

From: [mailto: ] On Behalf Of Sharon GreenSent: September 27, 2007 9:03 PM Subject: Re: [ ] Anniversary and insomnia

Hi,

Not bad questions at all. Yes, Oxycontin is an opioid, also known as "narcotic", but pain specialists seem to prefer "opioid" today because of the way our minds associate the other term with street drugs. I believe the term refers to opium derivatives or drugs chemically similar to them.

I was as surprised as you when I learned methadone is a powerful painkiller. The media has made a lot of so-called methadone clinics, where the drug is used to help people break heroin addiction. I knew someone who was on it for pain, so I wasn't surprised when it was prescribed for my postoperative pain. I had a great deal of bone-cutting in the surgery to fix my split spinal cord, and I guess the bone-cutting is what makes these modern scoliosis surgeries so painful. Anyway, maybe it was just my body chemistry and not necessarily a higher pain level -- how can I compare my pain to yours? -- but anyway, it worked much better for me. Oxy IR was my breakthrough med, but the methadone was the real workhorse.

Thanks for letting me know I'm not alone in the insomnia business, though I'm sorry you suffered it as well. The leg thing is partially controlled by my Elavil and Neurontin, but yes, it was a disappointment to learn that surgery couldn't make it better. The painkillers made it unnoticeable, though, which allowed me to walk for exercise. Fibromyalgia pain is very different from nerve pain or acute surgical pain. For me it's mostly tense muscles and tender tendons and muscle bellies. Sore and achy as opposed to excruciating, but it wears on you when it's there for years, all over your body. Looks like that will be the next thing to get under control. I have a good relationship with my PCP, but I know I may need a specialist for this too.

Thanks for the well wishes!

Sharon

Re: [ ] Anniversary and insomnia

Sharon,

I hate sounding like a idoit but is oxycontin in the family of opiod ? because if so I have had a lot of trouble sleeping as I am being weaned off it. Also if you don't mind me asking why you were on Methadone? I am guessing for pain and if that is true what gets you to that point were you have to take it and is it stonger then the other pain killers out there Sorry alot of questions there....lol

Happy Anniversary.

I am sorry to hear about your leg pain? leg pain is the worse

Sharon Green <sharon.green18verizon (DOT) net> wrote:

Hi, all.

Cam already wished me a happy surgical anniversary, but yesterday was one year from operation #3, so now it really is a full year. And by some strange coincidence I had my last tiny dose of methadone yesterday. Boy, is that hard stuff to wean off!

So now it's looking like the old leg pain probably is fibromyalgia. Dr. Rand had warned me not to expect that to be better after revision, based on the EMG he sent me for pre-op. I guess the methadone must have been helping me sleep, as I'm having a terrible time now, with restless leg syndrome kicking in (literally) around 3:30 -- 4:00 a.m., so if I manage to get to sleep before then, the rest is short-lived.

My PCP has me changing my Neurontin dosing schedule, so I'm hoping that will help. Her nurse practicioner seems to agree it's likely to be fibromyalgia. She actually did the "tender points" test on me. She pointed out, as I'm aware, that Elavil is used to treat fibromyalgia and Neurontin is used to treat restless legs, so I'm hoping that time, the change in dosing schedule, and getting back into swimming once my last toenail surgery is fully healed will make the difference.

I don't remember this as a topic of discussion; has anyone else been hit with insomnia when going off opiod painkillers?

Sharon

Catch up on fall's hot new shows on TV. Watch previews, get listings, and more!

[Guest guest]

Yikes, Llweyn, I try to stay positive, but based on observations of my parents, I'd have to say there's not a lot of gold in those golden years! Tired, forgetful, sleep-dysfunctional, afraid to travel for fear of being away from their physicians, who may or may not "get" their health woes. Add to that worry about their "kids", whose bodies are already self-destructing. If one is lucky enough to have money and health in old age, or even just health, then I suppose it could be nice if you can stop yourself from wondering just how long it will be before your own name shows up on the death notices page.

Double yikes, this sleep-deprivation stuff has certainly dumped some rain on my sunny disposition. Here it is morning, and I'm taking a break from tossing in bed so I can sip some Sleepy Time and let my poor hubby sleep undisturbed. I do hear what you say about menopause. It sounds like you and I are about the same age biologically. One hopeful note is that by the time you get revised you probably won't have to worry about that infamous post-op period. Mine took a few days to start, thank Heaven, but it ended up being my last. So right now I'm low on estrogen as well as opioids, and I feel like I'm on speed, sort of. I even cut out caffeine, and I love a good stiff cuppa gourmet tea. I forgot to mention menopause when I was in the doctor's office, and also forgot to ask if it's a good idea to use my left-over breakthrough Oxycodone pills, (Oxy IR). I've used a few but they aren't that helpful, at least not at the prescribed dosage, and I wouldn't dare self-medicate on them.

So you don't actually have a fibomyalgia diagnosis either? I guess I'm closer to it since the nurse did the tender points test, and I've demonstrated that I didn't have neuropathic pain from the disc degeneration. But I didn't push hard in the past because I was getting medication that helped and my reading on fibromyalgia led me to believe I would probably get the same meds with the formal diagnosis. I think there seem to be quite a few of us with flatback and fibro. An early book I read on fibromyalgia mentioned an apparent "concommittance" between scoliosis and fibromyalgia, though I've been unsuccessful in finding exactly where I read it. It makes sense though, when you think of what our skeletal imbalances must be doing to our musculature. Also, cervical spinal stenosis has similar symptoms to fibromyalgia, and may be implicated in some cases. My MRI last year didn't turn up anything remarkable at the cervical level, but I still wonder if cerebral spinal fluid blockage is an issue. There's a lot they don't know, which is probably why some docs are hesitant to diagnose fibromyalgia.

I guess I'll see if I can actually get some sleep. If not I'd better get back to the doctor, because I really don't want to go the whole weekend without sleep.

I'll let you all know how it goes.

Sharon

Re: [ ] Anniversary and insomnia

Sharon,

I hate sounding like a idoit but is oxycontin in the family of opiod ? because if so I have had a lot of trouble sleeping as I am being weaned off it. Also if you don't mind me asking why you were on Methadone? I am guessing for pain and if that is true what gets you to that point were you have to take it and is it stonger then the other pain killers out there Sorry alot of questions there....lol

Happy Anniversary.

I am sorry to hear about your leg pain? leg pain is the worse

Sharon Green <sharon.green18verizon (DOT) net> wrote:

Hi, all.

Cam already wished me a happy surgical anniversary, but yesterday was one year from operation #3, so now it really is a full year. And by some strange coincidence I had my last tiny dose of methadone yesterday. Boy, is that hard stuff to wean off!

So now it's looking like the old leg pain probably is fibromyalgia. Dr. Rand had warned me not to expect that to be better after revision, based on the EMG he sent me for pre-op. I guess the methadone must have been helping me sleep, as I'm having a terrible time now, with restless leg syndrome kicking in (literally) around 3:30 -- 4:00 a.m., so if I manage to get to sleep before then, the rest is short-lived.

My PCP has me changing my Neurontin dosing schedule, so I'm hoping that will help. Her nurse practicioner seems to agree it's likely to be fibromyalgia. She actually did the "tender points" test on me. She pointed out, as I'm aware, that Elavil is used to treat fibromyalgia and Neurontin is used to treat restless legs, so I'm hoping that time, the change in dosing schedule, and getting back into swimming once my last toenail surgery is fully healed will make the difference.

I don't remember this as a topic of discussion; has anyone else been hit with insomnia when going off opiod painkillers?

Sharon

Catch up on fall's hot new shows on TV. Watch previews, get listings, and more!

[Guest guest]

Dear Llweyn,

We live in a cold neck of the woods, and yes cold does affect our bodies. One thing that has truly helped me on the bitter nights is my electric blanket. Just having it on the lowest setting really gives those old bones a great deal of comfort. I feel like after my revision my body seems to be a barometer, I always know when it's going to storm, especially when bad snow is coming, I get an achy feeling like when you are about to get the flu. Bitter cold also seems to go right up my hardware, those muscles in my back get hyper tight, and it's very uncomfortable. Being in Canada you probably get it worse than me, we had a few blizzards last year, and dipped to minus 27 for a few days. I bought a new product to me on QVC to deal with the ice and my fear of falling, they are spiky things that attach to your shoes to keep you from slipping, hopefully they will do the trick when I'm out clearing the driveway. Peri-menopause is kicking my butt too, especially the sleeping part, I can't manage to sleep beyond the three /four a.m. period, try as I may. So I just put the time to good use, and scrapbook, good alone time till the kids are up at five for highschool. I guess life at all ends of the spectrum isn't easy, new challenges along the way, but at least we have each other to run all this by!

Colorado Springs

Re: [ ] Anniversary and insomnia

Sharon,

I hate sounding like a idoit but is oxycontin in the family of opiod ? because if so I have had a lot of trouble sleeping as I am being weaned off it. Also if you don't mind me asking why you were on Methadone? I am guessing for pain and if that is true what gets you to that point were you have to take it and is it stonger then the other pain killers out there Sorry alot of questions there....lol

Happy Anniversary.

I am sorry to hear about your leg pain? leg pain is the worse

Sharon Green <sharon.green18verizon (DOT) net> wrote:

Hi, all.

Cam already wished me a happy surgical anniversary, but yesterday was one year from operation #3, so now it really is a full year. And by some strange coincidence I had my last tiny dose of methadone yesterday. Boy, is that hard stuff to wean off!

So now it's looking like the old leg pain probably is fibromyalgia. Dr. Rand had warned me not to expect that to be better after revision, based on the EMG he sent me for pre-op. I guess the methadone must have been helping me sleep, as I'm having a terrible time now, with restless leg syndrome kicking in (literally) around 3:30 -- 4:00 a.m., so if I manage to get to sleep before then, the rest is short-lived.

My PCP has me changing my Neurontin dosing schedule, so I'm hoping that will help. Her nurse practicioner seems to agree it's likely to be fibromyalgia. She actually did the "tender points" test on me. She pointed out, as I'm aware, that Elavil is used to treat fibromyalgia and Neurontin is used to treat restless legs, so I'm hoping that time, the change in dosing schedule, and getting back into swimming once my last toenail surgery is fully healed will make the difference.

I don't remember this as a topic of discussion; has anyone else been hit with insomnia when going off opiod painkillers?

Sharon

Catch up on fall's hot new shows on TV. Watch previews, get listings, and more!

[Guest guest]

Hey, friends, there's venting and then there's what I wrote this a.m. I hope I didn't upset anyone too much, and if it was out of bounds I'm sorry.

Miracles do happen. I slept nearly 8 hours. Those hours were between 8 a.m. and 4 p.m., but at least it was sleep. Funny, I heard 's "Fire and Rain" yesterday in the doctor's office and I Googled it when I woke up and learned it was partly written while he was detoxing from heroin addiction. Even though I've done the methadone detox correctly I feel just awful. Can only imagine what he went through.

Pain-free rest and health to all,

Sharon

Re: [ ] Anniversary and insomnia

Sharon,

I hate sounding like a idoit but is oxycontin in the family of opiod ? because if so I have had a lot of trouble sleeping as I am being weaned off it. Also if you don't mind me asking why you were on Methadone? I am guessing for pain and if that is true what gets you to that point were you have to take it and is it stonger then the other pain killers out there Sorry alot of questions there....lol

Happy Anniversary.

I am sorry to hear about your leg pain? leg pain is the worse

Sharon Green <sharon.green18verizon (DOT) net> wrote:

Hi, all.

Cam already wished me a happy surgical anniversary, but yesterday was one year from operation #3, so now it really is a full year. And by some strange coincidence I had my last tiny dose of methadone yesterday. Boy, is that hard stuff to wean off!

So now it's looking like the old leg pain probably is fibromyalgia. Dr. Rand had warned me not to expect that to be better after revision, based on the EMG he sent me for pre-op. I guess the methadone must have been helping me sleep, as I'm having a terrible time now, with restless leg syndrome kicking in (literally) around 3:30 -- 4:00 a.m., so if I manage to get to sleep before then, the rest is short-lived.

My PCP has me changing my Neurontin dosing schedule, so I'm hoping that will help. Her nurse practicioner seems to agree it's likely to be fibromyalgia. She actually did the "tender points" test on me. She pointed out, as I'm aware, that Elavil is used to treat fibromyalgia and Neurontin is used to treat restless legs, so I'm hoping that time, the change in dosing schedule, and getting back into swimming once my last toenail surgery is fully healed will make the difference.

I don't remember this as a topic of discussion; has anyone else been hit with insomnia when going off opiod painkillers?

Sharon

Catch up on fall's hot new shows on TV. Watch previews, get listings, and more!

[Guest guest]

Before revision surgery, I could not get comfortable in bed, even on

my tempurpedic mattress. I would have to wake up and roll over

several times per night and I was always in pain.

After surgery, I slept very well while taking pain medication. For

the first couple of nights I didn't take any medication, I had

difficutly falling asleep and I could not get my leg to feel

comfortable. It worried me since that was part of what prompted me

to have surgery. Finally, I put a lidoderm patch on my lower back

where the pain seemed to originate, and I was able to fall asleep

much better. After a week, I was able to quit using the patches

again.

Now, I am happy to report that I fall asleep without any troubles.

Sometimes I still wake up because my shoulder hurts, but it is

getting better.

>

>

> Hi, all.

>

> Cam already wished me a happy surgical anniversary, but yesterday

was one

> year from operation #3, so now it really is a full year. And by

some

> strange coincidence I had my last tiny dose of methadone

yesterday. Boy, is

> that hard stuff to wean off!

>

> So now it's looking like the old leg pain probably is

fibromyalgia. Dr.

> Rand had warned me not to expect that to be better after revision,

based on

> the EMG he sent me for pre-op. I guess the methadone must have

been helping

> me sleep, as I'm having a terrible time now, with restless leg

syndrome

> kicking in (literally) around 3:30 -- 4:00 a.m., so if I manage to

get to

> sleep before then, the rest is short-lived.

>

> My PCP has me changing my Neurontin dosing schedule, so I'm hoping

that will

> help. Her nurse practicioner seems to agree it's likely to be

fibromyalgia.

> She actually did the " tender points " test on me. She pointed out,

as I'm

> aware, that Elavil is used to treat fibromyalgia and Neurontin is

used to

> treat restless legs, so I'm hoping that time, the change in dosing

schedule,

> and getting back into swimming once my last toenail surgery is

fully healed

> will make the difference.

>

> I don't remember this as a topic of discussion; has anyone else

been hit

> with insomnia when going off opiod painkillers?

>

> Sharon

>

>

>

>

> _____

>

> Catch up on fall's

>

<http://us.rd./tv/mail/tagline/falltv/evt=47093/*http://tv.ya

hoo.co

> m/collections/3658> hot new shows on TV. Watch previews, get

> listings, and more!

>

[Guest guest]

ne, it just amazes me how soon you and others have been able to ditch the pain pills. I know we're all different, and some people never get off. It's just good to know I'm not alone in the insomnia thing. And I guess I should be celebrating being off the methadone. But I guess I need to recover from this withdrawal stuff first.

Sharon

[ ] Re: Anniversary and insomnia/Fibromyalgia

Before revision surgery, I could not get comfortable in bed, even on my tempurpedic mattress. I would have to wake up and roll over several times per night and I was always in pain.After surgery, I slept very well while taking pain medication. For the first couple of nights I didn't take any medication, I had difficutly falling asleep and I could not get my leg to feel comfortable. It worried me since that was part of what prompted me to have surgery. Finally, I put a lidoderm patch on my lower back where the pain seemed to originate, and I was able to fall asleep much better. After a week, I was able to quit using the patches again.Now, I am happy to report that I fall asleep without any troubles. Sometimes I still wake up because my shoulder hurts, but it is getting better.> > > Hi, all.> > Cam already wished me a happy surgical anniversary, but yesterday was one> year from operation #3, so now it really is a full year. And by some> strange coincidence I had my last tiny dose of methadone yesterday. Boy, is> that hard stuff to wean off!> > So now it's looking like the old leg pain probably is fibromyalgia. Dr.> Rand had warned me not to expect that to be better after revision, based on> the EMG he sent me for pre-op. I guess the methadone must have been helping> me sleep, as I'm having a terrible time now, with restless leg syndrome> kicking in (literally) around 3:30 -- 4:00 a.m., so if I manage to get to> sleep before then, the rest is short-lived.> > My PCP has me changing my Neurontin dosing schedule, so I'm hoping that will> help. Her nurse practicioner seems to agree it's likely to be fibromyalgia.> She actually did the "tender points" test on me. She pointed out, as I'm> aware, that Elavil is used to treat fibromyalgia and Neurontin is used to> treat restless legs, so I'm hoping that time, the change in dosing schedule,> and getting back into swimming once my last toenail surgery is fully healed> will make the difference. > > I don't remember this as a topic of discussion; has anyone else been hit> with insomnia when going off opiod painkillers? > > Sharon> > > > > _____ > > Catch up on fall's> <http://us.rd./tv/mail/tagline/falltv/evt=47093/*http://tv..co> m/collections/3658> hot new shows on TV. Watch previews, get> listings, and more!>

[Guest guest]

I mostly followed Dr Bridwell's plan for getting off pain medication -

- use the oxycontin for a couple of weeks, then step down to vicodin,

then step down to lortab. I added the lidoderm patch after the

lortab on my own because my leg felt weird when trying to fall asleep.

I did use the pain pills longer than Dr Bridwell recommended, but

that was because my shoulder hurt very badly when I first tore the

rotator cuff. I mostly took the pills at bedtime and not too much

during the day.

I do have a pretty high pain threshold. Before flatback started

causing chronic pain, if I was in enough pain to hurt, there was

usually something seriously wrong, like kidney stones or gallstones,

or a broken bone. I still notice some pain every now and then, but

it doesn't last very long. And as strange as it may seem, I have

noticed that if I have pain when I wake up in the morning, it feels

much better after I take my walk.

I will be happy when my shoulder pain is completely gone. It hurts

when I sleep on my side -- either side. It is not nearly as bad as

it used to be, but when it does wake me up, I have to lie on my back

for awhile.

I am going to have to ask my doctor about that needle procedure to

get rid of the scar tissue. I do have much better range of motion

now, but there is still a ways to go. I am sure getting tired of

physical therapy. I have been going three days per week since the

first of June. Five days per week in the month of August.

I have to eat my lunch while I work on therapy days since I am using

all my break time to go to therapy.

>

> ne, it just amazes me how soon you and others have been able

to ditch the pain pills. I know we're all different, and some people

never get off. It's just good to know I'm not alone in the insomnia

thing. And I guess I should be celebrating being off the methadone.

But I guess I need to recover from this withdrawal stuff first.

>

> Sharon

[Guest guest]

That's interesting, ne. Maybe methadone is stronger than OxyContin. I know the Oxy IR doesn't feel like much to me, even now, and that's the same drug in immediate release form. Funny I wasn't given a step-down medication. Good thing I saved a lot of Oxy. But I stepped the methadone down from 120 mg/day to 1.25 mg/day, and slowly. It just hit me in the last week, like I've been fighting its sedating effects for so long that I'm hyped up. Changing the dosing schedule on Neurontin, so I get most of it at bedtime, is helping some. I'm sleeping, but pretty much only in the daytime. If I had to hold down a job I don't know what I'd do. My big exertion today was riding my bike about 1.5 miles. Then I collapsed for 2 hours. And I'm having to pop some Tylenol, as well as a little Oxy at bedtime.

Sharon

[ ] Re: Anniversary and insomnia/Fibromyalgia

I mostly followed Dr Bridwell's plan for getting off pain medication -- use the oxycontin for a couple of weeks, then step down to vicodin, then step down to lortab. I added the lidoderm patch after the lortab on my own because my leg felt weird when trying to fall asleep.I did use the pain pills longer than Dr Bridwell recommended, but that was because my shoulder hurt very badly when I first tore the rotator cuff. I mostly took the pills at bedtime and not too much during the day.I do have a pretty high pain threshold. Before flatback started causing chronic pain, if I was in enough pain to hurt, there was usually something seriously wrong, like kidney stones or gallstones, or a broken bone. I still notice some pain every now and then, but it doesn't last very long. And as strange as it may seem, I have noticed that if I have pain when I wake up in the morning, it feels much better after I take my walk.I will be happy when my shoulder pain is completely gone. It hurts when I sleep on my side -- either side. It is not nearly as bad as it used to be, but when it does wake me up, I have to lie on my back for awhile.I am going to have to ask my doctor about that needle procedure to get rid of the scar tissue. I do have much better range of motion now, but there is still a ways to go. I am sure getting tired of physical therapy. I have been going three days per week since the first of June. Five days per week in the month of August. I have to eat my lunch while I work on therapy days since I am using all my break time to go to therapy.>> ne, it just amazes me how soon you and others have been able to ditch the pain pills. I know we're all different, and some people never get off. It's just good to know I'm not alone in the insomnia thing. And I guess I should be celebrating being off the methadone. But I guess I need to recover from this withdrawal stuff first.> > Sharon