[quote="kteague"]Alv7722,
Yes, the upset stomach is rough for me too. At this point I'm on 1.5 mg at bedtime (was taking twice that). Just curious, did your diagnostic or titration sleep study show any significant limb movements? Also, have you experienced any of the addictive behaviors? I did, but not to the degree of some I've read about. Lowering the dose resolved all that for me.
Kathy
Fibromyalgia
Re: Mirapex and Fibromyalgia
Remember:
What you read above is only one data point based on one person's opinion.
I am not a doctor, nor do I even play one on TV.
Your mileage may vary.
Follow ANY advice or opinions at your own risk.
Not everything you read is true.
What you read above is only one data point based on one person's opinion.
I am not a doctor, nor do I even play one on TV.
Your mileage may vary.
Follow ANY advice or opinions at your own risk.
Not everything you read is true.
kteague
I'm taking 4.5 mg. Don't know much about my sleep study cause the doc fired me and didn't tell me much before that. That was after he soaked me for $2000. If I quit the Mirapex for a few days, I definitely acquire restless legs big time! I had that before starting the Mirapex anyway, seems to go with fibro a lot. By the time I realized I had very serious OSA, I thought the Mirapex wann't effective, because so many of the symptoms are so similar. Dr. Dryland reccomended i continue the Mirapex, and he was right. I am having a hard time getting enough "sessions" for my bootleg apap to be effective, but I'm gaining.
Never give up! Al V
Never give up! Al V
-
sharon1965
- Posts: 1232
- Joined: Thu Jan 18, 2007 4:59 pm
- Location: Windsor, Ontario, Canada
alv
in your original post you mentioned both requip and mirapex, but subsequent posts only seem to refer to mirapex...is requip thought to help fms as well? i'm on low-dose requip for rls and severe periodic limb movement disorder, so i'm curious about this, as i've had no adverse side effects from the requip, other than that it could be the culprit for some residual daytime sleepiness
i'm going in for another psg on sunday night to see how my limb movements are doing on the meds, and whether the dose is sufficient, so i'll know more in a couple of weeks
btw, my sleep doc told me that many fms patients suffer from rls and plmd, as all three are thought to be neurological
in your original post you mentioned both requip and mirapex, but subsequent posts only seem to refer to mirapex...is requip thought to help fms as well? i'm on low-dose requip for rls and severe periodic limb movement disorder, so i'm curious about this, as i've had no adverse side effects from the requip, other than that it could be the culprit for some residual daytime sleepiness
i'm going in for another psg on sunday night to see how my limb movements are doing on the meds, and whether the dose is sufficient, so i'll know more in a couple of weeks
btw, my sleep doc told me that many fms patients suffer from rls and plmd, as all three are thought to be neurological
_________________
| Software | ||||
 | ||||
| Additional Comments: decapitated aura, comfortsleeve, padacheeks, papillow, pur-sleep, pressure 9.5, back to using polident strips | ||||
If you always do what you've always done, you'll always get what you've always got...
-
sharon1965
- Posts: 1232
- Joined: Thu Jan 18, 2007 4:59 pm
- Location: Windsor, Ontario, Canada
i meant to mention that my chiro told me that high dose magnesium is excellent for treating RLS, but she didn't know if it's effective for PLMD; it's a muscle relaxer though, and will help with restful sleep as well
btw, alv, i also appreciate discussions about fms...we've had many on these boards, but new information is always welcome
i've been waiting 3 months just to hear if i can get a referral to a fibromyalgia clinic at a teaching hospital 2 hours from here...it's been 13 years since my diagnosis, so i'd really like to be re-evaluated, since our one and only rheumatologist won't accept referrals for fms
i think in the meantime i'll check out dr. dryland's book
thanks for the info
btw, alv, i also appreciate discussions about fms...we've had many on these boards, but new information is always welcome
i've been waiting 3 months just to hear if i can get a referral to a fibromyalgia clinic at a teaching hospital 2 hours from here...it's been 13 years since my diagnosis, so i'd really like to be re-evaluated, since our one and only rheumatologist won't accept referrals for fms
i think in the meantime i'll check out dr. dryland's book
thanks for the info
_________________
| Software | ||||
| ||||
| Additional Comments: decapitated aura, comfortsleeve, padacheeks, papillow, pur-sleep, pressure 9.5, back to using polident strips | ||||
If you always do what you've always done, you'll always get what you've always got...
I think it takes about 3 times the dose of Requip as Mirapex, but I think it is somewhat esier on the stomach. Many doctors will not take on fibro patients because they have had no success treating them.
Dr. Dryland has had a high rate of success, along with having to cure it in himself. (He says he still has to work on managing his lifestyle every day) His second book seems to play down the role of the dopamine agonists in favor of lifestyle changes to not deplete adrenaline levels. The trouble is, many fibro patients are so flat on their faces they can't change their lifestyle. I was in that category.
I guess one telling point about the protocol is that my tender points are no longer sensitized. Conventional medicine says you have to have tender points for it to be fibro, I did, now I don"t. Lyrica is something that should probably be looked at also, I know nothing about it.
Al V
Dr. Dryland has had a high rate of success, along with having to cure it in himself. (He says he still has to work on managing his lifestyle every day) His second book seems to play down the role of the dopamine agonists in favor of lifestyle changes to not deplete adrenaline levels. The trouble is, many fibro patients are so flat on their faces they can't change their lifestyle. I was in that category.
I guess one telling point about the protocol is that my tender points are no longer sensitized. Conventional medicine says you have to have tender points for it to be fibro, I did, now I don"t. Lyrica is something that should probably be looked at also, I know nothing about it.
Al V
I am on Requip for my RLS, I also have Fibro, and neuropathy...very painful...the requip has helped me so much with the fibro and RLS it was unbelieveable when it started working..I tried Lyrica but the side effects were to much for me and it didn't seem to help the fibro..I am also on oxycontion for my neuropathy..I am going to buy that book..
Mitzi
Mitzi
-
Country4ever
- Posts: 1373
- Joined: Wed Oct 31, 2007 6:22 pm
The only problem with high doses of magnesium is that it can cause diarrhea. I suppose an easy way around that, is to take calcium with it. But I do have trouble getting higher doses of magnesium in me, because of that side-effect.
_________________
| Machine | Mask | |||
 | ||||
| Additional Comments: Resmed HumidAir 11 for humidifier | ||||
fibro in the family
I have been living with FMS / CFS for over twenty years with many different attempts to resolve it. I am just now working a lot harder to get the sleep side of things under control. I am taking Welbutrin / Neurontin which helps some and a I was on fairly high dose Oxcycontin. What I eventually figured out was that the high dose Oxcycontin was causing about as much pain as it was resolving.
Mitzi - if you can, I highly recommend a Suboxone treatment to cure the Oxcycontin dependency and get off it. Coming off Oxcycontin is NOT a fun ride. I'm still tapering my Subutex treatments as it does help a lot with the aches and pains.
I am anxiously reading y'alls posts because I have a fairly higher priority to solve the problem now. While it was just me, that was one thing, but now it looks like BOTH of my daughters (15 and 19) are getting it. None of us get good sleep and I think that is part of the problem. My sleep studies show that I don't get stage IV sleep at all, but that I also have a lot of alpha / theta content when I am awake. What I have recently read is that some people's brains are out of sync. That we have separate circadian rhythms for each side of our brain and that they can get out of sync causing daytime sleepiness and night time sleep disturbance and that one of the fallouts is FMS because of the sleep dep. Hyperneuralgia (painflammation hypersensitivity) is one of the side effects of not getting stage IV sleep.
I have also read a lot about thyroid connections, but my thyroid checks out normal. At least the standard check. I have heard that I should also get them to check my T3 and FT4, whatever that means.
My oldest daughter has stepped up to severe pain and depression. She is an artist and the pain in her wrists has gotten so bad that she often cannot complete her assignments. In addition, she sometimes has reflexive jerks, typically a series of head jerks to one side that jerk her whole shoulder too. She is the only one of us with that problem, but she has had it for years.
We have been to a TON of doctors, but haven't really found any solutions. A friend recently recommended bioneurofeedback as a way to get our brains back in sync, so I'm looking into entrainment devices. If anyone has any experience with visio aural entrainment, I'd like to hear about your experience and results. I have also heard that this can help ANYONE who has difficulty getting to sleep or staying asleep, because it hypnotizes you and leads your brain to a chosen series of frequencies. Seems to track logically for me, so I am going to give it a whirl.
Thanx,
Talyn
Mitzi - if you can, I highly recommend a Suboxone treatment to cure the Oxcycontin dependency and get off it. Coming off Oxcycontin is NOT a fun ride. I'm still tapering my Subutex treatments as it does help a lot with the aches and pains.
I am anxiously reading y'alls posts because I have a fairly higher priority to solve the problem now. While it was just me, that was one thing, but now it looks like BOTH of my daughters (15 and 19) are getting it. None of us get good sleep and I think that is part of the problem. My sleep studies show that I don't get stage IV sleep at all, but that I also have a lot of alpha / theta content when I am awake. What I have recently read is that some people's brains are out of sync. That we have separate circadian rhythms for each side of our brain and that they can get out of sync causing daytime sleepiness and night time sleep disturbance and that one of the fallouts is FMS because of the sleep dep. Hyperneuralgia (painflammation hypersensitivity) is one of the side effects of not getting stage IV sleep.
I have also read a lot about thyroid connections, but my thyroid checks out normal. At least the standard check. I have heard that I should also get them to check my T3 and FT4, whatever that means.
My oldest daughter has stepped up to severe pain and depression. She is an artist and the pain in her wrists has gotten so bad that she often cannot complete her assignments. In addition, she sometimes has reflexive jerks, typically a series of head jerks to one side that jerk her whole shoulder too. She is the only one of us with that problem, but she has had it for years.
We have been to a TON of doctors, but haven't really found any solutions. A friend recently recommended bioneurofeedback as a way to get our brains back in sync, so I'm looking into entrainment devices. If anyone has any experience with visio aural entrainment, I'd like to hear about your experience and results. I have also heard that this can help ANYONE who has difficulty getting to sleep or staying asleep, because it hypnotizes you and leads your brain to a chosen series of frequencies. Seems to track logically for me, so I am going to give it a whirl.
Thanx,
Talyn
_________________
| Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear |
| Additional Comments: previously ResMed VPAP SV |
Lyrica and FMS - questions
Speaking of fibromyalgia syndrome (FMS) and Lyrica, I have been thinking of switching from Neurontin to Lyrica. I would like to hear from anyone that has taken Lyrica for their FMS or similar problems.
Side effects?
Efficacy? Did it help?
I have heard a lot of controversy on the Mirapex / Requip treatments, so I'm holding out for more data, but I would like to hear from folks about the pros, cons. ?? and synergy or contraindications, if any, with Lyrica.
Thanx,
Talyn
Side effects?
Efficacy? Did it help?
I have heard a lot of controversy on the Mirapex / Requip treatments, so I'm holding out for more data, but I would like to hear from folks about the pros, cons. ?? and synergy or contraindications, if any, with Lyrica.
Thanx,
Talyn
_________________
| Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear |
| Additional Comments: previously ResMed VPAP SV |
-
sharon1965
- Posts: 1232
- Joined: Thu Jan 18, 2007 4:59 pm
- Location: Windsor, Ontario, Canada
this is good to know, countryCountry4ever wrote:The only problem with high doses of magnesium is that it can cause diarrhea. I suppose an easy way around that, is to take calcium with it. But I do have trouble getting higher doses of magnesium in me, because of that side-effect.
my chiro mentioned it in passing during my adjustment, so i haven't really looked into it yet, but thanks for that heads up
sharon
_________________
| Software | ||||
| ||||
| Additional Comments: decapitated aura, comfortsleeve, padacheeks, papillow, pur-sleep, pressure 9.5, back to using polident strips | ||||
If you always do what you've always done, you'll always get what you've always got...
-
Guest
I have heard a lot of controversy on the Mirapex / Requip treatments, so I'm holding out for more data, but I would like to hear from folks about the pros, cons. ?? and synergy or contraindications, if any, with Lyrica.
Thanx,
Talyn
Hi Talyn, I was on lyrica and I had terrible weight gain...plus it bothered my stomach...I was also on neurontin and the weight gain was one of the side effects too...Mitzi
Thanx,
Talyn
Hi Talyn, I was on lyrica and I had terrible weight gain...plus it bothered my stomach...I was also on neurontin and the weight gain was one of the side effects too...Mitzi
I *think* my wife may have fybromyalgia. This post is the most I've read about it. She has pain almost constantly. Or maybe it IS constant and she only mentions it when it gets above a certain level she's learned to tolerate (I know I do that myself). Her hips bother her, but her knees also bother her... and her neck... and sometimes she complains that "her skin hurts". I think that last one is what made me go... "Buh?" ...
So I listen.... and I hear "fybromyalgia" and I know nothing about it. But I have now heard it at least 3 times in different ways.
So how would you start to narrow down the symptoms? How would you start to get to the point where you go to the doctor and say, "I think we need to follow this up and look into fybromyalgia"?
So I listen.... and I hear "fybromyalgia" and I know nothing about it. But I have now heard it at least 3 times in different ways.
So how would you start to narrow down the symptoms? How would you start to get to the point where you go to the doctor and say, "I think we need to follow this up and look into fybromyalgia"?
_________________
| Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear |
| Humidifier: S9™ Series H5i™ Heated Humidifier with Climate Control |
| Additional Comments: original pressure 8cm - auto 8-12 |
-
Country4ever
- Posts: 1373
- Joined: Wed Oct 31, 2007 6:22 pm
Talyn.........have you ever been tested for Lyme?
Also remember that aspartame can give some pretty funky neuro/muscular symptoms.
About your daughter and her head jerk.......has she seen a neurologist?
I mention Lyme because it can cause fibromyalgia-like symptoms.
I know there is alot of controversy surrounding Lyme disease/testing, and I don't think everyone in the world has, like some people believe. But an untreated infection of it can cause alot of chronic pain and other neuro symptoms with it.
Whatever Fibro turns out to be, supposedly there can be a genetic component to it. I'm sorry to hear that all 3 of you might have it.
Yardbird......Fibromyalgia is a diagnosis of exclusion. That means that there isn't a test for it, but that you have to rule out other diseases that do have tests for them.
One thing I've noticed with my fibromyalgia is that if I get knee pain from arthritis, it seems to cause a flare up of pain in my whole body. Your wife may have fibromyalgia in addition to other things like arthritis. Hopefully she has a doctor who is familiar with fibromyalgia and doesn't just dismiss it as psychological. Has she seen her Internist recently?
I think alot of women around menopause develop it, so it wouldn't surprise me if its somehow connected to our hormones fading. But I also think that alot of women develop sleep problems around that time too. And sleep deprivation can definitely cause pain. Good luck to your wife.
Also remember that aspartame can give some pretty funky neuro/muscular symptoms.
About your daughter and her head jerk.......has she seen a neurologist?
I mention Lyme because it can cause fibromyalgia-like symptoms.
I know there is alot of controversy surrounding Lyme disease/testing, and I don't think everyone in the world has, like some people believe. But an untreated infection of it can cause alot of chronic pain and other neuro symptoms with it.
Whatever Fibro turns out to be, supposedly there can be a genetic component to it. I'm sorry to hear that all 3 of you might have it.
Yardbird......Fibromyalgia is a diagnosis of exclusion. That means that there isn't a test for it, but that you have to rule out other diseases that do have tests for them.
One thing I've noticed with my fibromyalgia is that if I get knee pain from arthritis, it seems to cause a flare up of pain in my whole body. Your wife may have fibromyalgia in addition to other things like arthritis. Hopefully she has a doctor who is familiar with fibromyalgia and doesn't just dismiss it as psychological. Has she seen her Internist recently?
I think alot of women around menopause develop it, so it wouldn't surprise me if its somehow connected to our hormones fading. But I also think that alot of women develop sleep problems around that time too. And sleep deprivation can definitely cause pain. Good luck to your wife.
_________________
| Machine | Mask | |||
| ||||
| Additional Comments: Resmed HumidAir 11 for humidifier | ||||